Songs for Lexi

Songs for Lexi

HBOT update & election's potential impact on Autism Epidemic...

Sorry to report that HBOT thus far has not worked for Alexi.  We are not seeing positive changes... yet.  

 

Here's what I do know:  

I know that we rid her body of excess YEAST, I know that we have whittled her diet to exclude excess SUGAR and CARBS, I also know we are not as strict as we should be about cow's MILK which should be totally eliminated but that its inclusion in her diet has been much reduced.  I also know that she has been receiving one hour sessions of more concentrated OXYGEN for about 2 months now and that we have not seen much improvement. 

 

There is almost no limit to the things we can spend our money on trying for her.  She is almost 11.  I am not giving up - believe me -  but am trying to be realistic.  Autism impacts a family in so many ways.  For our family, it mostly impacts our ability to truly rest.  After a jam-packed holiday week which started with my birthday - which led to Thanksgiving - and the impending rush towards all things Christmas -- this being the Monday morning-after brought up this reflection... 

 

Our evenings and weekends are largely spent either IGNORING or DEALING with the fact that Alexi is up early many mornings (like at 3am), laughing without reason, jumping on her bed and from windowsills, blasting her ipod, craving movement and swinging constantly and scripting incessantly.  She cannot help what she is doing, of that I am convinced.  Her true nature is sweet and loving, mixed with humor with a teaspoon of rebellion and a tablespoon of sassy tossed in. The truth is that her brain and body are at war and that the urges she feels and reacts to are all due to the fact that she is trying to RIGHT herself, trying to SOOTHE herself. This I know to be true and more than anything else, and our ultimate goal is to help her feel okay within her own body.  

 

This Thanksgiving break was hard, there, I said it.  Trying to keep Alexi from waking up sleeping guests, trying to keep her off the computer, trying to feed her properly, trying to host and socialize and relax is hard work for our family.  It dawned on me how rare it is for us to sit and watch a movie together, because the guilt ratio is so high.  Indulge one daughter and you end up ignoring the other one.  We do it by splitting up a lot, but my memories of lying around after a holiday during a school break, watching movie after movie and truly relaxing are old memories from my youth.  This is a rant - no doubt about it - believe me - I am thankful for our family, our friends, our home - I am truly blessed in so many ways and mostly grateful for my husband for the fact that he and I are extremely lucky to work so well together as a well-oiled unit when it comes to this friggin' autism.  Let me reiterate that I am not unappreciative for what we have - just tired I guess.  Tired of working hard to fix what we can, without feeling like this issue is getting the attention it needs from the "powers that be" I suppose.  Which leads me to the next section here...

 

The Autism epidemic and our election.  

 

WHEW what a whirlwind this campaign season and this election have been.  So much exposure of our nation's antiquated and ugly points of view...  so much disappointment displayed about our leadership's failings and our unhappiness and fear as a nation on display via social media... hearing about battling families heading toward holiday time.  It was hard for so many to see the good in others, so hard for many to go home on Thanksgiving and to mix with opposing viewpoints about our impending leadership. Which brings me to my silver lining in what I felt was a surreal mess of an election......

 

While watching Donald Trump's son, Barron, on TV, many of us parents of autistic children saw a child who seemed to have autism.  Once you have a child with autism, you can usually spot it in other children quickly... often faster than that child's own family can identify symptoms.  Trump has been quoted as saying that Autism is, indeed, a largely ignored issue of epidemic proportions.  And then, videos started surfacing of his son's autistic-like behaviors.  And quotes of Trump saying that he believes in vaccinations, but he believes in rescheduling them to be a lesser amount and more spread out.  And then, a glimmer of hope gleams through this messy election filled with hate and ugliness.  

 

Here is a video link example if you care to watch it:  

https://www.youtube.com/watch?v=yZAd5Pu9iw4

 

Many folks connected to Autism causation research have..... died.   My first entree into this was finding out about the death of Dr. Bradstreet.  I had watched the following 2013 Autism 1 conference video online, only to find out afterward while googling his name that this amazing, eloquent doctor, and father of an autistic son...... was dead.    

https://www.youtube.com/watch?v=NtRxBC3MUow

 

Here is an article about 50 mysterious deaths connected to autism research:  

http://truththeory.com/2016/06/26/50-holistic-doctors-have-mysteriously-died-in-the-last-year-but-whats-being-done-about-it/

 

So, heading to exercise this am to work off some stuffing/gravy!  

 

Listen, life is full of twists and turns, you live to 50, as I am proud to admit, and you see some things - good and bad.  

 

I am thankful to have this method of communication and I thank you for reading this rant, especially.  

 

Onward!

 

 

HBOT

We recently started Hyperbaric Oxygen treatments for Alexi.  Now that the footbaths show she is largely FREE of Candida Albans yeast overgrowth, (we continue to fight yeast overgrowth but with a natural product:

(https://www.nowfoods.com/supplements/candida-support-veg-capsules)

 

-- it was time to start what is commonly called HBOT short for Hyperbaric Oxygen - yeah - that thing Michael Jackson did but to a lesser degree.  

 

WHAT?  Are they crazy?  you might be thinking...  not so much - it is a commonly attempted intervention for autism - here's a link on TACA's website to explain it to you:  http://www.tacanow.org/family-resources/hbot-for-asd/

 

 

In order to track possible improvements due to this intervention, here is a list of things that have happened since we started HBOT:

9/23 was her 1st session - she is currently on 5th session as of this blog post:

 

-Answered "What did you have for lunch today?" during session quicker than I have ever heard her answer...

-Started wanting to brush her teeth herself (1st time) and several times since - started putting toothpaste on, brushing all by herself all without my suggesting she do this... (a new behavior!)

-Told me "I can't help it" again last night after she knocked down a painting.... she seems to have meant it was an accident and that she didn't mean it.  

 

Now - these could all be due to who knows what....  I record them here as well as in my files in order to share with whoever reads this who might want to try this method.  

 

More to come... stay tuned.....  and cross your fingers please................ 

in the light of the next day...

i am amazed and touched by so many facebook responses to my previous post... i am so lucky to have such support from my friends and family and from strangers who read this blog and forward it around so others can know their struggle is not their own, but is shared................   i had banged that blog-post out in my tired frustration in an effort to share one night's thoughts swirling around in my head...   

 

what i come away with  (many kind, supportive comments and a full day later) -- is that everyone has things they struggle with in their lives...  things they would like to fix and cannot.  cancer is not fair, autism is not fair, job loss is not fair, having to have 2 jobs is not fair, war is not fair, shootings are not fair, and the list goes on-------- so many struggles are part of our human experience....

 

i just keep coming back to the same feeling - HOW can we have so many new food ALLERGIES, so many cases of ADD, ADHD, AUTISM, THYROID issues, TURRETS, AUTO-IMMUNE issues, overwhelming amounts of OBESITY... so many STUDIES and no true answers as to the cause(s) of autism.  studies, studies, STUDIES are all i look at and research - but no answers - just suggestions to read more studies... and reasons why that study is wrong and this one is right....

 

i feel strongly that the research strides that have been made concerning AUTISM are not public enough -- they feel "bought" to me -- the underground movement is too large.... there are TOO many autistic children and there is NOT ENOUGH public progress given all the fundraising walks, all the places you can give, give, give, give.......bracelets you can buy, t-shirts, jewelry, car magnets, but for what?  simply put - there are not enough answers for me as Alexi's mom. how can we have a problem of epidemic proportions and not have much more than autism walks and study-tossing on facebook to go on?  

 

Time is ticking...  Alexi is growing quickly - the human brain completes development around the age of 25 - and in my opinion there is too much BULLSHIT to have too weed through....  so much, in fact, that i have witnessed many people decide to stop fighting, stop investigating and just give up...  they decide to just embrace their child's autism - love them for who they are and move on -- and that breaks my heart because how will we ever learn about how to help our children's children if we lie down now?  

 

i love Alexi don't get me wrong - i love her personality that shines through - her sweetness and her "sassiness" - her smile - her infectious laugh - her carefree ease she often displays in a house full 'o stress -- i love the fact that she is sneaky enough to steal gluten filled snacks from our locked cabinet - i love that she boldly lies to me with her cute, chocolate-smudged lips -- she is awesome --- but she is STUCK -- there is no way around that for me -- she is stuck in a world where preschool characters dance around, where visions in her head distract her so much she cannot have a simple conversation, she cannot make a real friend - she cannot read and understand a book - at 10 she still cannot brush her teeth properly - it will take her years to learn how to get along in our world - it will take her years to learn how to make change much less pay a bill - it will take years for her to learn how to take a shower alone and how to have some kind of job somewhere......  

 

Make no mistake - there are increasing amounts of kids like her in our schools, in our country, in other countries.... and all of them are growing toward our workforce and changing the future of our healthcare system and our social security and and and and and....   THIS is the true essence of the overwhelm that i feel at 2am.... and in a different way at 9:47am..... where is this going?  what are we going to do?  and who can really help me to help our daughter?   who is going to stand up and make public what we need to hear in order to make real strides to fix this, for our kids and for their kids?  

 

up since 2am

So much passes thru your mind when your kid wakes you up at 2am and won't go back to sleep.  Alexi has been doing so well with sleeping lately - the QiGong massage calms her down well and the change of season to fall usually helps...

 

But last night was one of those nights - up at 2 - bouncing around, playing her music, - so i went and gave her a melatonin and laid down with her for what i thought would be about 20 minutes for it to start working and help her drift off...  that never happened.  and as i shared her twin bed listening to her scripting away - i had time to think.

 

time to be so pissed off about autism, time to resent the fact that i have no one to help me know how to make her feel better - it's all just guesses, no one to turn to that i can really truly trust to make her life easier, to relieve this churning energy, these un-pruned synapses or WHATEVER this f'ing autism is after all...

 

so trying not to be mad at the world, I instead tried objectively to just observe her and it's so heartbreaking because my daughter can't help herself - she was wired beyond belief - repeating words she learned at 18 months over and over and over -- they say synapses don't prune when you have autism - so the brain holds onto every last thing and every memory is as fresh as the day you made it -- so she's scripting the night away mentioning aides she had at 3 years old like she just saw them yesterday (BTW Chickie - if you're reading this - you made her list - "Chickie - circle time!" )  It's exhausting, frustrating, and just so worrysome - as I watched her get up over and over to do her routine - up on the bookcase, over to the window, stand in the window, talk about the window, and then jump down, back to bed, rinse, repeat....  then another one - spin the globe, point randomly and say "What's that?" and answer with a word, repeat said word, say, "mommom, what's that?  what's THAT?  her pleading with me to repeat her chosen answer-word because getting me to say that word feels good to her somehow...

 

well - let's just say -- a night up with an autistic child prompts a lot of thoughts and frustration... the light of day is so much better - but i skipped coffee and i'm gonna try and grab a nap............ just felt like sharing.  

YEAST OUT

9/13/16 last week Alexi had her 2nd chiro adjustment where her muscles were loose (instead of as tight as guitar strings) and there was very little "out" as chiro's say.  This is an amazing change!  We have been taking her to the chiropractor for over 4 years but his adjustments could never stay in place...  

What's different?  Well, according to her footbaths, her body has let go of most of the yeast overload.  We are just about finished with the 3 month round of Diflucan, and when we do finish, we will continue with natural ways to combat the yeast build-up and continue giving her foods that don't feed-the-yeast like processed sugar and carbs.  The fact that her body is now most likely adjusting to its new normal and not spiking and dropping in a fight with yeast overload which seemed to affect her muscles is a good thing.

 

Stay tuned... 

 

If you are reading this, and are confused as to why we are eliminating yeast -- here is a wonderful blog post http://drhyman.com/blog/2010/05/12/can-autism-be-cured/ written by Dr. Mark Hyman who is the Medical Director at Cleveland Clinic's center for functional medicine...  - it explains our approach in a very clear way....

 

TODAY MOST PEOPLE BELIEVE that Autism is a genetic brain disorder. I’m here to tell you that this isn’t true. The real reason we are seeing increasing rates of autism is simply this: Autism is a systemic body disorder that affects the brain. A toxic environment triggers certain genes in people susceptible to this condition. And research supports this position.

Think about it. Rates of autism have skyrocketed over the years, from an estimated 1 child in 3,000 to just 1 in 150 kids today. Sure, wider criteria for diagnosis and better detection might explain some of it but not an increase of this magnitude.

Dramatic scientific discoveries have taken place during the last 10 to 20 years that reveal the true causes of autism, and turn conventional thinking on its head. For example, Martha Herbert, MD, a pediatric neurologist from Harvard Medical School has painted a picture of autism that shows how core abnormalities in body systems like immunity, gut function, and detoxification play a central role in causing the behavioral and mood symptoms of autism.

Recently I treated a 2 ½ year old boy named Sam. He was born healthy but diagnosed with autism after his vaccination for measles, mumps and rubella at 22 months.

Every child with autism has unique genetics, causes or triggers. And it is not usually one thing but a collection of insults, toxins and deficiencies piled on susceptible genetics that leads to biochemical train wrecks we see in these children.

When I first saw him, this little boy was deep in the inner wordless world of autism. Watching him was like watching someone on a psychedelic drug trip. So we dug into his biochemistry and genetics and found many things to account for the problems he was having.

