A Diagnosis and An Uncertain Future for My Son

When you’re pregnant you spend a lot of time thinking about your baby. What will he be like? Who will he look like? Is he going to have my lack of direction and clumsiness and love for reading? Or will he be able to navigate anywhere any time like his dad and be much more social and outgoing?  Then you have this brand new baby you are getting to know. And slowly those questions are answered. But not always. My son received a diagnosis that still leaves me with questions and worries me. It worries me because there’s an uncertain future for my son.

All the unanswered questions

When you have a child with a diagnosis, medical, or neurological, you don’t get those questions answered; instead, you just get more questions. Today, my kids and I were watching ‘America’s Got Talent’ and a twenty-two-year-old blind autistic man sang and played the piano. There was no denying his talent or his disabilities. Hearing his mom speak about him, I, of course, got a little choked up but then he started to play and I cried. When he got the elusive golden buzzer, I was crying even harder. Then, my nine-year-old asked me a question that made me start sobbing. “Do you think Tiny Tot will be like that when he grows up?”

What does an uncertain future for my son mean? I have no idea…

Right now, Tiny Tot is four and just learning to talk. I hope that by summer’s end he will be potty trained at least a little bit. He is moderately autistic with a global developmental delay as well as a language delay. I can read that from our report from All Children’s but I can’t tell you what that means. I can’t stand here and say that means he will ever live independently. He may never speak fully and some days I really wonder when he will be potty trained. I am so sick of diapers.

What I do know

His diagnosis doesn’t define him. I know that he will be ‘okay’ because he is loved and supported. There is a grieving period when your child gets a diagnosis and we have had ours for almost two years now and sometimes I still grieve. I look at his sweet face and want nothing more than to make everything perfect for him. Of course, as his mother, I don’t want him to hear ugly words hurled at him. I want him to always feel accepted and loved the way I want that for my other children. But with them, it isn’t such a worry. I know they will live independently, have careers and families if they chose.

Some days, really most days, are fine. We are still learning about Tiny Tot and what he likes and what he doesn’t like. He seems to not like me yelling at his brother because it makes him scream. For a nonverbal kid, he is very loud! And then there are days like this, where an innocent question can bring back all the grief you thought you had dealt with. So today, I will cry a few extra tears as I look at his sweet face, I will give a few extra hugs and get a few extra kisses and pray for some answers that only time can answer. Until then, I’ll deal with an uncertain future for my son.