I’ve spent the last eighteen years participating in an educational scavenger hunt and I’ve only just now recognized that was what I was dealing with. By age three it was obvious that Link was a special needs kid. It was also obvious that he was friendly, happy, loving, and smart. With the first diagnosis of language delay, I began seeking for things that would help him. I made up games, bought games, and worked with Link regularly. All along the way we had teachers, psychologists, and administrators who were very helpful to us. They gave me pieces I needed and helped us find our way forward. Yet we still spent a lot of time stumbling around because for all the help we did get, there was other help that we didn’t get because we didn’t know the right keywords to unlock those options.
A year ago depression loomed large in Link. He was desperately lonely and overwhelmed with trying to manage a full load at public high school. It seemed like we were constantly readjusting his schedule, dropping classes, switching to different ones. We were trying to find a balance, a way that he could do homework before he left the school grounds so that home time could be free of school stress. When I finally was able to identify depression as the problem, I called for a meeting with his school counsellor. It was like the word “depression” was a key that opened up a cupboard in her brain. “We could put him in home health.” She said. Then she described to me a mode of schooling which was something I’d been trying to describe for at least two years. It wasn’t that she didn’t want to help me before, but until I said “depression” she didn’t make the connection I needed.
I know a lot of parents shy away from seeking diagnosis for their special needs kids. I’ve done it myself. There are so many fears attached to diagnosis and the worry that the child will be labelled or pigeonholed. That has not been my experience. Instead I’ve found that a diagnosis is a passcode that opens up options. It is a lever which pries open pathways. I thought that because everyone was so willing to help, that I was getting all the help I needed. But that became less and less true the further along we got in Link’s education. At the high school level, staff is compartmentalized and specialized. There are lots of options, but it falls to the parents to seek out the options and ask for them. Parents have to be advocates. This requires lots of work, and it is exhausting.
I really recognized the scavenger hunt when Link was diagnosed as having autism one week before his eighteenth birthday. The diagnosing doctor handed me a folder with the phone number of a parent advocate and information sheets on three different transitional programs which might help Link. At that moment I thought how naming depression had led me to scheduling an appointment with a psychiatrist. The psychiatrist had given me information about autism advocacy groups and had suggested that getting a definitive diagnosis regarding autism was probably worth the time and expense. He also referred me to NAMI, who runs education and support for mental illness. I went to a support group for the families of those with mental health issues and they suggested that I sign Link up for Voc Rehab and the WIA youth program. So we did that. Multiple places encouraged me to finally plunk down money with a diagnostician and say “Is he autistic? I’ve seen autistic things since he was little, but I’ve also seen distinctly non-autistic things. I’m tired of not being sure.” The answer was that yes, he definitely is, and the diagnostician was frustrated that it hadn’t been identified when Link had been in kindergarten.
This is how it goes. One piece of information leads to another. There is no central source that knows all the options. Or if there is, I somehow always manage to arrive there last instead of first. By the time I was in touch with the parent advocate, I’d already heard of all the options she mentioned. We’ve still got more hunting to do. At this moment we’re waiting on funding from Voc Rehab. I’m waiting for a call back from the school district about their transitional program. I’m also waiting for a call from an adult educational specialist who can explain the GED process to us, because maybe that is the way to go. We’ve accepted the fact that Link will not be graduating with his class, even though his school counsellor would really like for that to happen. Sorting it all is a huge burden in time and emotional energy. It always has been. I constantly feel like I could be doing more and simultaneously I worry that I’m over helping.
Last night I went to a Relief Society dinner. This is the women’s organization of my church. I spent quite a lot of time visiting with a woman in my neighborhood who also has an autistic son. We’ve known each other for years, but me speaking about Link’s recent diagnosis opened up a huge well of shared experiences that we spent an hour talking through. She listened to me and was frustrated on my behalf that I spent so long without access to autism-specific resources that would have made the journey easier. As part of the decorations for the dinner there were anonymous notes on the wall where people wrote about the kind things that others have done for them. One of the notes said that I’d pushed to get her daughter into early intervention. I feel like I should know who wrote that, but I don’t. It could have been one of a hundred different conversations that I’ve had with people about special needs resources.
Last week I got a message on facebook from a friend who had read my post on Finding the Right Therapist. She asked me questions about therapy and children. I gave her what answers I had, but mostly those answers were in the form of additional questions she should ask and some direction for whom she should be asking. Thus I become a stopping point on someone else’s scavenger hunt to figure out how to help a child who is struggling.
I must admit that I spent some time this morning looking back at my past struggle and grieving that no one thought to give me answers that would have helped. I went ahead and let myself feel that grief. I know that I don’t want to spend a lot of time and emotional energy looking back with regret, but I have to feel it before it can pass and I am able move on from it. Moving forward is what is necessary because the scavenger hunt continues. I suspect it will always continue for Link in one way or another as he tries to navigate a neurotypical world while being who he is. Though hopefully we can reach a point where the hunt is not a major feature of daily life, and the hunt is primarily Link’s quest, not mine. He needs to be empowered to find his own solutions.
Some days I can believe that we’ll reach an independent adulthood for him. Other days I can’t. This too is part of the hunt. I’m not just seeking resources, help, and answers. I’m seeking emotional balance, peace, acceptance, and maybe even joy. This year is better than last year. We’ll continue onward to see what comes next.
