My son, Joseph, is an undiagnosed Autist. That is, I am 100% sure he falls somewhere on the Autism Spectrum, I am just not sure where, because I have never taken him to a doctor. From my extensive reading, I believe he has some form of High Functioning Autism. According to what I read in the DSM-IV, he had nine out of the 12 possible symptoms where you only had to have four or six(it’s been awhile). And he had significant speech delays, which indicates HFA and not Asperger’s Syndrome. At least, those were the terms that were going around three years ago, when I was doing my research.
Also, the signs are all there. He has gone from one focused interest to another, since he was born. For the first three years of his life he only had one kind of toy (balls) and two words: “ball” and “bat.” Right now, he has one toy, an iPad 2. He carries it around with him at home, even to the bathroom, and he sleeps with it. His thinking is so concrete that he can’t really understand a calendar (as far as I can tell), but he can memorize seemingly endless lists of facts. He has whole Magic card decks memorized, but he has no idea how long it is till his birthday; nor does he care. He has watched the Nicholas Cage movie, Ghost Rider, two to four times a night for the last six weeks while he sleeps intermittently at one to eight hour stretches. He can not tell us why he needs it on to sleep, nor that he does, but he can not seem to sleep at night without it. When he sleeps during the day, he doesn’t need it. When he gets nervous, he spits in a rag as he can not bear to swallow his own saliva. If he can not manage to get a rag, he spits wherever he can find. He doesn’t know what missing people is, and he has never once expressed the desire to have a friend.
There are so many things that are surprising and cool and terrible about this journey of parenting a special-needs child. (It’s so weird to say that. I almost never say “special needs child.” Not that I am ashamed that he is, or that I feel like it’s too horrible to say, it’s just not something that we have said in that way, historically, in our family.) But what really amazes me is not how hard it is. I would have expected that, if I had thought about it before I found myself doing it, rather than vice versa. The amazing things are not the surprising ways that he is easier than his neurotypical (though still very weird) sisters. That is startling, but the first thing that amazes me is how this journey of parenting Joseph and dealing with his special brand of perception has changed me as a person, my view on the world and my faith in God.
**Special Note: This post is going to deal with how we have dealt with Joseph’s issues, the next one will deal with actually parenting him. The two can be separated, to some extent, at least for discussion’s sake. I would like to say, before I proceed, that my description of what we have done is just that: description, not prescription. I would never attempt, or think to attempt, to tell someone else how to parent their child or what choices they should make in treatment of any disorder. I have no objection to treatment or therapy, morally or ethically. We have done what we believe to be right for our son, but we do not judge anyone else’s decisions in similar matters. No judgment here, just self-disclosure and honest exploration.**
The first thing is our choice to not pursue services and intervention on his behalf. It wasn’t actually a conscious decision. We were of the parenting ilk that didn’t take kids to the doctors unless they were actually sick and he never was.
When he was a baby, I didn’t realize he was “delayed.” He talked late, but I knew a lot of kids who did, and he seemed to get his point across. He seemed to be happy and well-fed and growing. Also, what he lacked in verbal skills, he made up for in physical milestones: walking at a year, throwing a ball the same month and catching it a mere six months later. He could kick a rolling soccer ball at 16 months.(Later, I would come to find out that that is a classic Autism sign.*shrug*) And who would think anything was amiss with a boy who likes balls? Some people said the “A word,” but he didn’t tantrum- quite the opposite, actually- or flap, so I didn’t think that was it. Additionally, I had two older kids and my marriage was falling apart, so I may not have been as observant as I would be later, when things stabilized a bit.
Fast forward a few years. I leave my husband and after a mildly messy divorce, we are all out the other side and Joseph has to go to school for the first time. He is almost 7, that’s first grade. He hated school with more emotion than he had ever shown about anything. It was an unmitigated disaster. He never wanted to go in the morning and when asked how it was: “it was terrible.” Some days were better, but he was more stressed out and more agitated, overall, that year than I have ever seen him. He regressed when it came to being able to handle his emotions, especially frustration and anger.
When the end of the year came, they wanted to retain him in first grade. But how could that be? He could read game guides written at Junior High level and add two digit numbers in his head. How can they think he doesn’t know what a cup is or what goes in it?
Turns out what he didn’t know was how to converse in the standard fashion, or how to answer and ask questions. When they asked him questions, he just said, “I don’t know.” I don’t think he knew what that meant either. So he came back to homeschooling and we are still working on the questions. He knows more, but he still doesn’t hold a standard conversation. It’s the classic informative lecture mode, for the most part. He learns lots of things from YouTube and we have discussions, in ways that he can understand: statements. Next year: educational apps.
Every day, I second guess all those choices, conscious and otherwise. I wonder if I should take him to the doctor. I wonder if I should wish I had taken him to the doctor ten years ago. Would he be better off if we had gotten early intervention? We are doing pretty well, so how can I think that? But if we are doing so well, now, could he have been even better? And yes, sometimes I wonder: could he appear “normal”? Could he go to Sunday School and answer questions and order off a menu – not the exact same thing he always orders? Could we not have to go to the same places all the time, so that he can order the same thing he always gets? Could he name what he wants for lunch without hearing it first? Would I even want any of that? Would I wish him to be other than he is, if I could? I don’t know.
Maybe he would be worse off. Maybe he would appear better, but not understand any more than he does now. Maybe forcing him to go to therapy would have squashed all the personality he does have. Maybe he would have completely shut down (that’s what he tends to do when he gets overwhelmed: shut down, even to the point of sleeping). I don’t know.
Here’s what I do know. I spent the first 34 ½ years of my life running the other direction from God. The one thing that has helped me reconcile the effects of my former life with the joy of my present life in Christ, is the absolute faith that God was there even when I didn’t want him to be. When I didn’t know God, he knew me, he helped me, he directed me right to where I am today. He allowed what sin needed to be allowed and he kept me from what harm I needed to be kept from. I believe that without reservation.
I also believe that if he did that for me, he must have been and still continues to do that for Joseph. Is it possible that Joseph might be better off with therapy? Yes. It’s also possible he might be much worse off. I think I will know one day, when we all know fully, as we are fully known (1 Corinthians 13:12). But, for now, I just have to have faith that we are all where we should be. If I have messed it up, I know God can fix it. If he means to have my son, I know he will and my weaknesses will not stand in his way. It is enough, it has to be.
What God has really taught me on this path that has lead to my son receiving no services for his condition, is that I have to let Joseph be Joseph and trust God to be God. If I expect Joseph to be like other people, or other kids- even kids much younger than him- I will be disappointed. Or frustrated. Or angry. If I focus on us living up to meaningless ideas of what children should know and act like and what parents should do, then I will be worried and fretful. If I let Joseph be Joseph, and I trust God to lead us all where we need to go, then I can rest and be at peace. Will Joseph be as successful as he could be on this path? I don’t know. Will he act and talk like everyone else? Most certainly not. But here, he gets relationship on his own terms. I do know that relationships are our best window to God’s heart. God lives in relationship and all of our relationships are meant to give us a better understanding of Him. We bear the image best when we are in relationships. That has nothing to do with how you carry on a conversation, or if you can ask where the bathroom is.
But, in light of eternity, I think it may be the only thing that matters.
Trust in the Lord with all your heart,
and do not lean on your own understanding.
In all your ways acknowledge him,
and he will make straight your paths.
Be not wise in your own eyes;
fear the Lord, and turn away from evil.