He had very high level of antibodies to gluten. He was allergic not only to wheat, but to dairy, eggs, yeast, and soy — about 28 foods in total. He also had a leaky gut, and his gut was very inflamed. Sam was deficient in zinc, magnesium, and manganese, vitamins A, B12, and D, and omega-3 fats. Like many children with autism, he had trouble making energy in his cells, or mitochondria.

His amino acids — necessary for normal brain function and detoxification— were depleted. And his blood showed high levels of aluminum and lead, while his hair showed very high levels of antimony and arsenic, signs of a very toxic little boy. His levels of sulfur and glutathione were low, indicating that he just couldn’t muster the power to detox all these metals.  In fact, his genes showed a major weak spot in glutathione metabolism, which is the body’s main antioxidant and major detoxification highway for getting rid of metals and pesticides.

Sam also had trouble with a key biochemical function called methylation that is required to make normal neurotransmitters and brain chemicals and is critical for helping the body get rid of toxins. This showed up as low levels of homocysteine (signs of problems with folate metabolism) and high methylmalonic acid (signs of problems with B12 metabolism). He also had two genes that set him up for more problems with this system.

Finally, he also had very high levels of oxidative stress or free radical activity, including markers that told me that his brain was inflamed and under free-radical fire.

This may all seem complicated, but it really isn’t. When I see any patient, I simply work through the 7 Keys to UltraWellness (based on functional medicine) to see how everything is connected, create a plan to get to the causes of the problems, and then help each patient deal with all the biochemical and physiological rubble that those causes have left along the road.

To create a roadmap for recovery you just take away what’s bothering the patient and give his body what it is missing and needs to thrive (based on the individual’s biochemical uniqueness). Then the body does the rest. Here is the roadmap I used to help Sam recover.

Step 1: Fix His Gut and Cool the Inflammation There

This step included a number of different tactics including:

§  Taking away gluten and other food allergens

§  Getting rid of his yeast with anti-fungals

§  Killing off the toxic bacteria in his small intestine with special antibiotics

§  Replenishing healthy bacteria with probiotics

§  Helping him digest his food with enzymes

Step 2: Replace the Missing Nutrients to Help His Genes Work Better

In Sam’s case we:

§  Added back zinc, magnesium, folate, and vitamins A, B6, B12, and D

§  Supported his brain with omega-3 fats

Step 3: Detoxify and Reduce Oxidative Stress

§  Once his biochemistry and nutrition was tuned up, we helped him detoxify and reduce oxidative stress.

§  Improve nutrition, reduce inflammation, heal the gut, detoxify — this should sound familiar.

As I said before, the keys of UltraWellness can help, no matter what the disease or condition. Biology has basic laws, which we have to follow and understand. All the details of Sam’s story fit into these laws. We just have to dig deep, peel back the layers, and understand what is going on. When we do this the results are nothing short of miraculous…

After following a gluten-free diet and treating his gut for 3 weeks, Sam showed dramatic and remarkable improvement. He was getting back much of his language skills and showing much more connection and relatedness in his interactions.

After 4 months, he was more focused, unstuck and verbal.

After 10 months, his bowels were back to normal, he was verbally fluent, mainstreamed in school and he “lost” his diagnosis of autism.

After 2 years all his abnormal tests were normal including the high metals, gut inflammation and damage to his mitochondria and free radicals.

And more importantly, the child was totally normal. Not every child has such a dramatic recovery but many improve, and some improve dramatically using the approach of functional or systems medicine.

This is just the beginning. Read the full article on Why Current Thinking About Autism Is Completely Wrong.

To your good health,

Mark Hyman, MD

 

 

 

 

"I can't help it"

So the pharmacy incorrectly filled out the Diflucan (can u believe it?) and as a result she had a much lower dose than the doctor intended.  Even with that lower dose, she did seem to be getting rid of excess yeast as was evident from the repeated yeast dumps in her foot bath.  From Father's Day June 19 - August 3rd she had the light dose -- then we started with correct dosage August 4 to now.   

 

Lately she has seemed more aware of her surroundings...  more connected. Making more observations without prompting...  These are the changes we have noticed: 

 

1 - 8/9 we noticed a marked decrease in scripting on the way to the beach - she was almost silent in the car!  I found myself looking in the back seat to see if she had fallen asleep!  At dinner at a restaurant, she was her sweet version and there was very little scripting.  However, it did return the next day :(

 

2 - on 8/23 - after about 5 years of once monthly chiropractic adjustments which help her tremendously, when he did his usual pre-adjustment prep to see what was "out" - he noticed her neck was loose, not tight!  There was hardly any adjustment needed!  That has never happened in all these years...  

 

3 - today this morning 8/24 - she woke up early, seemed irritable, not wanting to eat a bowl of peaches, seemed mad there was no time for gf pancakes, and when i asked her to go upstairs and get her bathing suit on, and asked again, she kept flopping around on the couch not getting ready so I finally walked over to her and asked her, "what is the deal - why don't you go upstairs and get your suit we're gonna be late for camp" she ANSWERED ME in a small voice, "I can't help it"......................................................  She has NEVER said anything like this before!  And then, after being at camp 10 minutes or so she threw up, so I was called and I turned around to go got her... So she couldn't tell me she felt SICK, but she did tell me SOMETHING about how she felt inside - gave me some kind of clue of her inner workings and world ------

 

This is one of those days that mark a glimmer of hope that she is not what she looks like or sounds like - that there is a whole PERSON inside waiting to be reached.........rescued..........helped...........  I read the book "Carly's Voice" http://carlysvoice.com/  and Carly's journey impacted the way I think of Alexi -- Carly finally "told" her family that autism feels like ants crawling on your skin...  and she is completely frustrated that she can't communicate using her voice --- but Carly found a way to let her friends and family know the person she is behind the grunts, the stims, the noises....  So Alexi is right - she CAN'T help what she is doing, how she is acting....  underneath there just might be another version of her - if we can clear all these toxins for her and help revitalize her gut -- help her to finally just be............. to relax............. stop stimming all day................ stop watching the same video clips endlessly...................   oh should i dare to dream???

 

 

Diflucan update #2

 

 

UGH - here is a short video clip of a recent foot bath...  gross...  and notably thicker and denser than in baths prior to Diflucan treatment.  This video clip is from week 3 of treatment. 

 

Update on die-off: 

 

Apparently, according to her doctor, her reactions to Diflucan seem to be mild die-off symptoms.  He renewed her script and we are continuing on for another month! 

 

Things we've seen:

For a few days she appeared itchy, scratching often behind her right ear but there was nothing there... thankfully that side effect passed quickly and she no longer scratches there.  From what I've been told, yeast die-off feels like bugs under your skin...

 

Also she vomited 2ce this past Sunday.  When cleaning up after her, I took the mat outside to spray it with the hose. Later I saw remaining frothy yeast-lookin' stuff in our grass UGH..........................  It is coming out of her feet via foot baths (see video clip above) and also exiting via her digestive system.  

 

We filled and tossed around water balloons yesterday.  When I told her not to throw one but follow me to the front yard, she asked me stiffly, "Where are we going?"   So simple.  So new.  She's NEVER asked me that question before, ever.  Who knows what to attribute it to -- just making a record here. 

 

This morning, my husband and I found her on the couch, reading a book.  It's been a long time since she's done that on her own. When she was little she used to "stim" by flipping back and forth through a book's pages, but today, she was reading aloud.  WOW.  Again, dunno why, just noting.  

 

Stay tuned...

 

 

Diflucan update 1

Alexi's been taking Diflucan for 2 weeks and 3 days.  We were told to expect possible yeast die-off reactions - anything from irritation to extreme behaviors.  Well, happy to report, she is tolerating it very, very well.  Since starting the anti-fungal treatment, she had a blood test which had results come back normal demonstrating her insides are tolerating the yeast removal just fine.  Also, since her start, her ionic foot baths have additional yeast clumps  (gross) which means it IS in fact dying and coming out of her body.  So strange, I know... 

 

Behavioral improvements (if she will have any)  are not to be expected until after the first month of taking Diflucan.  She has had some cool new things happen in last 2 weeks however, so I will share them here. 

 

1. She usually sits in the store cart while her sister shops around.  At Marshall's last week - I placed our cart next to a mirror so Alexi could make faces at herself while we shoe shopped around, as per usual.  This time, Alexi noticed something on her skin and got super irritated about it - THIS is totally out of her normal - she normally doesn't really seem to see herself in the mirror much.  She started getting extremely upset and said, "Take it off eye!  Take off please!!!!!!!!!!!!!!!!!!!!!" She worked herself up into a sad mess with a runny nose.  Very hard to deal with in the middle of the store - as you can imagine with shoppers staring and wondering WTF?  But we got through it - and not surprisingly she could care less about that blemish now - but in that moment she had an awareness about how she looked she's never shown before.  And yes, we did succeed in getting shoes for her sister, in case you were wondering.... :)

 

2.  We are STILL having much success with nightly QiGong massage...  She'll go from WIRED and hyper to calm, yawning and ready for bed within 15 minutes -- most nights....  We were warned to have Melatonin on hand (see previous posts for more about Melatonin) during the Diflucan anti-fungal treatment, just to soothe her to sleep as sleep disturbances can occur during anti-fungal treatment.  One night - several nights ago - I heard Alexi making noise in her room, after having had massage and been tucked in.  I was waiting to go in and ignoring the noises hoping she'd calm soon - but didn't know her sister went in to check on her - Alexi told her " want white vitamins please!" and Kyra ran down to tell us about this first-time ever language.  We never referred to Melatonin as "white vitamins".  Alexi knew she needed it to sleep - told it to us - and she slept soon after having it that night.  Since that night, she has not asked for Melatonin every night as we thought she might.

 

 Another interesting note - we often spin her - as a way to reset her before bed.  We have a net swing (see link below) in our basement attached to the ceiling beam.  If Qi Gong doesn't work, often we'll ask if she "needs spinning" and she'll often say yes like she did last night.  We go downstairs, she spins for a short time then offers, "Alexi bed... time for bed" and she goes up - puts herself to bed, and last night - she slept the whole night - no Melatonin. 

https://www.especialneeds.com/therapy-net-swing.html?gclid=CjwKEAjw2PK7BRDPz5nDh9GjoGcSJAAybcS3OsDJR3FOvw67dbjqJCa1Db5H9bltCUij6l-djvI0xBoCUNfw_wcB

 

Life with Autism is all about figuring out what works and doesn't work - for that child. No amount of studies, proof, analysis in the world can prove to me what will work with our child and her particular brand of Autism.  I have heard that they should call Autism -- AUTISMS -- plural.  Because every child with Autism is so unique, each having their own brand of issues and needs and wants and struggles and successes.  The puzzle visual associated with Autism is a fitting representation of this disability - because it takes so much trial and error. 

 

More to come soon about yeast removal updates!  

Diflucan

Since last fall 2015, we have researched and researched and researched, asked opinions of many, read blogs, asked around at support group meetings and now............  we have offically started Alexi on an anti-fungal treatment with her Doc's approval/script!  It's called DIFLUCAN and we started yesterday 6.20 Father's Day!   I will track any changes here...  Stay tuned!  And wish us luck!  

 

?? OK - for those of you who are wondering -- What is Diflucan?  

Ok - Diflucan removes the yeast overgrowth so common in Autistic children - the yeast (Candida) overgrowth can present with behaviors like hand flapping and obsessions...  in other words - commonly recognised autistic behaviors.  

 

?? Well - how does that yeast overgrow in the first place and why doesn't everyone have overgrowth?  

From our research - it seems that the body creates the yeast in the first place as a natural and protective barrier against metals trapped in the body's tissue.  Candida yeast feeds on -- guess what? -- SUGAR AND CARBS!!!!   The metals are "trapped" in the tissue of an autistic individual because their bodies are somewhat compromised from early on.  Their bodies seem to have an issue with IMMUNITY.  Either too much or too little.  Either they have rashes, ear infections, are sick all the time, allergies OR... in Alexi's case, an OVERACTIVE immune system...  

 

She was weak at birth, had jaundice (couldn't flush bilirubin) and required a hospital stay under lights to help her.  Then at 7 weeks, she caught a cold and developed RSV and was hospitalized because she couldn't kick the cold herself.  THAT, looking back, was a huge indicator that her system was weak and needed extra time to develop...  What she didn't need were shots of poison pushed into her system -- those could have waited....  Oh, how I wish we had insisted on waiting instead of complying with her then doctor's vaccine recommendation, until she was 7 years old and stronger.....  (see link for more:  https://www.youtube.com/watch?v=tvcdh7KlgPI

 

There's no way to know now, of course, and we are not anti-vaxxers... by any means... but if we had put them off - her compromised body might have caught up and gotten stronger first... there's no telling what our situation might be today if we had waited...

