When my son was born I thought I had a healthy baby boy. And I thought that for two years. We started noticing he wasn’t learning to talk like our friends’ kids were. His Sunday school teacher said something to us about it and we got him into speech therapy. We had a lot of family members telling us he was fine, that some kids learn when they’re three or four and not to worry. His speech therapist asked us if we wanted him referred for an autism assessment. She wasn’t suggesting he had it, she just said we could check if we wanted to. I thought it was a good idea so I could finally stop worrying about him.
He had his assessment when he was three and a half. There were two psychologists and a pediatrician. We thought he was doing okay. He was obviously behind where they thought he should be. I thought that was because I was a young mom and I didn’t know what I was doing. They didn’t give us the results that day.
We weren’t supposed to have him with us when we went back. We took him to our friend’s house and we went to our meeting. I was expecting to hear them say he didn’t have autism. We sat at this big table in a boardroom with all these strangers and they told us our son fit the criteria for Autism Spectrum Disorder. I think I went numb. My husband started crying. They kept talking. They said he was too young to tell us how severe it was. He might never learn more than a few words. He might never learn to use the bathroom independently. He may never move out. We were given a pile of papers to take home. They said he had government money, but it was up to us to figure out how to spend it. We left. We got in the car and I started crying. I remember the world literally looked darker than it used to. Josiah wanted to get coffee before we went back to the babysitter. I didn’t want to but I went. I sat in McDonald’s and stared at my coffee cup with tears rolling down my face. Some people were looking at me and I didn’t care. I don’t think I spoke.
I barely remember picking him up from my friend’s. I didn’t want to see her when I had news like that. We went home and I just cried. We called our family members. I made a few calls myself, and I let Josiah make some of the calls I should have made because I just couldn’t. Some people cried when we told them. Some people didn’t understand why we were crying. Someone said, “You’re acting like he died. It’s just autism.” Except it felt like death. It felt like we’d lost our son. We’d thought we had a healthy little boy who was going to have a childhood and do kid stuff and grow up and move out and have his own life. All of that was gone and replaced by the cruel reality that the rest of our lives could be spent dealing with the worst parts of autism. I was told I would have to fight for him his whole life.
I couldn’t deal with it. I gave myself a week to cry, and sleep, and feel the loss of my son. Then I picked myself up and read through the papers and we figured out his funding and found therapists for him and started dealing.
I went with him to his speech therapy once a week, and dropped him off at his behavioral therapy five days a week. I stayed with him sometimes. They were wonderful and encouraging and they promised me it would get better. But it still hurt so much. For a long time when I looked at my son all I saw was autism. When he flapped his hands or shrieked or stared at the lights instead of people. We stopped taking him to public play areas, like at McDonald’s. It hurt too much to see him around other children. His behavior was so starkly different.
His therapists were right, of course. It’s gotten so much better. He’s communicating really well and he’s been taking care of himself independently and he’s even learning how to have friends. It’s far more than we were told to hope for at that first meeting. It’s still hard though. He has a full time EA at school and we have to have special meetings to talk about his progress. It’s still hard seeing him with other children his age and noticing how different they are. We never let him play outside unsupervised, and we really only trust my dad to babysit him. He’s just so unpredictable and it’s so hard trying to explain to people what to watch for. For example, a few weeks ago he had a welt on his head because he thought he could fly like Superman and just jumped off the playground before his EA could react. She’d been working with him every day for a couple months. As his mom, at this point, I know him so well I usually know what he’s going to do before he does it. That’s not something I could teach someone else.
I wrote this blog because this topic comes up a lot with people. I always thought I would write it down one day… It doesn’t feel finished. There are a million more things I could say. I guess this is all I needed to say today.