Posted by: Leigh Reynolds | April 15, 2014

My Autism Rant

I write this understanding that I am only a year and a half into this life with autism. I know I have a lot to learn and understand that I’ll likely make many mistakes along the way. I am sure my perspective will evolve and hopefully become more informed as time goes by…

I have also learned that if you are wrong, under-informed or just see something differently than others living their version of life on the spectrum, the autism community will not hesitate to correct you.

But here’s where I am today and here’s my rant.

Just a days after Wil’s second birthday we held the letter that told us what we already knew. What I didn’t fully understand then is how much it did NOT tell us and how much we’d still be trying to figure out and maneuver on our own more than a year later. Likely for a long time. Hopefully not forever.

The first year was a whirlwind, but we made our way. Because Missouri has the First Steps program and we were enrolled already due to Wil’s diagnosed speech delay, we had a team helping us. It meant regular meetings with a  case coordinator, and speech and ABA therapists coming to our home 3-4 times a week. It was a lot to juggle, but it was a safety net. I had someone to call on and a team to ask questions. They worked with the entire family, they helped me find Wil’s special needs pre-school, recommended OT when we noticed Wil’s tip-toe walking, listened to my fears and celebrated the progress… on and on. All this for $33 a month.

Then Wil turned three and it all stopped.

You know the old expression about being up a creek without a paddle? Well, I had been in a boat of sorts – sometimes the wind would pick up and move us quickly, but we had a rudder and a sail to catch the wind and a crew to help adjust the sails to guide our direction. On November 24th, 2013 we were sent out to deep waters – rudder gone, no one to help adjust the sails, sharp winds catching us, propelling Wil and us out into the rough, open seas. At least that’s how it often feels.

We got Wil enrolled in the Early Childhood Education Center through the school district. He started Thanksgiving week 2013. I like them; they have speech, OT, PT, ABA and every other letter of the alphabet you can think might be needed. Wil’s teacher is kind and cares about the children in her care. But she has 10 children in her care and they all have different needs – Downs, autism, severe ADHD, muscular dystrophy, on and on. And that’s just the afternoon session. The numbers and issues double when you add in the morning session.

Under the Americans with Disabilities Act (the ADA) and Section 504 of the Rehabilitation Act (Section 504), “all elementary and secondary students with disabilities are provided an equal opportunity to participate in, and benefit from, a public education.” And that’s great. It is as it should be that all children are afforded an education. But how much can we really expect? Is it playing out as intended?

Yesterday I was in Wil’s classroom for a parent observation. The class was around the smart board and the speech therapist was doing an interactive reading of “The Very Busy Spider” while the room teacher and another sat with and worked with the kids. Wil had his own special helper. I could tell the speech therapist knew what each child needed to work on, as she engaged each of them a little differently. They were doing good work, they had great energy and were focused as much as they could be on each child’s individual needs. But I left knowing it was not enough for Wil.

I can ask for an IEP meeting. (Something no one really teaches you how to properly handle – but that’s for another rant.) I can push for more than this daily group speech and the twice a week, 15 minute 1-on-1 he gets. I can go so far as to demand a lot more, get a lawyer even… but how will these wonderful but over-worked and under-resourced teachers and administrators meet my demands? How will they then balance the needs of the other children in the room – each one a precious child of parents who love them and are fighting for all they can get for their child? How will an antagonistic relationship between the school and his parents help Wil?

I just don’t think this is a great  option.

So how about private speech – the kind of speech Wil’s diagnosing doctor and First Steps team told me he needs? Well, my insurance counts speech and ABA against the $5,000 deductible. So, I can get him in therapy, but I have to be prepared to pay that amount myself first, then cover 20% for the rest of the year. And incur this expense every year. (While I am still paying of the deductible and 100% more for last year and paying for his special needs daycare.)

We do OK. I have a good business, but not a great one. Patrick just got a raise, but not a great one. We have cut things out and trimmed expenses where we can. We are sharpening the pencil and re-examining the budget again, looking into social security for Wil, maybe the state insurance program for kids, clipping coupons, turning off the water and lights, and cutting corners anywhere we can… And we still can’t afford all he needs. Even if I could, I am not sure I know what that is.