 

But something did change in her, after those shots - it's almost like they propelled her system into FLIGHT OR FIGHT mode that she remains in to this day.  After having them, her body was never the same... From that point on she was rarely sick or recovered super-quickly.  If her sister got a stomach bug and she caught it, she would only suffer for 1/2 the time. We didn't know all this right away, it took years to uncover, but gone was that baby who was weakened, now we had a daughter who played on her own who was "no trouble at all" to babysit because she didn't need anything, didn't need attention, didn't want or need anything it seemed... easy peasy...  But - the crying ----  she was extremely hard to soothe, cried incessantly (many of you will remember)...  she was so hard to calm down, so hard to get to sleep through the night - for hours and hours at a time all that crying.  She just seemed so sad.  Was her gut in pain?  We don't know.  The hardest part to deal with?  There was no looking into mom or dad's eyes with love or smiles really.... no real connection to us... 

 

?? Why couldn't her now super-immune body flush the metals then? 

Well - she doesn't sweat and cannot flush them herself.  Many autistic kids don't sweat as many have muscle weakness and their systems don't get overheated.  Her body cannot naturally get rid of the build up from these metals from shots, metals breathed in from the environment, she has a hard time ridding herself of any toxins in her food, from our cleaning products in her environment.....  

 

So ultimately, her body's method of protecting her (yeast) has overgrown which prevents her from sitting still and being able to focus and attend... from what I've learned this yeast jerks her body around and makes her uncomfortable.  So - we TAKE out the metals - thru her feet!  See IONIC FOOT BATH previous post!  Also, there are other methods too to remove metals - infrared sauna (make her sweat them out), Zeolite products help draw them out, there's Chelation products....  So we have options....  

 

?? Will yeast be gone forever and will she be normal afterwards?  

From what our foot bath practitioner advises us - Alexi's body will NEVER flush metals normally...  And the body will keep on creating protection and make MORE yeast... always...  For whatever reason.  But that's the theory....  So what do we do?  After we BLAST this Candida yeast overgrowth with this round of Diflucan, we keep it at bay with natural methods -- Oil of Oregano, Garlic extract, Biotin, among others (see link below for more...)

 

www.tacanow.org/family-resources/what-is-yeast-overgrowth

 

Withdrawal from SUGAR AND CARBS that her body craves as a result of having this yeast inside is not  going to be easy. However, from all reports, once you get past the first week or so, and as the bulk of this yeast dies off, things get a bit easier.  We will forever be limiting sugar and carbs for our daughter and controlling these metals and this yeast as we go forward...  

 

I know - this seems CRAZY....     But then, think for a moment, think about what your body is craving these days...  Sugar, Carbs?  Then think about how your body feels when you get past that magical 3rd day of eating HEALTHILY by cutting sugar and carbs...  Do you start to feel more focused with less brain fog?  Do you start to feel more energized?  Does your body get past that craving stage as you get more and more healthy?  There so are many autistic kids I have met whose parents say they ONLY EAT white food - do you know of any?  Parents will often lament something like, "No matter what I try, he only eats waffles and pancakes, he won't eat anything else..."  

And -- what's up with all those within the past few years it seems TV ads for PROBIOTICS?  Remember Jamie Lee Curtis and her ads for "Activia" yogurt and we were all wondering what she was talking about?  And then that product was joined by more and more and more probiotics...  Now EVERYONE seems to suggest them for bloating and stomach issues... Just why does our whole country need PROBIOTICS all of a sudden?  A whole new product to market...  and why is there so much CRAVING going on?  Why is everyone addicted, YES ADDICTED to carbs and sugar?  Why is there so much obesity?  Now imagine for a second if you couldn't flush all the crap you put into your body yourself?  The bodies eating our American diet are struggling enough,  but those bodies with compromised systems have an even harder time flushing the complete onslaught of all this crap...  sigh....  

 

Does it sound crazy anymore?  I'd bet not. With the amount of people we need to feed and water on the planet, it's only natural that the people in charge of feeding us look for shortcuts...  shortcuts like antibiotics in the animals, like pesticides in our crops, like throwing some chlorine in the water, like WOW the amount of UNNATURAL things going on with our food supply is daunting.  PAIR THAT onslaught of toxins with a body who is weak at birth - and add some more toxins - then live near an airport...  Add a bit of Doritos, some Fritos, some chemically-processed breads, cereals, some preservatives, some food coloring....  I'm just saying... it's not all that crazy.  

 

Now - add FULL MOON issues to this mix -- if you have an autistic child - you MAY notice they are often WIRED and SLEEPLESS during a full moon -- take a look at THIS BLOG for even MORE information about YEAST issues:  

 

http://ourcrazyadventuresinautismland.com/why-a-full-moon-affects-children-with-autism/

 

I will blog often next couple weeks on Alexi's progress...

Pls Cross your Fingers for us...  as we continue along this journey....  

 

Melatonin

A quickie...

 

We've had SO MUCH success with helping Alexi get sleepy using QiGong massage over the past few months -- we have rarely had to resort to using Melatonin!  

However, last night, even though she got her massage, she got some pre-bed spinning in her basement swing (always helps to regulate her system and calm her), and even though she had a foot bath that day which always helps as well... she still was irritated and wired most of the evening - lots of repeating and restlessness...  She definitely had a hard time falling asleep...  happens to the best of us, right? 

Well, we heard the familiar-sounding THWUMP on her bed after she had gone up to bed last night and we knew we had to wait it out for a bit to see if she could get herself to sleep - but last night Kyra decided to go up and give her sister a cuddle... 

Kyra called down to us excitedly "She asked for melatonin!" and Pat and I both ran up -- Kyra said, "Alexi, tell mom and dad what you just told me" and Alexi said "White vitamins please".....  and when I asked her if she wanted one or two, she said 2...

This was the FIRST TIME Alexi told us she needed Melatonin to sleep - admitted it to herself and to us - and we were blown away...  

State of Overwhelm

If you are a researcher by nature, like me, you might be in a similar state of overwhelm about taking steps forward with some aspect of your life.  I over research buying a couch, a blender, I over-research kitty flea treatments and summer camps, and over-researching combined with the amount of emails I manage daily, the constant influx of text messages, the Facebook pages I "like" about autism which add to my "feed", the messages left on our house voice mail, on my cell phone, the junk mail that arrives here, the constant robotic phone calls about solar and requested donations... I find that the INFORMATION that swirls in my head is simply overwhelming me lately and I admit to having "Paralysis" due to "Over-analysis."  

 

Alexi:  

Alexi is doing ok, but is still a full-blown scripter, she still flips on her bed and rattles the very foundation of our home and rattles the glasses in our our cabinets with every jump.  She constantly seeks swinging motion and more often than not, she craves swinging on her basement net therapy swing while scripting Elmo and Wonder Pets' scenes. She does ask for us to keep her company while she swings - she asks us for "push me swing mom/daddy" which means she would like us to sit and be near her while she swings and sings.  And man, that gets old.  Almost nothing makes you feel more helpless than sitting next to her while she tries in vain to fix what ails her.  

 

On a daily basis I do try to get her out of the house in the afternoons after school, because if I didn't, all she would want to do would be to swing, script and sing and use the computer.  We are thrilled that we obtained a bit of outside help through Perform Care and for 2 hours a week, someone else gets to take Alexi to the park after school, while I get to spend some uninterrupted time with Alexi's older sister.  I do find that when Alexi is on an errand with me, it is easier to connect with her, but whatever motivates her body to crave speed, swinging, scripting and repeating, screaming before "using her words" and singing sections of songs over and over, that need is much stronger than her desire for connection to us in the outside world.   And that breaks my heart every day.  I know we have had moments where we have reached that person inside - and that person is sweet and smart and has a great sense of humor - but to lose so many days and moments to this thing called Autism which redirects her inward - so much so that she cannot enjoy our family, or the friends we have over, or the friends we go to visit... well - it breaks my heart and makes me angry...  

 

The QiGong massage I mentioned in an earlier post is helping less than it had when we first started.  We still massage her nightly, but lately - I'd say the last 2 weeks - it is not making her visibly sleepy during the massage.  And, we look at each other after she's been put to bed, while she is obviously not sleeping, and we say - "well, maybe it's the full moon approaching?  maybe it's the sips of Coke she had earlier?  Maybe it's that 1/4 of a bagel she stole and ate?"  and then we sigh and ignore the sounds until they die down and we know we succeeded in getting her to sleep another night....  

 

The foot baths are going well, and we still do them weekly.  In fact to date we have spent upwards of $400 on them.  And it is recommended that we upgrade to do 2 weekly plus 2 sessions of hyperbaric oxygen treatments in addition to a round of Diflucan anti-fungal treatment in addition to adding many supplements and diet changes.  So - we engaged a nutritionist to help me feed our family and to make it simpler to food shop and prepare recipes that would work for our whole family.

 

But now - all I feel is more overwhelm as the suggestions are not simple and I feel paralyzed about moving forward.  I did try to make bone broth from grass fed organic animal bones only gotten sat am 20 minutes away but i don't have a large freezer and maybe i should buy one and where would we put it and i should look on craigslist and how am i gonna make her eat the bone broth with every meal when she hates it and spits it out?  Ok, what else?  Well - i should order un-pasteurized mail-order cream and buy a yogurt maker to make my own yogurt which takes 24 hours and I should replace sugars in her ice cream and ice pops and create a natural probiotic for her but wait a minute -- isn't she supposed to have less casein proteins and not have cow's milk at all not even a tiny bit?  

 

I find this journey overwhelming because, in a nutshell, the advice you gather, VERY OFTEN, does not jive with other advice you gather. And for an over-researcher like me - I am quite often STUCK and not sure what to do, who to listen to or who to trust. 

 

 

 

 

same page

In the scientific community - having a control group and an experimental group is essential to test which protocols work.  In the autism community - we don't have that luxury because life speeds by and we are trying to help our babies any way we can.  Some folks with children who have ASD decide they will embrace ASD and accept their child's condition for what the universe handed them.... Some folks do not. Both opinions emulate personal choices and human nature.  Imagine how your marriage would be tested if you felt one way and your spouse felt the other?  Alexi's doctor and I were talking at Alexi's annual visit and I was sharing all the things we have tried in the past year, and she offered this chilling analogy for being an autism parent  "Wow, Annika, being a parent of an autistic child must be like searching for your child's killer" -- to which i replied, "yes - it's like the ultimate case of "Lorenzo's Oil".... 

 

In this vein - Pat and I have been extremely lucky - as we are consistently on the same page when it comes to dealing with Alexi's autism.  I do the bulk of the research for what to try, for schools, for camps, for protocols to try, for support groups, for supplements, I am the one who does the connecting, the blog, the purchasing of autism-related stuff - and he is out there earning our whole family income, all him, that pressure is all on his back, and he has to trust me....  However, we talk daily about what to try next, how it's going, we discuss our opinions, our gut feelings and time and time again they match.  How blessed are we for that simple miracle?  I am so lucky to not have to fight to do what i believe, in my gut, is right for our daughter...  I have heard of many cases of not matching up in this way.. it can be very heartbreaking indeed.  

 

ON SAME PAGE YET AGAIN - AND HELPING ALEXI TO SLEEP.....  

A few weeks ago I met a woman thru a local support group - who teaches parents about all kinds of benefits of touch therapy...  Her name is Linda, and i must admit I liked her style immediately.  She showed us a couple video examples of traditional infant massage executed on infants by grandmothers in both Nigeria and India.  These video clips demonstrated centuries' old techniques handed down from grandmother to mother as a strong part of their cultures.  Linda also showed us some Qigong (Qigong = "CHEE GONG) video clips, taught us about some of Qigong's benefits and she told us how, over the years, she's massaged and taught parents how to massage their newborns, and how she's helped kids with sickle cell anemia pain, babies born with drug addictions, and kids with Autism.  

Her website is: www.sweetstrokes.com and she totally inspired me to buy this book which comes with a DVD which I bought on Amazon for less than $15...

 

Qigong (Chee-gong) Massage for Your Child with Autism: A Home Program from Chinese Medicine - with DVD

The benefits to Kids with Autism are listed on her site as being:  

  • Improved sleeping
  • Reduced hypersensitivity to touch
  • Decreased hyperactivity and increased attention 
  • More on-task and social relatedness behaviors
  • Development of trust and connectedness
  • Improved motor skills & sensory function
  • Improved vocalization
  • Enhanced body awareness
  • Better GI functioning/relief of gas and constipation

 

So - I bought the book... I'm happy to report that I opened the book...  Even happier to report that Pat and I watched the DVD this past Saturday.  We followed along and massaged our daughter.   And... I am also thrilled to report - she is responding very well.  Not only did she fall asleep that afternoon at a party (NEVER does that)  - she has slept well since (only 3 days but still) and so - even though it is TOTALLY PREMATURE for me to even mention this here - I will because....  you just don't know, till you try it...  and I feel the need to share this information - in the hope that it may help one of your children - to calm, to sleep, to regulate.  

 

To bring this back to my original comment - as we don't have a control group and an experimental group - we cannot KNOW beyond a shadow of a doubt that the Ionic foot baths are the thing that is helping Alexi --  or that the QiGong massage is what's helping her sleep.  We are beyond caring about what exactly is working.  Autism is a puzzle because there are so many pieces.  Each piece helps and fits, or it doesn't.  Pat and I both feel compelled to find all the pieces for Alexi - and to keep trying.  The human brain develops until the age of 25.  I can assure you one thing -- she is different than she was.  Brain Balance changed her.  Taking wheat flour out of her diet changed her.  Aging and development changed her.  Ionic foot baths are changing her.  QiGong seems to be helping and changing her - she has stopped somersaulting on her bed - but admittedly it has only been 3 days.  

