The Worst Day Ever...Again

As I huddled in bed last night, the tears came again soaking my pillow. I thought I had run all out, but that's the thing with tears -- there are always more. As I put my son to bed last night, he dragged his feet muttering, "This was the worst day ever and tomorrow will probably be just bad." Always the reassuring, positive mother, I told him it was not the worst day ever and today would be better.

But in retrospect, it was pretty darn bad. He woke up "off" -- more anxious than usual and without explanation. Before school, we cuddled and I reassured him it would be a good day. Less than three hours later, he was on the phone from school, asking to come home. I asked if I could come to see him and then we would decide. Less than 15 minutes later, I was at school sitting in the sick room, holding him. (I am glad no one could see since he is nearly my size now; I'm sure if anyone had seen they would have wondered, but then again -- what do I care? He's my child and hugging him tight helps him feel better.) We rocked back and forth and I reassured him it was going to be ok. The tears came. We talked about his morning looking for what may have made him feel nervous and then we talked about the rest of the day, including that two of his favorite activities -- lunch and art class were coming up. After about 10 minutes, he said he felt better and would go back to class.

I resumed my activities. I am so blessed I work from home and can drop everything to run to school when needed. A few hours later, I was in the parking lot and the minute he came out of school, I knew something was wrong...again. Apparently, he didn't understand when an assignment was due and got a late slip. He was so upset with himself and started hitting himself on the head. Just thinking about that moment now brings tears to my eyes. Seeing your child inflict injury on himself is the worst thing ever. I quickly tried to calm him, feeling fortunate he had his stuffed bear Cookie in the car with him. I told him to hug him tight and everything would be ok (again). When we got home, he asked quietly to play the iPad and again apologized for being so "bad." I reassured him that he was not bad. While he de-stressed watching Pokemon videos, I quickly emailed his resource teacher to tell her we needed some sort of solution regarding his assignment notebook since my son clearly has no idea when homework is due and when there are tests. It's part of his IEP that this is taken care of, but like many things it is easier for schools to put in writing than to actually do. I also called his therapist to see if we could get in since self-harm is some thing he hasn't done before and it was very frightening. Of course, there were no openings and we were added to a waiting list.

If dealing with school was not enough yesterday, Michael was also supposed to do his first test as a red black belt on the road to getting his black belt in taekwondo. I told him to forget about the day and just focus on the task ahead. He tried his best, but again he was clearly off. He messed up one of his forms and as he tried for the third and final time to break his boards, the tears again came. As much as I wanted to help, there was nothing I could do. I sucked them up, told him he tried his best and he said he just wanted to go home and watch Pokemon.

As I tucked him into bed last night after a shower and watching an episode of Pokemon, my little guy looked exhausted. It was only 8 p.m., but I am sure he was asleep in less than 10 minutes. Sometimes, I don't know what's worse -- the autism that socially isolates him and causes him  to drift off into "Michael World" as he calls it where he finds it difficult to follow in class or the anxiety, which rears its head for unknown reasons. Later as I climbed into bed myself, the tears came again -- for him, for me and for the rest of the family who has to witness his daily struggle

Not Ready to Give Up the Fight

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.

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 was the case. 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 me to apologize and wrote a conciliatory letter.)

I thought we were all good until this past week when I received an unexpected email from our county. 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 and I was a mess as I drove to school, but pulled it together before they got into the car (happy too that I had sunglasses to cover my red-rimmed eyes). As I did with the school district, I don’t plan to go away quietly. I’ve asked for a more detailed explanation and plan to file an appeal. Michael was no different Wednesday than he was Thursday; how could he no longer be considered disabled? Is it a chance in how the state defines autism? Does it have to do with the latest changes in how the medical profession defines autism? I’m not sure, but believe me I will find out.

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). I am planning to contact his employer again to find out if anything has changed since the last time we sought coverage and am also going to see if they’ll cover his outpatient therapy sessions if they’re related to anxiety.

This latest experience has made me realize I can never let my guard down and that as he gets older, it is getting more difficult 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.

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