I know he needs private speech therapy. Does he need more ABA? If I were to get ABA, how do I find the right therapist – one who isn’t too ‘old school’ and of the thinking that we need to ‘break down what’s wrong in him to build him up the right way.’ Frightening, appalling and painful – but they are out there. I know, I had one in my home once. Once. Our next ABA therapist was wonderful and loving and amazing and kind – but it still was sometimes a little off. A little too comply/reward training – make Wil fit our box rather than understand and connect with him where he is… see his glorious view.

Maybe I look into the Early Start Denver Model; Wil is not too old for this yet. I have heard great things, it sounds appealing, but it is not covered and I am not sure who offers it. Maybe I should buy the book, teach myself and carve out the 20 hours a week needed? I could look into Mendability – the monthly fee is not covered, but the Ted talk was inspiring, the  research seems legit and results appear to be great. Plus is isn’t 40 hours a week, it’s about an hour twice a day. Or maybe I pack up and spend a week at the Autism Treatment Center going through the Son-Rise program. I have heard great things, and it’s only a few thousand dollars a session. It’s supposed to give me all the tools I need to work with Wil at home 20+ hours a week.

I have seen Autism the Musical. I follow Carly Fleishman and Carly’s Voice. I’ve read The Spark and seen Jacob Barnett‘s Tedx Teen Talk. All of these people with autism are unique and magical and brilliant, and all were tapped into and brought out in a way very contrary to ABA, OT and speech. Creatively, with love and brilliance. Maybe I trust my instincts and convert the garage  into our own school for Wil and we make our own way. No idea how I’d make a living that way, but it’s an option.

What about so many others in the same boat? I  mean 1 in 68 children is diagnosed with autism – more really, since this recent study only accounted for children 8 and up.  What about all the families that were already struggling before the autism diagnosis? What about all the people who haven’t worked in non-profit for two decades like me, so know even less about where to turn? Don’t know why and how to be your own, well-informed and best advocate? What about people with even worse insurance in a state that does not mandate coverage for autism? What about people who didn’t get the leg up the First Steps afforded us?

What about the parents who believe it when their doctor says “wait and see, no need to rush to a diagnosis” so they miss out on the critical early years of intervention? What if tomorrow someone else is told their child has one of two options for their future – your basement or a group home – and they believe them?  How do we educate all the people who still think autism means low cognitive skills or retardation – yes, people still think that – and teach acceptance and understanding that not communicating the same does NOT mean mentally deficient? What about…? What if…? How…?

My son is brilliant and unique. He has a future and a purpose. He may never fit the common core check box  – Heck, already he is considered below benchmark on many levels, yet at 3 1/2 he can count to 100, count by 2’s and 10’s, do some math, knows the alphabet (upper and lower), can read many words (likely more than we know), and does puzzles and mazes better than his dad and I do. But if we don’t change the way this autism life works, we could fail him.

And for me, that is just not an option.

I don’t have all the answers – and that’s what keeps me up at night – but I know we need to have the conversation. I know we, as a society, must do better by our family, friends and community members on the spectrum. I believe things need to change for the better. I’m not entirely sure where to start, and I don’t know exactly where we’re going, but I’m determined to get there none the less.

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Responses

  1. It is trial by fire! And you hold your child out in front of you as you walk through it. I remember feeling much the way you describe. So confused with the many options, the incredible costs & not knowing which way to go to do the right thing for my boy.
    I tried things that weren’t right for him and soon realised. I tried different therapists trying to find the right fit. The only advise I would give you is to trust your instinct as a mother, trust that you will know if it’s the right program, therapist or therapy. You won’t be able to do everything at once so focus on the areas that you think will most benefit your child & don’t stop till you find what he needs. You will get there! Trust yourself!!

    • Thanks! I have learned pretty quickly to listen to my instincts, but sometimes I still doubt. A work in progress. At the end of the day, I know this… I love my son fiercely and will do all I can to ensure he knows it and can live his fullest life – His – not somebody else’s ideas for him.
      Again, thank you! It’s nice to get reassurance from someone who understands!


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