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.
I’m still emotionally reeling from an encounter I had with someone who does not have kids about the cleanliness of my house. The messages I got was that she was wondering about my mental state because I couldn’t keep up with the housekeeping, and that she did not feel that the way I kept my house was acceptable and I needed to do better. Both of these were a slap in the face to me, especially because I do work hard on the house, but most people never see it. I have a sensory seeking autistic 6 year old boy who I nickname Wreck It and I have a 3 year old, so my house needs some sprucing up. I also own my own business and I supplement the schooling my son gets through his therapy with a little bit of homeschooling. In other words, I am working four jobs per week, and since Buddy’s therapy is so expensive, even with insurance, we are spinning our wheels just to be able to afford that (it’s basically another mortgage), forget hiring housekeeping! I think I’m allowed to let the housekeeping slide.
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?
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.
One of the more challenging aspects of homeschooling has been hammering out the schedule. Buddy is in therapy for twenty hours a week, four days a week. This is good because they do work on academic skills, but it still makes finding the time challenging. In the morning I’m so focused on getting everyone dressed and out of the door on time that it doesn’t happen. And after five hours of therapy, Buddy is tired and doesn’t want to do more table work. And then in the evening I see clients for my counseling practice.
Usually when I ask Buddy to pick up his toys at the end of the day, he ignores me. Since he was 2 I would attempt various ploys to get him to clean up. Some things would work once, and then never again. This was frustrating for numerous reasons, but especially because as a sensory seeking autistic child, he can make a large mess in a very short amount of time (pretty much he dumps his toys bins everywhere). He will also move furniture, such as the dog kennel around (he’s big and strong).
Tomorrow we are looking forward to celebrating Buddy’s first birthday party that he has invited friends from his school to (and I’m nervous that no one will show up). Buddy has bonded with the other little boys in his class and hopefully he’ll have a fun filled day with them tomorrow.