Songs for Lexi

Songs for Lexi

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?  

 

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