 

Onward..........................  Feel free to share this or make comments...  

 

 

 

Ionic Foot baths

 

Ok.... the latest thing we are trying is called an Ionic Foot Bath.  If you google "ionic foot baths and autism" you will find plenty of links - both pro and con.  What I can show you is my video of some still photographs at 10 minute increments during Alexi's foot bath yesterday and another google-able video from another source at https://www.youtube.com/watch?v=4rPWTfyvO1c.  

 

No doubt - this is a controversial treatment. I have done some research and this is what I have gleaned from my research -- not suggesting this treatment to anyone, but I wanted to show what we've been up to.  Here goes:  The thought is that the body of any person, autistic or not, has trapped inflammation-causing metals within the body's organs - from silver dental fillings, from breathing in our air, from perhaps metals in shots...  there are many reasons for the trapped metals.  These metals cause the body irritation and inflammation.  For some reason, the body of an autistic person cannot flush these naturally.  They stay in the body, cause inflammation, and the body creates a type of padding to protect itself from these metals - this padding being Candida yeast.  This yeast sits in the body and feeds on sugars, carbohydrates and dairy products - causing cravings of these foods in order to live.  So...  the thought is, if we can help the autistic body eliminate the trapped metals, we can eliminate the need for the Candida yeast overgrowth, and by doing this, we can help to relieve the body of some behaviors which are distracting the person with autism - including: flight or fight, hyperactivity, distractability and problems with normal sleep.  

 

In Alexi's case, over the last few years we have gotten the same issue communicated to us over and over - she has problems "attending" and problems with comprehension.  She is distracted so much that sometimes learning is difficult for her.  She has the capacity to learn, as demonstrated by her ability to add three columns of figures and carry over, she can rhyme, she can give you 5 words that start with "L" and does so happily, but she often has problems being able to calm down, she jumps on everything she can find, she hangs from our door frames, she's like a human form of Curious George AND she craves sugar and bread, so much so our cabinets are locked...  This year she's stolen bread and has hidden while eating her stash in our bed - we climb in at night welcomed by dried crumbs from her evident snacking.  She is smart, but she is driven by what seems to be "behaviors" but what if she cannot help them?  Read on.... 

 

Here are some helpful links if you are interested in researching more about this - or just google -- there are TONS of ways folks are out there trying to scam us AUTISM PARENTS - make up your own mind as you check these out... I have also listed a couple scam links below - as there are tons of those as well.  

 

For now - Alexi enjoys these foot baths so far, seems calmer afterwards, has exhibited some different behaviors such as engaging us more lately, sleeping better, and just seems a bit different.  As we go along I will update this particular post.  

3/28/16 - Alexi is really doing better - so far we have kept foot baths to 1/week and have added Qigong massage most nights.  Update for last few weeks is that we have seen: better sleep at night, fuller scripting including more words, longer songs, new parts of songs, she has been commenting more like when i turned on water to take a shower she gazed up at ceiling and said to her dad, "mom take a shower" and that is unusual for her to comment on something especially something out of sight, she was more social at Easter dinner with her cousins last night, used their computer as usual but instead of using it the entire visit - she took lots of breaks and engaged more with them than usual, she seems to understand a bit more - overall she has been good.  Will update more as we go.  

 

Some IONIC FOOT BATH LINKS:

http://www.autismfile.com/diet-nutrition/yeast-your-child-and-you

https://www.amajordifference.com/lori-knowles-how-ionic-footbath-sessions-helped-son-recover-from-autism-2/

http://thinkingmomsrevolution.com/the-thinking-moms-revolution-study-ioncleanse-by-amd-treatment-effectiveness-for-asd/

http://www.addnaturalremedy.com/Step_Five.html

http://www.healing-arts.org/children/antifungal.htm

 

Some CONs Links:

http://www.spaindex.com/ionic-detox-foot-baths-science-scam/

http://www.livestrong.com/article/316450-comparison-of-ion-cleanse-foot-baths/

 

 

$$$

Strikes me that people without special needs kids might not know how having a special needs child is expensive.  How having a child like this can essentially drain the entire economy.  Whoa... "what do you mean?" you might say. 

 

Well, here's what I woke up thinking about, again, today - it's time to try for me to capture it and write it down...

 

It starts with copays, so many copays when you are looking for that initial diagnosis...  Then it goes to spending extra on little things, like - well, now baby jimmy won't wear anything with tags, so let's go spend the money and re-buy a wardrobe with these tagless soft shirts I read about, they are $$$ but he'll finally be able to wear a shirt without crying.... Then the attempts at social-skills building at 2-year old playgroups set up at speech therapy offices or with this out-of-the-box program I heard about - another $60 per week shot but you feel you have to try.... Then the money spent on food little Lisa will try but refuses to eat, but then your grocery bill really jumps up a notch or two when you find out that your child has food sensitivity issues and cannot ingest let's say, cow's milk or wheat flour or eggs -- every gluten-free item is at least $5 for a teeny half-filled box, but you do it, because you must try it, and because you start seeing some results... So now your grocery bill goes from $150 to over $200 or more each week which is an additional $200/month = $2,400/year, but it doesn't stop there...

 

Now you find yourself buying a special swing from that special needs catalog that might help with your child's vestibular needs or that strange bean bag thing someone told you helped their kid that you really gotta try, and you spend over $100 on an non-returnable weighted blanket, but you try it because might help your child to sleep... and sleep is something you now consider a commodity because your child often wakes up your whole house in the middle of the night without warning and has the ability to throw your whole family into a state of sleep deprivation for a week at a shot....  you find yourself driving over an hour for those state of the art specialty horse-riding lessons that insurance refuses to cover.... You argue with your insurance company because they deem the protocols you are led to as "experimental and not-medically proven" and therefore, NOT COVERED...  You do these things because you love your child and you feel you must try, because this thing you pay extra for just might be the thing to help you reach your child or, attempting this thing just might lead you to the next person who introduces you to the next thing you try... 

 

And then the something else that you try perhaps leads you to finally committing to spending real dollars on a program that really could make an important impact on your child - like our personal commitment to the Brain Balance program (the impetus for this blog) -- and you do it, not by dipping a toe but with your whole body submerged - because you have spent over a year researching, networking, connecting the dots, making the efforts and you finally surmise and decide THIS is something we must try....  and you fundraise and your friends & family attend your fundraisers and they donate their music to your CD and they donate to your gut feeling that this program has the potential to make a difference and you spend the thousands you raised (thank you again -- you know who you are) on a program that helps your child and brings them closer and everyone is thrilled, cuz you were right on this one.... 

 

But then perhaps, just perhaps, your child is struggling or getting bullied in school and your district won't give you what you KNOW is the right thing for your child to succeed - and you KNOW that you need to hire that special needs lawyer and you HAVE to fight the system because you KNOW beyond a shadow of a doubt that only you are the best advocate for your child -- for who they could be if they could just communicate --  because you know their mostly-hidden spirit, you know their potential like no one else... so maybe you cash-in your retirement fund and you hire that lawyer and maybe you lose your particular battle and all that money, OR, maybe you WIN and you GET what you know your child needs YAY... but then time passes and it turns out that your child benefitted 10% from that change, but now they need more, they need something down a totally different path that will be expensive, sigh...  So you cry over spilled milk, you gather yourself up and you turn and start to walk down that fork in that road and you start over.... again.

 

Now.... this is just the start of a financial drain on a family.  But now think about how many stay-at-home OR part-time moms/dads are NOT adding to our economic system as a country because they are not living up to their potential earning power because they are too busy utilizing their energy fighting for what they believe is right for their child...  Maybe that mom/dad is college educated and has great work experience but they take on a part-time jobbish job so they can be home at 3pm to take their kid to special needs programs or to costly private piano lessons because their child cannot participate in groups and is not easily dropped off by that special-needs geared expensive babysitter you heard about last week who doesn't know your child and it would take so long to explain your child's needs to that you can't find it within yourself to train someone about what your child really means when she says, "Maisy takes the train".... 

 

NOW you can start to see the ripple effect of just how the EPIDEMIC proportion of just my world of AUTISM has the ability to affect your town, your state, your country and your global economy...  Autism is now detected in close to 1 in 47 children in NJ right now... it is truly at epidemic proportions... it is busy severely impacting the stress levels within families and marriages and it is severely impacting our educational budgets and tapping our personal resources as we are propelled forward like wandering mummies as we try like hell to find answers for our kids...

 

And... this is all the frenzy that goes on when these kids are younger than 18 years old. 

 

When they turn 18 the financial burden potential severely increases...  Where will Johnny live? Who will care for by child when I am old or after I'm gone?  Who is going to pay for his services?  Where will they get the services they need?  Where could we move to make a better life?  How do we secure a spot in a group home?  Will soon-to-be 18- Michelle's sibling's entire life be about taking care of her?  NO - I can't let that happen -- so, then... THEN - more financial plans ensue... more draining of accounts for special-needs lawyers and special trusts set up, more and more energy spent on this choosing of individually driven paths as no child with autism is like another... they are as unique as snowflakes, as is their care and the paths to the decisions about that care as well... 

 

The gamut of economic impact starts from highly-priced gluten-free items all the way toward dwindling town- educational budgets and then all the way up to finding a socially responsible way for our economy to take care of these humans that we love and are responsible for, and this care and love impacts the lack of salaries gained from our having to be home (mentally or physically) to do this work.... because, even if you are the main or sole breadwinner, the importance of trying to help your child who cannot communicate properly weighs heavily on your mind during your waking hours... the lack of sleep weighs heavily on your ability to perform well at the job you so depend on, not just for food and shelter but for the responsibility to not just raise your child but to FIX your child and the responsibility to attempt this mostly by yourself... because this didn't work, and now what do you do?  There are so many statistics on special needs issues causing fragmented marriages and i'll tell you from my experience with how many single moms I have met, just lately, who go at this alone -- THIS is a very hard road to agree upon....  when you want to work as a team and as a united front as parents and yet you have this bumpy, extremely unromantic twisty, experimental, emotional, expensive road as the one you must travel... well, let's just say, anyone holding hands on this journey drops the other's hand sometimes...  it's hard and draining and very often the road breaks up the partnership.... 

 

And THAT's what I was thinking on this morning... I truly welcome all comments... 

 

 

 

 

 

4:30.... again.

Yeah, so I'll bet you're wondering how a family can operate never knowing if they will get a full night's sleep.

 

Well, for me, since Alexi's birth, I have not slept the same.  Many moms I have met say the same thing - that they sleep with one eye open and one ear to the ground since having children.  When our house "wakes up" to the sound of "Dora's House Party" blaring at 4am and the click of the hall light goes on and the giggling and chirpy sounds of our youngest daughter's scripting fill the air, somehow we manage to sort of ignore it for a while (like last night)... ultimately one of us wanders in to tell her it's too early, that it's still dark outside, that it's nighttime, and that her sister and mommy and daddy are trying to sleep and if she's going to make noise - she needs to "close the door".  And that works... for 20 minutes. 

 

The long term effects of lost sleep over weeks at a time of early waking are not obvious, but are very insidious.  You don't know if your bad mood or general irritation is due to a real emotion or due to the lost sleep from 2 days ago that you kinda wrote off already.  However, it's very much like how a woman feels during her monthly hormone surge -- the irritation and anger she feels - feel real - because they are, in that moment... the tears she cries from frustration are real.  And the argument my husband and I had the other day, which was ultimately caused by our being snippy with each other, were due to our latest stint of intermittent sleep... I'd put money on it.  

 

So sometimes the effects of living with an autistic child are not so obvious.  There's a high level of managed stress within our house from not ever being able to lay blame on this poor child who doesn't mean to wake us and wreak such havoc within our family.  She has no idea about what we go through and while it feels strange to lay blame, it also feels oddly cathartic to use autism as an excuse for our general family wackiness sometimes. 

 

 

Stealing bread

Gluten free -- that's what we have strived for after completing the BB program - because Alexi's body prefers not to digest WHEAT.  So while gluten isn't so much the problem, ensuring her food is gluten free eliminates wheat. 

 

Easier said than done - especially lately.  Alexi has been getting bigger and stronger and more independent -- all good things?  Yes, but now she's sneaking!  She's going into our fridge, taking a slice of Pepperidge Farm Cinnamon Swirl bread while no one is looking, she hides in our bedroom and eats her coveted slice under the covers - only to be discovered as hardened crumbs when she's asleep....  She's bending the cabinet lock, sliding her nimble fingers up to the holiday biscotti bag, and dragging out a piece that she eats on the fly, all while being her regular self, scripting about Elmo and WonderPets...  she's a sneaky one and I don't want to discourage her craftiness and her independence.....  But I do want to help her gut, her inflammation, her yeast which we are testing this month, her behaviors of late make me so sure that her insides are struggling to get nutrition from the foods that seem fine to you and me and I really want to help her. 

 

It is time.  Time to bring the research to a close and start implementing some of the dietary changes our whole family must make together.  It will be HARD HARD HARD cuz I HATE HATE HATE cooking, shopping, menu planning....  but -- it's necessary...  So, I will do it. 

