Keeping Up the Fight With Our ‘Special’ Tweens with Autism

Keeping Up the Fight With Our ‘Special’ Tweens with Autism

Dealing with my son’s autism can be an emotional roller coaster. Some days – mostly weekends – tend to be good until something upsets him, which can set off a chain reaction of just about everyone else in the house (minus the cats) getting upset, too. Other days – mostly school days — can be very frustrating. Michael is a bright kid, but hates homework and will come up with just about any excuse to not do it or he’ll rush through it at school so there’s nothing left to do at home, until the corrections arrive. Despite the ups and downs and frustrations, autism rarely leaves me teary eyed.the struggle is real for the tweens and their families who live with autism

I can count one hand the time it’s made me cry. The first was when the school district finally agreed he qualified for special services, but that they would not be the one to provide them – he attended a private school in District A but we lived in District B; they insisted District B write the IEP – even though they knew for months that where we lived. I was so drained from that meeting that I came home and broke down in tears. After months of fighting District A – and sending him briefly to a school in District B, which left me many mornings in tears because the aide had to pry him off my arm because he would not go into the school building, – District A relented and agreed to provide services to him at his original school (I’m a good letter writer and I think that one to the Department of Public Instruction really paid off; District A’s superintendent even called to apologize and wrote a conciliatory letter.)

I thought we were all good until two weeks ago when I received an unexpected email from our county caseworker. During Michael’s annual review – which consisted of asking me literally four questions – they determined Michael was no longer disabled and would no longer be able to receive in-home therapy services and outpatient therapy services through its waiver program.  Opening that email, I was stunned and immediately broke into tears. These were services Michael needed – not only here at home to help him with life skills, which we were going to tackle this summer since he’ll be 13 and it’s probably a good time for him to learn how to better take care of himself – but more importantly, it cut off his access to his therapist, who is helping him deal with severe anxiety. The email came at 3 and I have to leave to get the kids at 3:10. I was a mess as I drove to school, but pulled it together before they got into the car (I’m happy too that I had sunglasses to cover my red-rimmed eyes).

I’ve had people ask why we need to use a waiver – it’s basically Medicaid – when we have health insurance through my husband’s job. The truth is that when it comes to autism related services, it stinks. Since he works for a company that is self-insured, it does not need to offer coverage for autism related services, which includes in-home therapy as well as autism-related therapy services. That means those $150 a session visits will have to be paid out-of-pocket and the same goes for the $300 or more for each in-home session (he gets one a week) so you can see how quickly the costs add up.

This latest experience has made me realize I can never let my guard down and that as he gets older, it is getting more challenging for him to get assistance even as his differences become more pronounced. No one really notices when a 7- or 8-year-old is hanging on his mother in public, but trust me, they do notice when the child is 12 and just a few inches shorter than the person he’s holding on to. We’ve gotten more stares from people in the past six months than in the previous 10 years. I’ve also learned what a resource other parents of children with autism are. When I posted what happened in a Facebook group I belong to, several offers of help and suggestions emerged. Many of them have been through similar experiences or know of someone who has been through the same thing.

I spent a Sunday afternoon researching the state rules about disability requirements and wrote a letter to the case worker explaining how Michael met each of the rules. Three days later, she responded that the county had its mind and Michael once again could receive the waiver. While I was able to fight for and win this time, I think about other parents who may not know that appeals are possible or even where to look for help.

This latest bump in the road may just be the beginning, but I plan to stick with it and continue to fight for Michael to get the care he needs every step of the way. The number of hoops that parents of special needs children need to jump through to get their children help is absurd. Michael and all our children are definitely worth fighting for.

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MaryBeth Matzek

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