Right now, I am at my limit with Republican efforts to repeal the ACA. Frankly, if you have no health complications and your children also have no health complications, that’s not an accomplishment. That is luck. And that luck can change in an instant, and then perhaps you can understand how hateful this feels, how this feel like a constant attack from the government on my family’s ability to provide for our children and our children’s ability to live.
My autistic son, Buddy, will be aging out of his therapeutic day program for autistic children in November, and transition to a program that is just a few hours in the afternoon. When this happens we will homeschool him, for reasons I have gone over the reasons for doing this in previous blog entries, and the simple explanation is we live in Texas and they treat children with special needs horribly and our experience with sending him to public school was horrible.
I have a friend with a 3 year old, and every time I see that boy I can tell it’s just a matter of time before he gets an autism diagnosis. What baffles me is that despite pleadings from the 3 year old’s speech therapist and pediatrician to get him evaluated for autism, my friend insists that he is not autistic and that there is no need to have this done. Given that when Buddy was three I was jumping through hoops to get him screened just in case and I still feel bad and as though I didn’t do enough to get him in intensive services at an early age (Buddy was always right on that border where the diagnostician was worried about overdiagnosing him, until he turned 4 and the communication gap made it undeniable). My reasoning was it would be better to over treat him when he was younger than to delay and miss that golden time when the brain is most plastic and he would get the most benefit from therapy. Yet, it also really serves to show the difference between my worldview as an atheist and hers as an Evangelical Christian.
My grandmother is going into hospice this week. I was expecting this, and feel prepared. I know she was ready to die three years ago when she first got sick, and I mostly hope that her suffering ends soon. I then turned to the task of trying to explain this to my autistic 6 year old and my 3 year old. I sat down once and told them that G.G.Ma was very sick and likely wouldn’t be with us for much longer, and it went over their heads. So as I was driving I thought that I should get a children’s book about death. I love reading to my children, and Buddy learns best when I read to him.
My whole philosophy with Buddy has been based on acceptance. If he grows up and goes to college and lives on his own, great, and if he always need to live with us, great. We’ll take it as it comes. Yet with autism, unlike other disabilities, there seems to be this race among parents to make sure their child progresses as much as possible and becomes as neurotypical as possible.
Considering I have a background in working with children with special needs, there’s an acceptance among parents of children with Down Syndrome or ADHD for instance that you don’t see with autism, and I think it’s because an autistic child can either grow up to be the next Albert Einstein or could never progress much and require constant care. I think this will resolve in time with genetic testing and when we can get a good idea of how much progress the child is capable of making early in life. But for now, when people get the diagnosis, we don’t know how they will grow up.
Meanwhile, the parents of Child B see the parents of Child A gloating about their miracle/perfect formula for “curing” autism and feel the blame when Child B does not progress much and blast autism as the worst thing that can happen, while autistic adults look at how Child B’s parents are making autism to be this big boogeyman and recoil, especially since, when parents of autistic children murder them, it’s given a free pass and seen as a justified reason to kill your child.
I think the fact that some children make gains at the age of five, others at 7, others at 13 while still other children never make those amazing gains leads to this belief at the beginning of the diagnosis that if you find the right combo of snake oil and therapy you can “cure” your child, and you don’t get that with Down Syndrome, where the limits are well known from the outset. So with autism, parents never get to an acceptance stage, which can cause resentment if the child does not progress as the parent believes they should, which gets taken out on the child, who bears the brunt of those feelings.
With autism it has to start with accepting that even if your child gets to a point where they can seem neurotypical they will still be autistic. It means trying to see the world from your child’s eyes. It means not spending all of your time trying to change your child. And for goodness sake’s, if your child wants to stim let them stim. I don’t know why some parents get so hung up on that.
Accepting your child does not mean accepting bad behavior. I want to be clear on that. Here’s the thing, while Buddy had bad behavior when he was younger, now at 6, he rarely acts out. I painstaking taught him how to control manage his strong emotions, and now he regulates himself so well that his case manager said that his self control is amazing for a typically developing child, much less an autistic one.
It meant being there when he was tantruming, saying it’s okay to be mad, it’s not okay to throw things or bite, find a different way to say you are mad, and modeling anger management techniques such as blowing bubbles with him. At times I wondered if I was wasting my breath and if he understood me, but he did. Not he asks to go to his room or to go to the potty at school until he calms down. Autistic children can learn to manage their emotions.
Accepting a person is that distinction between behavior and person. It is, “it is okay to feel this way” or “it is okay to be different” and “this behavior you are doing needs to change.” It’s okay to ask for the latter, though I do my best to limit it to when he is going to hurt himself or others. But when you focus on curing autism, you reject your child. And think of a time when you felt rejected. How did you react?
One of the multiple problematic things happening in our government is Trump appointing Robert F. Kennedy Jr, an anti-vaxxer who believes there is a conspiracy to hide the effects of thimerosal on children, to chair a panel on vaccine safety and to revive the “debate” on vaccine safety. As the parent of an autistic child, this angers and worries me.
It’s finally happened. After 6 years and two months of using diapers Buddy used the potty at home. And let’s just say, it was a long, frustrating road, made more difficult by the fact that despite all of my reading and researching, I couldn’t find anyone detailing the same problems I was seeing who could tell me how to approach it. Even the experts were either unhelpfully condescending or baffled.