I'm Not Going to Lie: I'M FED UP!

I am going to try to keep this post from sounding like a list of grievances, but I can't make any promises.  I wanted to start this year fresh and have the most positive outlook for our future, but we are off to a rocky start and I'm mad.  I hope to turn this anger into something constructive and maybe putting it all out there will help.

First of all, to all of the rockstar ABA therapists in this God forsaken state: Thanks for Nothing!  So not only did I fight for your rates to not be cut by TRICARE, but I was quoted in one of the articles that painted the Pentagon into a corner, and kept your rates as is and helped to raise awareness on the importance of ABA services for military families with children on the spectrum.  Since then, one of you showed up late or cancelled nearly every appointment and has refused to listen to our input which pushed us to look for other options.  Another of you, said you would meet with us and could give us four hours a week and then called the morning of our assessment to tell me you would no longer be providing services to children in this area.  Another of you, accepted my son as your patient and had us switch over all of our authorizations only to call us the week we were supposed to start services to tell us you moved back to your hometown for personal reasons.  What??  Who are these people?  I am beginning to get the feeling that this profession has absolutely no accountability or standard.

To the great state of Alabama:  So how is it that you have one of the highest percentages of children with disabilities of any other state in the country and you have the worst services?  How is it that a state with so many special needs kids does not deem it necessary to have any type of special needs preschool education option?  How is it that you can still be dragging your heals on mandating health insurance in this state to cover autism services?  How is it that you can pay your high school football coaches over $100,000 a year and you can't pay special needs teachers and therapists enough to stick around?  Are the leaders in this state so hostile to education that they are blind to all of their shortcomings?  I told you, I'm mad.

To the Government:  Thank you for sending us somewhere where our child has regressed and we have no options for decent care.  I am so glad we did Occupational Therapy for years, only to be sent here where we were waitlisted and then had services for two months and then were waitlisted again...awesome.  I also appreciate when I call to ask how on earth it was okay for us to be moved here and beg your staff to give me more options I am told this area is just really lacking....really?  I hadn't noticed.  I could write an entire post on your military health insurance issues, and how children on medicaid are often getting better services than my child.  Or how providers at our potential assignments have told me already they aren't even taking on new TRICARE clients because TRICARE pays so poorly and inconsistently.

To our Pediatrician:  I don't know how your practice can continue to operate with how poorly it is run.  For me to have to call everyday for three weeks to beg for a referral for my child to be able to see a psychiatrist because you don't feel capable of prescribing needed medication is unacceptable.  And the fact that I only got through to talk to an actual nurse on one of our very worst days and I was only put through because I demanded it and you could hear my child screaming in the background is maddening.

To Everyone who claims my son is growing out of or will grow out of his autism and that this is just a phase:  My God, I hope you're right!  I don't know why I am worried about therapies and services at all, he just needs to mature, right?  I don't know why I have spent hundreds of hours traveling and in waiting rooms, I'm sure that has nothing to do with why he is verbal or why he can manage himself socially when in a preferred environment.  I am so glad he is four years old and can finally eat with a spoon without getting food all over himself or the floor, I am sure that just happened, forget the months of therapy and the countless meals of hand over hand help with utensils.  He's just a little quirky and hard headed?  Are we talking about the same child, because I'm talking about the child who I had to literally drag and carry out of the house this morning kicking and screaming because he had to go to school today, the same school he did totally fine at yesterday.  If you are not taking care of him 24/7 and witnessing the struggles day in and day out, if you are not an educator, if you are not a medical provider, you can keep your diagnosis and opinions to yourself.

All of this being said, in the worst state, with some of the worst providers and worst availability, we are fed up, but we don't give up.  If we had given up we wouldn't be trying a new school this semester, I wouldn't have spent hours on the phone this morning trying to find more providers, I wouldn't have fought that boy out of this house this morning so he could receive his district services, I wouldn't be pushing the baby's nap this afternoon so we could make it to Speech therapy without childcare.

And he hasn't given up, he has regressed in some areas, sure, how could he not?  But there is a light in his eyes that always shines bright and on his good days, he can do anything.  When he is surrounded by the things he loves and the setting is right, he can make gains and have conversations and say sentences I never thought he would be able to say.  His favorite movie to watch is Planes Fire and Rescue.  And even though I have heard the movie a thousand times, until he was singing the soundtrack the other day I never heard the words.  While I admit this post has been more negative than positive, I leave you with this:  He will still fly.

"Still I Fly"

There' a time in your life
When the world is on your side
You might not feel it
You might not see it
But it surrounds you like a light
Makes you stronger for the fight

Never letting go
Gotta learn to grow
Watch me as I touch the sky
Still I fly
Now I know it's what I gotta do
Find a dream that's new
Give it all I got this time
Still I fly
Still I fly

Feel the wind all around
All the courage to be found
Who knows what's out there
I know I'll get there
Oh off into the sun
I know I'm not the only one that's

Never letting go
Gotta learn to grow
Watch me as I touch the sky
Still I fly
Now I know it's what I gotta do
Find a dream that's new
Give it all I got this time
Still I fly
Still I fly
Still I fly

Breathe it in
I'm gonna shine
It's my moment
Gotta live and live it right
I'm flyin
Flyin so strong

I'm movin'
I'm movin'
I'm movin' on

Never letting go
Gotta learn to grow
Watch me as I touch the sky
Still I fly
Now I know it's what I gotta do
Find a dream that's new
Give it all I got this time
Still I fly


~Spencer Lee

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