Songs for Lexi

Songs for Lexi

$$$

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... 

 

 

 

 

 

Blog Stats

  • Total posts(117)
  • Total comments(59)

Forgot your password?