Last April, Boyo was diagnosed with Autism so I thought I would post today on, Autism Awareness day, about how much it has affected our lives. (Spoiler alert: not very much)
Now, please keep in mind that the Autism spectrum is pretty broad. And it’s really more like a color wheel than a sliding scale. Also, the early intervention services available differ from state to state. So our experiences may be very different from others.
Last but not least, I’m typing this on my phone. We just recently moved, and while we have internet, I have not found the charger for my laptop yet. So there may be typos and formatting issues.
As I’ve said before, neither my husband nor I were shocked by the Boyo’s Autism diagnosis. We had known from the get go that he was considered high risk due to family history. And his early arrival also put him at risk for developmental delays. So the odds that he would need a little help catching up or might end up on the spectrum were pretty high.
We had been seeing the signs that something was a little off since just before he was a year old. He had stopped babbling. Eye contact and shared attention were practically non existent, and he didn’t really seem to care about other kids. Also he didn’t play with toys appropriately (though I have gripes with this, because who’s to say what’s appropriate play for a toy? It’s up to the kid and their imagination) However, we held off on getting him evaluated for ASD because it would not have affected the therapy he was already getting through the local Regional Center. While ABA therapy is primarily associated with Autism, it’s also used to help infants and toddlers get caught up in speech or other areas when they are too young to sit through traditional speech therapy. So the Boyo was already getting the therapy he needed for the delays and behavioral issues we were seeing.
It wasn’t until the Boyo started to get closer to turning three that getting a diagnosis was suddenly important. In California, children with certain delays or disorders can qualify for extended services – usually respite care and copayment assistance. And transitioning while you are currently receiving services is supposed to be easier (ha!) than requesting it later.
Since getting an evaluation done through insurance would have taken too long (the go to company our insurance liked to refer children to had a year long wait) we decided to go to the therapy company that was giving Boyo his ABA therapy. Since he was familiar with them and their offices, we thought the results would be more accurate than if we had gone someplace new where he might be too distracted. Sure enough, the evaluation went pretty smoothly and we had the results two hours later and a full report a couple of weeks after that.
I did cry after receiving the diagnosis. But it wasn’t because I was upset about Boyo being on the spectrum, or mourning any future dreams I had for his life. Like I mentioned before, we always had a feeling he might be on the spectrum, and with everything that we had gone through with him we had learned to take things one day at a time. Hell from the moment he was conceived it was touch and go at times, so my prayers and dreams were always for him to be healthy. And, aside from his rough start, he was healthy. No, I was crying because I felt that we had been failed again by the very professionals who were supposed to help us. I had mentioned to them so many times that I thought he was on the spectrum, that he might need speech therapy, but every time I brought it up, it was ignored.
Seriously, if I had a penny for every time that happened in the Boyo’s life – we would be rich.
And I was crying because I was relieved that we finally had a team that finally believed us. Sure, the diagnosis didn’t make a difference in the services Boyo was receiving, but it was nice to know that our opinions were being heard and respected.
Seriously, the ABA team we had in California was amazing. I know ABA is controversial, and there are some horrible ABA companies out there, but the team we had was always respectful of the Boyo. Their goals were never to change him as a person, or stop his stimming, but to work with him to teach him more common sense things that all kids should know regardless of if they are neurotypical or not. Things like safety, learning to manage meltdowns and self soothe, etc. And it was all done through playing, and by following Boyo’s lead. They had become our family and friends.
We went home and told family about the results of the test – and we were promptly met with a certain amount of disbelief. Everyone has a very specific idea of what Autism is, and it seems to either range from the extreme to examples like Sheldon Cooper on the Big Bang Theory. Since the Boyo didn’t fit into either of those ideas, people didn’t believe that he was on the spectrum. In trying to explain what Boyo’s particular brand of Autism is, we were met with cries of ‘but that’s just what kids do!’ So that was has been a little rough.
Aside from that, after the diagnosis, life went on as normal. The Boyo kept getting his therapy, and then in the fall he started preschool. We had a bit of a fight to get him qualified for extended services and setting up an IEP was a bit of a pain – but those are subjects for other posts which I plan to share later this month. I just wanted to share this today, on Autism Awareness day, to explain that a diagnosis isn’t the end of the world some make it out to be. And even though things might be rough right now, there’s no way to know what the future will hold. After all, even raising a neurotypical child is a marathon, not a sprint.