 

For all of you reading who wonder what research I've done...  there's one video I would recommend checking out...  it's 15 minutes long...  it's a mom-made video - and it's really, really worth the watch.  It's not all we're going to do - but it does the job of bringing you to a certain understanding...  Top Right video:  http://unblindmymind.org/

 

Wish me luck!  I'm gonna NEED IT!   

5 points to remember

So - facebook has tons of useful advice about autism related topics... Here is one post I liked -- as I know for a fact that Alexi DOES know more than she seems to -- and its very easy to forget that fact because she scripts a LOT and talks about Elmo and WonderPets -- but...  I always try to talk to her as if she wasn't scripting and didn't really want to be saying what's coming out of her mouth... 
 

  • Instead of talking about them as if they’re not in the room, remember that they can hear you, and always assume they are listening.
     
  • Instead of assuming a person’s autism defines their character, remember that they get to make personality choices just like non-autistic people.
     
  • Instead of believing that their perspective makes them less reliable, remember that you’re actually skewing your own perspective on autism by making this assumption.
     
  • Instead of allowing the world to teach them their autism is A Bad Thing, tackle the problem head-on and remind them how awesome they are.
     
  • Instead of loving the child but hating their autism, love the child.

3:30 am

Yeah... so since the time change Alexi (and we) have been found often lurking around our house around 3:30am and at intermittent hours beyond that.  Around here, sleep has become, once again, elusive. 

 

Whether her lack of sleep is due to full moons or new moons and giddy internal possible parasites, her perhaps needing a chiropractic adjustment, or who knows what other potential causes...  lately I have been workin' the trend of early to bed and very early to rise, like 3:40 last night, and the hall lights are on, Alexi's scripting is going at full blast, poor Pat can't catch a break before his workday begins, we hope sister Kyra is sleeping through the circus like atmosphere -- and either Pat or I can often be found wandering into her room to remind her yet again that other people need to sleep and to keep her door closed and keep her music on low.  Then, sure enough, it's 10 minutes later @ 3:50am and you find yourself wondering about autism at large, refugees and borders and bombings and on and on.....

 

In the world today, there are lots of things we can worry about.  Not getting a good night's sleep pales in comparison to what other folks in Paris, Iran, Iraq and beyond are dealing with right now... 

 

Sigh. 

miss stuff sometimes

Alexi is doing -- ok. 

 

I am busy researching our next, more holistic approach to Alexi and autism, and while I do that, Alexi is chugging along.  I am reading a nutrition book and working with someone I stumbled across who is leading me down some new paths that could prove to be really exciting...  As we prepped to re-test her cortisol level, she unfortunately missed a few days of Adrenamin (see past post) and because she missed just 3 days -- we were sent into a return of messed-up sleep....  the problem came right back.....  so we happily received our supply and put her back on the Adrenamin and are so pleased to have her sleep patterns slowly returning back to "our new normal."

 

So -- lab rat city right?  Yes...  that's what having an autistic child is like for the parents.  We are grasping at straws, suspicious of quick fixes, suspicious of doctors, reading blogs, attending groups, and sometimes we watch "Lorenzo's Oil" for motivation to go on.  There are so many ways to approach being a parent to an autistic child in this age of social media - it can be overwhelming daily. 

 

Last night, I had to pass on going to a grownup event.  The coordination for timing of getting there&back and having the right care for Alexi - well, it was just not working out....  I know I could feel sorry for myself that I missed out, but I don't.  Other folks might feel sorry for me, but it really is ok.   Parents with unpredictable autistic kids miss stuff sometimes, a lot of times.  It's the nature of the beast, it is what it is....  And it really is ok...  we do get out here and there - very important to do that -- but it doesn't always work out. 

 

It's hard to explain but Pat and I feel such a strong commitment toward helping her navigate autism while raising our other daughter - and this navigation and pull toward being fair is something only a parent raising both an autistic child together with a typically developing sibling(s) can really understand. 

back to square 1

Alexi is soooooooooooooooooooo much better!   We both feel it's due to both a return to school and its regimented schedule AND the weaning off medication.  We are glad to have tried medication, and, because you really don't know the long term side effects of being on meds for years, we are glad that particular intervention didn't work out.

 

I am looking forward to going much more natural in our approach with Alexi now.  Her focus ain't the best lol!  Like I've mentioned before, it's probably like trying to communicate with someone who has 3 TV's on while also listening to the radio with one earplug in.  My voice needs to cut through a lot of static to be able to reach her.  That communication challenge is in combination with her intense sensory needs which only seem to increase with the passing time. She craves constant movement.  She tips back in her chair while eating, she'll get up and do a handstand during a meal because she "needs" to, she spends a lot of time on her ipod playing songs and cutting off the song at just the same point and that does something for her brain, all the while she loves to jump and flop on her bed and/or hang and drop from doorframes because the impact on her feet makes her feel good. 

 

Lately, Alexi has discovered how to sneak into the fridge on her own, steal a piece of "regular" bread (not gluten/wheat-free) and run off and eat that bread say, in our bed....  Grrrrrrrrrrrrr.  AND she loves being yelled at about it because it feels good in her ears to be yelled at and to be the focus of an angry face or voice - she just loves that. 

 

Insane?  Well - that's our normal, really.  And through it all we just love the crap out of this kid.  Thankfully, after she was weaned off medication, her sweetness has returned full steam ahead.  Yesterday she and I strolled down to the playground and she had some swing time... she loves that feeling of flying! 

 

Onward and with each day I get further into my investigation of how to clean out her system as we try to rid her brain and body of inflammation which can cause so many symptoms... 

off meds

Had our follow up with neurologist 8/13 after trying Sertraline (Zoloft) since 6/6 (2 months). 

 

Bottom line - it's all a huge guessing game - for parents and for the doctors too.  Abundantly clear after our visits with neurologists for Lexi - neither one we saw really bothered to examine her, their mo is to give you one drug to "try" after another as they really don't know which could work or not as every child is different....  It's not their "fault" per se, but as a parent it is distressing to hear your neuro say that he personally wouldn't have prescribed Zoloft (sertraline) for your daughter, but that the other doctor is a good doctor and nothing against them, but here... why don't you try Strattera, I've had some luck with it for focus with mild side effects.  Come back in 2 months. 

 

Autism is not yet a science -- it's a mix of so many factors the "experts" are stumped.  I get advice and guidance and help from a plethora of sources - with social media being what it is today - there are seemingly endless streams of articles, advice, blogs, tips and warnings for me to weed through and process. 

 

Since the Spring - we tried different drugs for her without any great luck...  March we tried Quillivant, April we tried Vivance, April we tried Intuniv, all of those were quickly out of her system and obviously not working for her.... then June we tried Zoloft and she's officially off as of 8/29.

 

Yesterday, I took her to the mall, and she was very sensory, clinging to me as we walked, she hid under a clothing rack and tensed while she hugged the pants at Old Navy while I tried to find a gift - all the while she's getting people's stares and concerned looks toward me as I searched the racks as quickly as I could in order to get out of the store.  Overall during the past 3 seasons and especially lately over the summer she's had an increase in screaming (could it be the detox from Sertraline? could it be the lack of brain balance exercises?  could it be that she's starting puberty and there's an influx of hormones?  would this be happening regardless of what we were "trying" at the moment?  When she starts school - since it's an ABA program - they will approach the increased screaming as a "behavior" that they must work to eradicate - they won't give her what she wants without the absence of the scream - therefore teaching her that quiet gets the wanted item - like Pavlov's dogs - the autistic child "learns" not to scream to get what they want.  But we, as parents, know, beyond a shadow of a doubt, that the scream, the bad behavior, is a cry for help... a method of soothing herself, of trying to communicate something, a gut pain or a dizzy feeling or a jealous feeling since her older sister gets our attention at that moment....  we, as parents, we know that our autistic child has thoughts and feelings like we do - but that the demonstration of those feelings is so convoluted and badly communicated that it takes years to understand the screaming and the hitting and the repeating repeating repeating of the same same same things.  "Mommom, we did the dentist" means something -- I'm still not sure what it means -- but she's trying to tell me something. 

 

What next?

 

There is a strong pull for us to go holistic now.  We tried the drugs.  Now, all signs point toward cleaning her of all toxins, of all processed foods.  The reaction she had to even the slightest medication showed us just how sensitive her system is...  super sensitive.  Food and chemicals that don't affect our other daughter REALLY seem to affect Lexi.   Also, there's stem cell therapy that seems interesting and RPM as a method of communication that seems to cut through what she is actually saying that I want to investigate further.  Our local health food store had some options as well - an employee told me that regular rice contains arsenic -- and suggested I buy their arsenic free rice.  THAT is nuts, right?  I mean, just how crazy can we take the natural route?  Rice? 

 

Sigh.

 

I will blog again when I get focused on our next approach.  Know that this is hard, but very necessary.  Our child is crying for our help and can't talk and it's very hard to have a " " normal life - but we do our best and take breaks and take vacations and take this day by day.  It's what we do. 

 

Pat's 2 cents:

Each day is a challenge, each day is an opportunity for success.  As our fellow special needs parents know, it's all Lorenzo's Oil territory. We are the ones who have to solve this; those of us without science or medical backgrounds, most without formal special needs training, those of us who still have to make a living, develop our relationships and socialize, have to find time and expertise that we don't already have.  What I can tell you is that we'll never stop fighting, and we will never find this situation acceptable.  We may run out of time, but we'll never run out of hope or commitment.  We have seen Alexi make some great strides over the years, but there's a lot more we have to do.

 

Stay tuned.... 

 

 

merry-go-round of hell

After spending 2 weeks with Alexi home 24/7 -- one observation is clear.  This girl has every memory she's ever made swirling in her current repertoire -- here's an example:  she was smiling and swinging at the park - and she chuckled to herself and said, "Miss S" while looking very happy.  She hasn't seen Miss S for 5 years -- she was her pre-K teacher back when she was 4 - but I could tell she had a memory of her that was as fresh as if she had seen her yesterday.  Alexi talks about trips to the dentist as if they just happened and it could be 5 months since her last visit.  She talks about Elmo all day long and asks me to say things using his voice.  She is so motivated by baby things, baby toys, and yet... she can learn, she has progressed -- it's almost like her brain is crowded and filled by all these baby things and is therefore unable to let go enough for her to develop properly.

 

I was talking to Pat about this observation and I referred to what she must be going through as a merry-go-round of hell and he thought it would make a good blog title....  here's an article I saw a while back -- it has some explanation for this stuff -- basically it could be due to UNPRUNED SYNAPSES -- here:  take a look: 

 

http://www.nytimes.com/2014/08/22/health/brains-of-autistic-children-have-too-many-synapses-study-suggests.html?_r=0

Endocrinologist

I took Alexi to see an Endocrinologist on the advice of a Neuro in our N. Bergen practice who advised us against trying out of the box herbal remedies (ie: Adrenamin, Adrenogen) without first checking as to possible medical reasons for Alexi's high cortisol in her blood test.... makes sense, right?  ok...

 

History:  BB routinely tests kids' cortisol as part of their blood tests they ask you to run - our Dr. Rosen ran this test and found her level to be high (see previous posts) at 27, and then recently it climbed to 33! 

 

So, I made an appointment with Dr. Klein @ Hackensack's Molly Center for 7/20/15.  Cortisol level of 33 is not enough for her to make diagnosis however - she did check Alexi out for any outward appearance of adrenal issues:  no fatty deposits, no early signs of puberty, no acne, no moon shaped face, no weight gain, no face discoloration, no high blood pressure.  Cortisol blood test only measures "free" versions of cortisol - would need all supplements given before cortisol was tested, when 1st tested, when 2nd tested and when tested using 4x/day saliva test especially 12am test to properly examine cortisol and test for any possible interactions with supplements as to the causation for high level or to test for Addisons, Graves and possibly any small tumors or issues...  Endocrinology is very detail and chart oriented....  

 

Sheesh - figuring out Autism is like going back to school, right?  And I wasn't a naturally-oriented science student.... BUT - I'm finding if you combine science with your gut feelings - you end up being able to make decisions that "feel right".... 

 

In this instance - here's my additional information:  all the autistic kids I know have this same type of "whirring" motor thing our daughter has, many of them cannot sleep, cannot stop.  They vacillate between seeming very low energy (like at special needs basketball where they all seem very droney oddly enough - all the other parents and I claim our kids never are this still at home - they are all over the place) to jumping, climbing, stimming, high energy running all over the place.  My "gut" feeling is that Alexi's high Cortisol level is due to her Autism condition and not something physically "wrong" or the endocrinologist would have seen some clinical physical signs....  Rather than go crazy working on this - I'd rather go with my plan and work toward the holistic cleaning of her system and compare how she seems after she's very, very clean... 

It's our suspicion that as an infant -- her body went into overdrive protection mode when she was so small and weak and was inundated with exposure to too many things at once.  Her early history was that she couldn't kick the bilirubin on her own and was jaundiced to the point where she had to go back to the hospital under lights... then she couldn't defend herself against simple cold germs and contracted RSV and was hospitalized for 5 days after which her doctor insisted we vaccinate her after all she'd been exposed to in the hospital - more more more into her weak system -- then BANG - she evolved into a kid that never got sick, that seemed un-sooth-able, crying and screaming were her main methods of communication... and so it went....  so perhaps her body snapped into overdrive and here she still is..... whirring and whirring and moving needing constant input and activity.... 

 

Currently it is very hard to have her home without summer school session, camp starts in 2 weeks... also hard not to depend on what she craves - input from computers, from TV (she's flicking around on the tv right now with the remote - not watching but flicking between scenes back and forth - hard to imagine what her brain is doing to her right now).....BUT -- it's important not to give in to this frustration and to keep going.....  We have seen her improve so much since BB and hope to do it again next summer.  The natural approach to eating Paleo style, to cleaning out the system using herbal treatments, getting her back to basics -- helping her get balanced -- that's what's calling right now.... 

 

Some changes we do see

Alexi's been on varying doses of an SSRI (Zoloft generic/Sertraline - see previous posts for details) since June 6, 2015.... thought I'd update now... 

 

Overall - we DO see some changes!!!!!!!!!!!  Increased language and an eagerness to use language... she has moments of being more relaxed.....  she has many more moments of increased agitation and obsessive behavior.  After looking over my notes since her start - I'd say it feels like 50% good and 50% bad most days but those are good odds in some respects....

 

Must tell you I'm turning quite anti-pharma since more information flows to my ears and since the news of the mysterious death of Dr. Bradstreet - an obviously alternative, intelligent, and personally-invested (autism dad) doctor... here's one Forbes article in case you are interested:  http://www.forbes.com/sites/emilywillingham/2015/07/20/conspiracy-fears-dominate-life-and-death-of-autism-doctor-bradstreet/

 

There's a huge anti-vaccine autism movement followed by believers that vaccines injured their child...   there's tons of anti-vaccine folks, there's tons of anti-anti vaccine folks....  I watched Dr. Bradstreet's hour-long seminar - https://www.youtube.com/watch?v=NtRxBC3MUow  and I will be honest...  he spoke of many topics I've only heard mentioned by the Brain Balance program...  he talked about possible long-range effects of SSRI medication on kids..... THAT caught my ear.  His talk is worth viewing, he was funny, informative, and smart.  This community lost a good man fighting the fight and open to talking openly about his findings, and he will be sadly missed.... 

 

In that vein, what we are doing is compiling a list of all her progress with this medication, and our next step is to go HOLISTIC on autism's ass (in that research phase now), and then compare her progress.  An SSRI requires a slow weaning process - which we will probably start doing after her next neuro follow-up - and then we'll start some natural approaches mixed with cleaner eating, and I will report our findings FOR ALEXI.  Must note - what is good for 1 autistic child is good for ONE autistic child....  everyone's leaning curve for combatting Autism is completely individual depending on each child's issues...  since the brain stops development at around 25 years old, the one thing we don't have on this learning curve is the luxury of time....  that lack of time requires thinking out of the box for SURE!  Wish us luck! 

 

Also - even though I post to facebook - I welcome your comments here on this blog!  Comment away!!! 

 

 

Cortisol

Alexi's Cortisol level was just retested - and not surprisingly it is HIGHER -- now it is at 33.  Previously it was at 27 which was also high.  Cortisol is the amount of stress hormone you have in your body's blood - the "flight/fight" hormone designed to help you in times of stress.  Alexi is under constant stress.  We are seeing an Endocrinologist 3rd week of July to see what they can come up with as to the cause.  Right now, she has been taking "Adrenamin" an herbal supplement - which her doctor suggested would help with adrenal support.  Not really working...

 

Update on SSRI - she has had some better language days lately, some screamy days.  She is sleeping well lately...  but overall - it's not like I can honestly say the SSRI is working without doubts her change in behavior could be due to the weather, the moon, etc. 

30 days on an SSRI is what they suggest before you make any judgments on its effectiveness - so we'll see!

 

 

SSRI

3 minute video of Alexi doing homework May 2015.... 

 

So when you watch this video, you will see an example of a bad homework session with Alexi.  She is not always this bad.  That being said, it does show her frustration and inability to focus.  The reason we chose to try medication for her in the first place is because, whether a homework or school session is met with this much frustration or not -- she STILL scripts (talks to herself) constantly, talks about the dentist 1,000's of times per day, she still cannot really comprehend what she's reading, and she still struggles with what might just be.... anxiety.  After having tried (see previous posts) Quillivant (a stimulant) and Intuniv (a blood pressure medication) -- we are now officially trying Zoloft (generic is Sertraline) - the only FDA approved SSRI for children.  We are starting with a very light dose - .5 ml.  If we don't see changes after 2 weeks, we should increase dosage to 1ml.  So - some might be wondering - what's an SSRI???  

  

Selective serotonin re-uptake inhibitors or serotonin-specific reuptake inhibitors[1] (SSRIs) are a class of compounds typically used as antidepressants in the treatment of major depressive disorder and anxiety disorders.

SSRIs are believed to increase the extracellular level of the neurotransmitter serotonin by inhibiting its reuptake into the presynaptic cell, increasing the level of serotonin in the synaptic cleft available to bind to the postsynaptic receptor. They have varying degrees of selectivity for the other monoamine transporters, with pure SSRIs having only weak affinity for the norepinephrine and dopamine transporter.

 

So perhaps what Alexi is displaying is scripting and upset manifesting as anxiety??  Who knows - with Autism there's no way to know if something can work with any child unless you try.   And that's what we're doing.... 

 

On a good and positive note -- I recently took a trip away (THANK YOU MY HUSBAND) for the weekend.  I explained to Alexi about my trip... I told her that a friend was taking me to the airport, that she'd be with Daddy and her sister and that they'd all come pick me up from the airport on Monday night.  So she didn't ask for me a lot when I was gone, and then Monday came and she asked my husband a couple hours before they were due to go get me, "Mommy airport?"  For her, this is awesome!  She didn't perseverate (obsess) about my being gone, about going to the airport, but there's no doubt that she understood me when I explained the deal to her....  And with all the repeating, repeating, repeating and the scripting and the screams and the mentioning of the dentist and the crying that goes on here -- she once again proved to us that she understands more than she seems to.  So if we can help her lessen some of this scripting, perhaps we will see more of her true personality which is hidden and masked by echolalia (repeating).... 

 

Cross your fingers!  Thanks for listening!

 

Intuniv out.... next!

Our most recent attempt, after not doing so well with stimulants, was a blood pressure lowering medication commonly prescribed to autistic kids without heart issues.  They have found this often helps to calm them and increase their focus.  The timed-release version is called "Intuniv" and the 3x/day is called "Tenex". 

 

It had been suggested by another neurologist but back then Alexi couldn't swallow a timed-release pill and there was no reasonably priced generic.   When this neuro suggested we try the timed release generic -- we did.  Alexi can now swallow advil sized pills in applesauce!!!

 

So we tried it for a solid 2 weeks.  Problem is her spirit and spunk disappeared.  She became very subdued, introverted, wanted to just be alone and cover her head with a blanket and hang out in her room.  This was on a very low dose as well.  So sad to see and it became clear that this was not the correct approach for her.  If you are reading this and want to try it for your child - you should.  Every child's chemical make up is so different, but we felt that this made her too different and we missed her smile and her connection to us.  We could see remnants of that spirit when it wore off in the evenings, and dosing her again became too hard to do. 

 

So this neuro suggested we take her off and that we wait till it's all out of her system and go for a follow up to see what else we can try...  We are now over the fear of trying medication to try and help our daughter.  If there is something out there that can calm her (OMG she's back to hanging and jumping and tensing but is smiling and seems so happy) and help her to focus on schoolwork and help lower her cortisol (flight or fight) levels, then we are willing to use medication.  There's only a few more things to try -- will update as we go!  

 

 

Stimulants out - NEXT...

OK - so we tried our neurologist's suggestion - stimulants - to see if Alexi would respond in the opposite way a typical person might to a stimulant - ADHD kids often gain focus on stimulants and our main goal here is to get Alexi to attend better in school and in conversation.

 

We tried Quillivant and Vivance - both low doses - both sped her up and didn't add focus.

 

NEXT we are trying a blood pressure medication they have found often focuses and slows down autistic kids - called Intuniv and we are using the generic.  It's a timed release med that is harmless unless you have low blood pressure which she doesn't.  She needs to swallow it whole which now she can do!!!!!!!!!!!!!!  1mg - so a light dose again.  Only have tried 2 days so far, need to give it 10 days or so to see anything.

 

She HAS, however, been having new language lately - interestingly she had these sentences in between trials of these meds and they only lasted 10 hours before washing out of her - so who knows?  Is she growing? Changing? Is it the moon?

 

Figured I'd share them - cuz they are new!

 

Early April:

"Oops, I spilled the lemonade!" -- never uttered such a complete sentence without prompting before!

"I want blue car,  side,  hamburger,  french fries,  soda"  translates to:  I don't want to eat dinner here at grampa's house - I want to go out to dinner in the blue car and get a hamburger, french fries and a soda"  LONGEST sentence she ever constructed! 

 

Keepin' on!  Check back for this trial's progress!  thanks for reading! 

 

 

stimulant effects after 10 days

Started Quillivant (modern version of Ritalin) on 3/15 and wanted to wait to post till I had some results... Well - I have some after 10 days!

 

The neurologist said that ADHD kids either get sped up on a stimulant or it can really work in reverse to help increase their focus, and that we'd know soon enough. 

 

I was concerned starting Quillivant because it's official name is Methylphenidate HCI -- and since A's reaction to Methyl B-12 combined with additional B vitamins was not so good and led me to believe she was "overmethylated" see previous post -- I was wondering if she was going to seem the same as when she had that reaction...

 

CONS:

Well - she's definitely more active, swinging on everything, more awake for sure = up earlier most days and goes to bed later and some nights needs Melatonin to calm down, she has been acting more wired, more revved, increased scripting of favorite lines from shows.  She had one school report that said she seemed a bit off and that and her screaming count was up.  Have seen several instances of OCD and double-stepping, needing all the lights on. 

 

PROS:

2 rare good school reports from speech teacher stating she did new things such as not needing a list of answers to choose from and answering questions more readily, increase in amount of conversation, some increased eye contact intermittently, better question asking, quicker response time ie: I'll ask her to get her socks and she will come down with them on after my asking once, quicker reaction time during conversation in general. 

 

That's what we have 10 days in, more to come! 

 

 

Sleep deprivation??

We wanted to wait the 3 months on Adrenogen, but A's behaviors got so out of control since 1/9 that we decided with her doctor that her clinical response was telling us what to do.  Regardless of whether her cortisol levels could be lowered while taking Adrenogen, her wired, nutty behaviors told us to take her off early before retesting after 4/9.  My suspicion is that she was awake early on Adrenogen more often than we realized which translated to one reason for her nutty behaviors possibly being sleep deprivation!  Poor thing....  this is hard for all of us... 

 

So - on a great note - we switched her back to Adrenamin on 2/26 and the changes were instant!  Her good eye contact returned, she stopped swinging on everything constantly, there was less screaming, increased communication, her sweetness returned, and she wanted to be near us again and spent more time able to just sit with us in the living room....  It's not perfect - she still has some OCD-type behaviors as she spent lots of time asking us to "fly" her in the emptied laundry basket and wanting computer, but her personality shifted back to how it was before and we were relieved , and amazed it happened so quickly.  We are starting with just 1/2 the capsule in applesauce to see if that's enough as it can tend to make her blanket-obsessed and asking for bed early evening... 

 

So far so good except for a 3am wake-up last night chirping to herself in her room - but overall good stuff.

 

NEXT - with this change we needed to wait another week to observe changes before trying stimulant!  Stay tuned!

Wired!

Update is that Alexi has been very wired since switching to Adrenogen, waking early is happening more and more but not a constant yet.  Still hanging in there as we're supposed to let it build up in her system for 3 months before we re-test her blood for cortisol levels.  She would be due for that after 4/9 but I don't know if we'll last that long based on recent revved up and wired behaviors.  In short, constant jumping, hanging, revved behavior, tons of repeating words and phrases, basically she is acting like she's on speed - just unable to calm or relax unless she's asleep, poor thing... 

 

2/17 this past Tuesday she and I had a visit with a neurologist who suggested we try a stimulant medication - sounds crazy I know but with Alexi's brain - a stimulant could have the opposite effect and calm her... In fact, over the years, several occupational therapists have suggested that her behaviors might be due to the fact that her system is low energy inside and she does all the jumping and spinning and bouncing to bring her to what feels normal.  If that were the case, then a stimulant could do that work for her and she may be able to focus and calm down after all.  So I will update when we try it - planning for 3/1 - so stay tuned.... 

Adrenamin vs. Adrenogen

 

GLASSES!

 

So after discussing A's latest issues with Dr. Rosen/Whole Child Center we decided to switch the brand of adrenal support to a different brand to see if that could lower A's cortisol level.  So we switched to Metagenics' Adrenogen 1 per day and will retest her levels after 3 months to see.  This brand came highly recommended from her chiropractor who was the one who suggested A might require adrenal support in the first place years ago, and now her dr. also suggested we try it. 

 

The problem is that she has had reactions already.  She has woken early several times since switching and last night was wired and needed Melatonin to calm down enough to fall asleep.  She's taken the new brand since 1/9/15 so we need time for her body to adjust to the new formula. 

 

Other updates are that the dr decided to cut out all B-12 supplements after hearing that she had some OCD-like symptoms emerge after taking it...  So that's out of her mix...  He told me it is possible to over-methylate and sent me to a link to explain that process - and holy cow there's a lot of info there!  Here it is for those interested in this: 

 

http://www.dramyyasko.com/resources/autism-pathways-to-recovery/chapter-2/

 

In other news - Alexi now wears glasses full time!  She had no adjustment - she took to them immediately and seems glad to have them! 

 

--She just gained the skill of TYING HER LACES!  Just yesterday I heard from her OT that she could do the bow part on the table so now they'll work on doing it while her sneakers are on her feet -- WOOHOOO! 

 

--We recently attended her IEP (education plan meeting held 1ce a year at the school) and she met 11 of her 31 goals!  So she's chugging along really nicely and they added new goals for her to work on! 

 

--Lastly, she is about 60% successful so far with taking pullups away at night!  This is a tough issue for some autistic kids to tackle - many kids have problems potty training for years and we were always glad for the daytime success - but now she seems somewhat understanding about using the bathroom at night and we are waiting for the day where she opens her door herself and trots to the bathroom on her own instead of being awakened to make a pee run.  Cross your fingers! 

 

Pat and I both believe that these improvements are largely due to the great staff at her school combined with the effects of the Brain Balance program combined with her getting older -- she just seems to "get it" more and more and more, there's more language all the time, albeit little bits, but she is developing in the right direction and it's an awareness of her surroundings that is helping her, of that we are sure. 

 

We have an appointment with a new Neurologist to get new eyes on A in Feb!  That will probably be my next update!  Till then, enjoy the cold and snow!!!  Thanks for reading and for your interest! 

 

 

cortisol

 

 

 

 

So after re-testing A's cortisol and vitamin D levels - I am surprised to report her Cortisol level tested higher than before?  How is that possible?  In July it was 26 and in Dec it was 26.7....?????  The changes we've witnessed since she started taking Adrenamin were immediate and have not changed much over the course of the 4+ months -- she started asking for bedtime around 8pm and has slept much much better and has not needed Melatonin.  She also has snuggled with blankets much more and is not really less active but does want to mush with blankets more.  I will be discussing this with her doctor at her 1/6/15 visit -- he suggested a la email to increase the Adrenamin to 2 capsules and likes the clinical progress of her sleeping better. 

 

The vitamin D tested better at 46 but Dr. Yola at BB says ideally D should be at 80 and not below 50 -- so we will continue with those drops as it seems Vit D deficiency is a big problem these days and low levels puts you at risk for cancer. 

 

The other issue at hand is OCD.  Once we started Smartypants multivitamins with B12 we noticed an increase in her OCD -- like over and over and over she's scripting about Kyra's dentist - hundreds of times per day - talking about wonder pets and elmo and repeating and repeating and also she started this funny walk where she step-ball-changed a ton and didn't walk normally.  So - I took out the methyl B-12 and the B-12 multi and it went away.  Once I added them back in - there it was AGAIN -- even though they are water soluble vitamins and dr approved as I asked several doctors and did some googling -- the proof was in the pudding as she got obsessed with our laundry basket -- yes our laundry basket -- and spent much of xmas and 2 days afterwards obsessing with sitting in it and asking for us to "fly" her -- lift it -- (that gets tiring after a while) and man, it drove us crazy.  So now that B-12 is out again, she's back to her usual brand of self with much less OCD and only the occasional ask for "fly" instead of the relentless obsession with it. 

 

Whew - this ain't easy.  Now I gotta go figure out what to do today with the vacationing kiddies.... FYI we are continuing with BB exercises once per day and still gluten free and cut out cow's milk as much as we can.  It's always good to get this info out in the world - thanks for following this blog - I hope it helps some folks out there.....  

 

Happy New Year!  May 2015 bring good things to you and yours! Onward!!!!!!!!!!!!! 

Re-evaluation results

 

 

Alexi with the BB gang on her last day!

 

 

Monday, December 15, 2014, Pat and I met with Dr. Yola in Allendale to review Alexi's re-evaluation AFTER her 2nd round of BB....   Overall -- definite progress on paper but she's far from "done" -- but really good stuff.... 

 

Here are the specifics:

  • First and foremost - Alexi got rid of one more primitive reflex!  3 down, 5 to go!
     
  • Next - BB discovered that she still has mixed hand usage dominance, but that she now has right foot and right ear dominance and has left eye dominance.  This is important because the brain "decides" which side will be dominant for all kinds of tasks very early in life - and with her struggles Alexi's brain was not deciding before and still has not when it comes to using her hands. 
     
  • Her core muscle progress was good -- supine went from age 3 to age 7, lateral core went from age 6 to age 10, prone core stayed the same.
     
  • Her Proprioception (where you are in space) increased from age 3 to age 5.
     
  • Her Synchronization (body moving together) on the balance beam increased from age 6 to age 9 and her ability to "dance" or move around using both arms and legs increased from age 5 to age 8.
     
  • Her eyes' ability to move correctly increased -- her ability to perform slow/fast eye movements increased from 13% to 47%,  and her ability to keep her eyes still while moving her head increased from 53% to 93%.
     
  • There were some eye movement skills she was not able to gain due to lack of understanding of the directions....
     
  • Her auditory processing has stayed at an age level of 3.
     
  • Her ability to identify smells increased from 20% to 47%.
     
  • Her maturity of balance and equilibrium increased from 13% to 40%.
     
  • Her ability to use small muscles (fine motor) increased from age 5 to age 7.
     

So that's the overall on paper evaluation.  Dr. Yola encouraged us to get Alexi out in the world to build and increase these skills -- physical activity (she had started basketball last week) and social opportunities.  Overall Alexi had great progress this round -- we found out her Cortisol level was too high and she sleeps much better due to taking Adrenamin which supports her adrenal gland's production of adrenalin.  Also we found out her vitamin D level was low so she's been taking that supplement as well.  She does have an increased awareness of her surroundings and how the world works - she's been reading much more and is having the best school year so far.  She's adding 2 columns of numbers in math and is reading a lot more words on menus, on signs, and she reads us her daily notes every day after school....  

 

 

There's less screaming and more language.  There's excitement on her face when she sees people she recognizes and she seems happier. 

 

We are so grateful to the staff of Brain Balance for helping us with Alexi.  We are touched and moved by all the support our friends and family have given us during this process. 

 

I will continue updating this blog as she gets her cortisol and D levels retested 12/24 - my suspicion is that we need to cut down on the Adrenamin as she wants blankets and bedtime too much - but I'm not changing anything until the bloodwork comes back so I will update as we go! 

 

Happiest of holidays to all who are reading this! 

 

last session tomorrow

Alexi's last BB session is tomorrow.  Wow....  hard to believe and yet, with all the driving and the home exercises we've done, day after day, perhaps I can believe 6 months have passed since we started session 2 in June...

 

The great news is that it takes about 6 months for the work on the primitive reflexes to show real progress -- so we really hope to see some good positive changes from this point forward, especially since we will continue to do the home exercises from this point forward. 

 

Tomorrow we will be scheduling her re-evaluation - they will compare how she was when she started session 2 to where she is after finishing it -- and I will post those results!  Can't wait to see how she does! 

 

She was wonderfully engaged this Thanksgiving - she even sang during our sing-along.  It was great to see her smiling at the table and to see her interacting with our family and our friends during such a great weekend.  We are thankful to the staff at Brain Balance for working so hard with Alexi and for the good fortune we had for being able to put her in this program for the second time.  Our fingers are crossed for ongoing progress....  Hope you have a wonderful start to the holiday season.... 

slow and steady

With only 8 BB sessions to go in this second go round - we are starting to see some changes I'm thrilled to note.

 

Alexi has recently started to get more interested in reading -- like she picked up a words-only book of her sister's and flipped through and was excited to pick out words she knew!  "family".... "like"...."together."  So the other day I sat down to read with her and pushed though her usual resistance to just read the same book over and over and stim while looking at the pictures.... after I read most of the words and paused for her to read a word here and there, I did something new -- I asked her to "find the word dinner on this page Alexi" and she did it and did many more.... willingly!  Pat has noticed she's picked words off his menu and in her environment like on store windows and on signs.  That is new and very exciting to us!

 

Also we've noticed that Alexi is a little more connected to us and ever so slightly more engaged in conversations with us. 

We have also noticed a LOT more OCD type behaviors, she started taking 2 steps backwards before going forward, she does lots of word repeating and things seem to be happening in 2's lately such as repeating a word or number 2ce or drawing 2 lines where only one is needed.  Also new but good are her interruptions and jealousy if we talk to Kyra too much!  With her increased awareness and improved interest in socialization there comes the challenge of engaging and including her in every day social situations - this is where her lack of language skills can be downright frustrating for her and for those around her...  she so wants to engage with us but lacks the ability to do so which often leads to tantrums and behavioral issues.  Like the other day at the diner - I took the girls (off from school for 2 long days) to lunch and, where in the past, A used to sit there and need to play with toys or books shutting out the world, this time she sat without any distractions eager to converse with us.  Here's an example of our conversation - my answers are in ALL CAPS..."Mommom", "YES, ALEXI" "Caterpillar", "CATERPILLAR, OK" "Yes, caterpillar"...  "Mommom", "YES, ALEXI?" "I like to jump" "YES YOU DO LIKE TO JUMP, THAT'S TRUE" "Mommom" "YES ALEXI?" "9" "9?" "yes 9"  "mommom?" "YES?" caterpillar mommom, dentist...  all done at the dentist"  and then there's me trying to be fair and fit in bits of conversation with Kyra during which Alexi got louder and more insistant on telling me about the same topics about jumping and caterpillars and 9 and elmo is red -- don't get me wrong -- I LOVE that this is happening -- it is awesome, tiring, wonderful and tiring and progress and exhausting... there it is... 

 

 

 

2nd progress report

Overall a really good progress report. 

 

Best way I can explain Alexi's issue with development is this: a baby coos before they turn over to do tummy time, and then they pull up to crawl, and then they pull up to stand, and then they walk...  The BB way to explain autism and other developmental delays they work with is that these steps didn't happen on time, even if it seemed to the parents like they did.  There are parts of Alexi's brain that function at her age level, and there are those that function way below her age of 8.  So I do exercises with her 3x a day (I try to do 3x, sometimes just 2x) and BB does exercises with her 3x a week to strengthen the brain sections that are behind to get them caught up so all the sections can work together. 

 

During this progress report, it was explained to us that the order in which we can see progress happens in the same order as human development.  So the reflexes that are behind are catching up in the order in which they were supposed to develop.  Make sense? 

 

So for example, in regards to her core muscle strength and development and order of development -- A's prone core, her "tummy time" core strength, as it is the first skill that should develop out of these core strengths, has been met and is that of a 10 year old!  That was the case when she first started BB as well.  Next, in proper development, would be her lateral core strength, those muscles she would use to "roll over" if she were a baby...  this skill has increased from age 6 to 7 to now 8!  The next to develop would be her ability to sit up -- so her supine core strength, from doing exercises such as sit ups, went from age 3 to 4 to now 6 out of 8!  The last core ability is that of pulling up to stand, which is called brachiation -- she started at age 4 and has progressed to age 5, so that's the last one to develop....  the correct order of development.... just years delayed.  I just find this so interesting....

 

Other updates from last week's progress report --  A's ability to move her eyes back and forth, like for reading, has increased from a level 2, to a level 4 and at this latest report, she was at a level 7, numbers, not age.  The goal on this ability is 15 so she still has work to do.  Another example, her ability to move her eyes separately from her head movement, called VOR, increased from the initial level 8, to 10, and at this report to 12! 

 

In other news, her ability to use many brain functions to walk back and forth on the balance beam has increased from 6 to 7 to age 8!  Her rhythm and timing increased from 4 to 5 to now age 6 and finally her balance and coordination has increased from age 5 to now age 8!

 

A great report...  adrenamin is still working to help her sleep.  we are in a good stretch...  thanks for reading! 

 

 

 

 

 

changes

Alexi has been more tuned into her environment while we drive back and forth to BB.   The other day she noticed a store sign and she pointed out one that said "FOOD" to me, like got my attention and told me -- that's new, she's noticed playgrounds and swimming pools we've passed before, but noticing and reading and telling me about signs is new!

 

She received 3 stars today at her BB session!  She's sleeping well lately and we're in a good stretch with the Adrenamin easing her into an 8pm bedtime... 

 

 

pronouns

 

 

Since starting Adrenamin, it could be coincidence, but A has started understanding a skill she's worked on for a loooong time - Pronoun usage.  Here is a short video of her getting the answer correct.  I cannot say if it's the Adrenamin keeping her calm enough to absorb the material, or if it's the culmination of the brain exercises at Brain Balance, or if it's just her normal development.  All I know is it is progress... 

 

 

 

 

charlie the cat

 

 

 

After years of wanting a family pet, but not feeling ready, yesterday afternoon we adopted a 7 month old tabby and named him Charlie.  I wanted to make sure we got an extremely tolerant cat - one that didn't scratch or fight quickly because with Alexi, you just never know what she's gonna do, with animals especially. 

 

After prompting Alexi to pet the cat several times, she finally got some alone time with him.  In the autism world - "spontaneous language" is coveted - that's language that comes from inside the person that's not about wants and needs...  I'm thrilled to report, Alexi had some spontaneous language with Charlie!   She was smiling while looking at him and commented, "ears cat"... and then said "tail cat"....  then, "necklace cat".... and then she said, "heart".... 

 

:)

Bloodwork and adrenamin

So during this 2nd go-round of BB, the initial bloodwork we did tested her levels of many things including things like glucose, potassium, bilirubin, cortisol, TSH, and ferritin.  Turned out, the 2 things that showed up were that she had low levels of vitamin D (now supplemented) and it also told us that her Cortisol levels were high.  For that, her pediatrician suggested that we give her a supplement called "Adrenamin" which would help support her adrenal gland to avoid its "burnout".  From what I can gather, there's some reason why her body was in a constant state of "flight or fight", and it apparently had a high level of adrenalin pumping through her blood and therefore she had LOTS of energy.  It's true - we've always felt like hanging out with Alexi was like spending time with a whirring motor, she was constantly on the hunt for stimulation of her senses and was never really able to sit still.   

 

So, upon this finding, we started her on Adrenamin on Thu, Aug 21st (almost 2 weeks ago) and are (don't want to jinx it) starting to see her calming down!  For the past week or so I definitely have noticed her to be more sleepy near bedtime, we have not used the sleep hormone Melatonin since starting her on Adrenamin, and she has started yawning and asking for bed around 8pm lately.  Another change I noticed was yesterday at our local Labor Day Street Fair.  I took both girls and normally need to keep a close eye on Alexi to make sure she stays with us in a crowd as she gets distracted inside her head and doesn’t keep up with us.  She was a bit different yesterday as she stayed with us and did not wander.  I kept turning around to check and she was right with us for the whole hour and 1/2, so much so that I found myself complimenting her numerous times for following along so well and hence – the reason for this post.  Summer is coming to a close and I must say, while A has not had as many changes and improvements in her social behaviors as she did last summer, she is having some other types of improvements that are just starting to show now.   In fact, she and I just read through 3 books without her jumping around -- she sat still, did a lot of the reading herself, and is now sitting still (wow) watching Wonder Pets on TV!  A definite improvement from having to jump while watching and having to play with toys while the show plays.  This is definitely different I am sure! 

 

Very exciting! 

 

So, after that initial bloodwork, we did a 2nd and final test called a CYREX panel which tested her sensitivity to a panel of different foods including commonly used gluten substitutes which could also cause inflammation inside her body.  Alexi's results came back with a moderate sensitivity to cow's milk.  So now - Alexi will be on a very common diet for autistic children, the GFCF diet which stands for gluten-free and casein-free. 

 

As we enter the school year and Alexi enters 3rd grade, we will continue to go to Brain Balance 3 times per week, we are continuing with her home exercises 2 - 3 times per day, we will be changing her diet to exclude cow's milk and continue avoiding gluten, and we are giving her adrenamin, vitamin D drops, a multi-vitamin, fish oil supplement, B complex vitamins in oral form, and that's where we are! 

 

More updates as I see changes -- thanks for reading!  Please feel free to ask me questions or comment on this site!

bloodwork and adrenamin

1st progress report

So we had our 1st progress report and here's the skinny on that:

 

There has definitely been some measurable progress that BB sees when doing their specific exercises with Alexi!  She's moved up notches on their bar graph - they see some good progress on her ability to move her eyes back and forth like you do when reading, they see improvement on her eyes' ability to focus, they see good progress on her ability to withstand having vibrating sensors on her wrists, they see an increase in her proprioception skills (ability to feel yourself in your body), they see increase in her core muscle strength, her side core muscles and her ability to pull up on the monkey bars.  She has increased strength on the balance beam and her rhythm and timing have gotten better.  The big change they saw was in her ability to use opposite hand and leg movement - sort of like dancing - and she uses her head as well - this type of coordination takes brain strength that she is lacking and she has increased in this area which is good news.  They suggested we get a game like Dance Dance Revolution for the wii and see if she can get into using her body in this way.  

 

Overall at home,  we have not seen too much change in her yet.  It could come tomorrow but she seems to be the same for the most part.  She has retained the same level of affectionate behavior and the same level of environmental awareness.  The one area where she has increased has been independence now that I reflect on the past couple months.  She is helping herself more often - like to things she's not supposed to - like getting things out of the fridge for herself, getting things out of the cabinets - annoying for me but in the grand scheme of things - I would record that as an improvement...  

 

Lastly, this bb has suggested that they work on lessening Alexi's primitive reflexes first BEFORE working on cognitive abilities - so they only take her for 1/2 hour sessions.  After the progress report, I asked if they could try doing the full hour for her since that worked for her last summer when we saw lots of changes.  Yesterday they kept her for the full hour and they will do so for the next 2 sessions to see how it goes.  My thinking was that she needed the additional challenge to keep engaged -- so we will see.  Today - we do the Array #4 bloodwork to see if Alexi has any sensitivities to often-used Gluten replacement foods which have shown to often cause inflammation as well.  Will update on those results when they come in!  

 

Onward!  Enjoy the rest of summer! 

 

 

Hungry!

Paleo diet was HARD but interesting to try -- no foods man created - just meat/veg.  Found out Alexi likes butternut squash fries (baked with sea salt and olive oil) and zucchini "chips" and we experimented with all sorts of recipes -- a good learning experience.  Poor Alexi was just extremely hungry constantly during this run and was like a caged animal asking me for snack and lunch all day long, even right after eating a plate of meat and veg and fruit. 

 

As of yesterday's meeting at BB, Alexi is now switched to only gluten-free as we re-introduce the other foods back in -- and then 3rd week of August we run additional blood work to run a CYREX panel -- this will test for cross-reactive to gluten foods.   I must admit I'm still confused however - what they're telling me is that Gluten is the most common cause of inflammation so it should be eliminated.  I have seen the effects in Alexi for myself so I'm clear on the fact that gluten needs to be removed from her diet.  But then there are ingredients that are commonly used as replacements for gluten in crackers, flours etc. that can ALSO cause inflammation.  These are the foods that they will test for an issue with.  These can cause leaky gut.  Leaky gut allows back and forth flow between the gut and the rest of the body and this is not good. 

 

For now we can ease up on diet issues, book the blood work appointment and i'll check back in after her first progress report next week! 

the.... diet

so last Saturday, after getting blood drawn for all kinds of impending test results, Alexi went Paleo - basically eating caveman style - meat/fish/veg/fruit/coconut and that's about it.  I have been busy shopping and preparing sweet potato fries, banana coconut macaroons, chocolate avocado sweetened with stevia ice pops, organic chicken patties, green tea with stevia iced tea, carrot fries, and alexi's been doing pretty well I must say.  so far, all that's changed has been her poop - very normal looking as opposed to before - but we're on the lookout for changes and I'll update if/when they come.  cross your fingers! 

2 more changes!

2 quickies but goodies:

 

  1. Alexi modeled after a girl at the playground! woohoo!  This shows an increase in her environmental awareness -- autism entertains most kids in their insides so that they don't have much interest in other people -- hopefully BB round 2 is building up her right side= the social side of her brain and this is a sign of that!

     
  2. We visited friends with a beautiful pool this past weekend and the dad taught Alexi how to swim under water!  It was so cute to hear her say "I want under" and watch her try it out over and over -- she even let him put a variety of goggles and masks on her.  By the end of her day she was grabbing the mask or goggles herself, putting them on herself and tossing pool toys in and swimming down to get them!  I was very proud of her and very thankful to our friend!  

Changes so far

What we're noticing overall since the last post are mostly 2 things:

 

  • Increased connection to us and others
  • Increased rebellion

 

Alexi has increased her connection to us - like right now, I'm watching the kids in the pool and Alexi is following and calling after Kyra constantly -- she didn't used to do that, she used to just splash around by herself content to water gun the neighbor's yard --right now they're actually playing together and I'm noticing Alexi is searching out Kyra in the pool!   Also lately she is saying "hello mom" several times per day, at BB she repeatedly says hello to Mary who works with her and overall she is asking for hugs a lot more.

 

She is also being "bad" more -- not doing what I ask -- that's new during this round 2.  I'm so used to Alexi following what I tell her to do - it's a little disconcerting -- but it's a healthy phase that she needs to go through -- she waits till I leave the room and then she looks around for something to do she's not supposed to do -- ie: eat out the sugar bowl, go on my computer, pour water on the bathroom floor during her bath, pour water on her sister's keyboard, turn the tv on in the basement...  all annoying but good in a way.

 

As I'm sitting here watching them swim Alexi just spoke a new sentence!  "I want Kyra to stay" -- she's calling and screaming for Kyra to stay in the pool -- totally new! 

 

Next we need to do the bloodwork to check her levels - her appointment is set for next Saturday, after that, she goes off gluten again, off lots of foods until we get the results - they want the best version of her in order for her to receive the best benefit of the exercises....  Hard for me, but will be worth it.... 

2 weeks in & some changes!

So far so good! 

 

Yesterday was A's 7th session! 

 

What you look for early on are any changes in her behavior.  Luckily we have seen some! 

 

After the first few days, Alexi started getting a bit crabby and there were lots of "NO"s.  We went to AC Moore with Kyra to get beads for her end of year gifts and Alexi WOULD NOT stay with us - she normally stays with me in stores and never wanders off -- well, that day she kept going into the next aisle and not listening to me -- while annoying -- I took it as a good sign - because what you hope for as a BB parent is terrible two type behavior -- and this certainly seemed like that!  ASD kids don't really go thru the normal stages of development - terrible two's being one of them - so one of the things they say to look for is terrible two behavior.... 

 

So then, last Sunday/Father's Day, about one week after starting, directly after doing her afternoon bb exercises, she snapped back into her sweeter mode where she really looks at us and stopped saying NO to everything...  we had a really nice evening that Sunday and then the week following she stayed in that sweet mode. 

 

The biggest change:

We went to the playground and met up with her classmate "K" yesterday -- when we got there she couldn't find him and got really upset while yelling his name loudly about 4 times with a sad face -- THAT -- for those of you that don't know -- is a big deal!  It shows a few things:  she used an elevated voice, she had a sad face, she was upset she couldn't find her friend, she called out for him -- ALL very appropriate things and very unusual for her to care where someone else is -- shows right brain activity (environment, social) -- so K's mom and I were very happy seeing this happen right in front of our eyes! 

 

Will update on upcoming diet changes soon! 

brain balance round 2 has begun

Today Pat and I are feeling so incredibly grateful to all those people who have helped us to send Alexi through the Brain Balance program, not once, but TWICE!  We could not be doing this without all of you and we are so thrilled to send her through again.  THANK YOU so very much.

 

Yesterday was A's first session!

 

I was able to observe A during her 1st session through 2 way glass!  It was amazing to see what they do with the kids and how compliant the kids actually are during their bb session.  Alexi must have had some muscle memory going on - she was GREAT with Mary, her newly assigned "teacher" and she did wonderfully!  While observing and simultaneously hearing Josie tell me all about what each exercise was designed to work on, it was wonderful to imagine how much A will improve in the coming weeks.

 

So to let you know where we are - right now she's started with the 3 - 1/2 hour sessions per week, we have started with the home exercises which take about 15 minutes each morning before school or camp, 15 minutes when she gets home, and 15 minutes each evening -- all done while listening to her bb music thru her left ear which stimulates the R brain function.  The exercises at BB are different than what we do at home - this whole program is multi modal - so we all work like gangbusters on affecting her weaker hemispheric brain to increase function using music, smells, core strengthening, balance, eye exercises, tactile, AND several exercises designed to rid her of her primitive reflexes which are holding her back...  It sounds like a lot.... it is....  Then there's the DIET!  I booked my session with Dr. Becker to go over the nutrition counseling and bloodwork for next week - we will test her again and then comply with removing the foods that cause inflammation inside her gut -- sort of like a cleanse...  When her system is free of all that bothers it -- it will respond much much better to all that we are working on... 

 

It should be a very interesting summer!  And A responded well yesterday to her first session and to all the new folks she's met - so onward we go!!!!!!!!!!  More soon! 

 

cousin love

 

 

eating rice cakes together!! 

 

 

 

 

alexi wrote the animal name and had g draw the picture!

 

 

This past weekend, my sister and niece came for a visit from Chicago.  Leading up to their visit, I let Alexi know that they were coming on Friday.  Every morning that week, she would say their names as if to ask if today was the day they were coming.  This act of inquiring about upcoming events and people is new since bb.  Usually when my sis and niece come, alexi fades into the background while "g", my niece, plays with Kyra.  This time marks the first time where this was not the case! 

 

G is only 6 but recently had an Autism awareness lesson section in her school and she took pride in the fact that she has a cousin with ASD.  She also has a few children in her school with ASD so her knowledge about them is increasing.  During our visit, g took special care to include Alexi and spent time alone with her too! 

 

What was special about this visit was that while Alexi had an increased desire to spend time with her aunt and her cousin, her cousin also wanted to spend time getting to know her better as well. 

 

Kudos to her school for teaching them about kids with special needs...  and a big kudos to my sister and brother in law for their tremendous support and for always making sure these cousins get time together to build memories! 

 

 

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