When you are the parent of a special needs child there are certain things you don’t say aloud for fear of giving others the wrong impression. So we hold them in. And we feel alone. And we feel like bad parents for even having these feelings. What typical parents see is us “just doing it” and being strong. Because that’s what we show the world. But there’s an ugly side to it as well. One we don’t share. Sadly, by not sharing, we isolate ourselves and wind up feeling worse.
When I chose to write He’s Not Broken, I chose to open up about everything. Having a special needs child is hard. Understand that we love our child unconditionally (obviously), but they are not the child we planned for. I read all the What to Expect books, but none of them ever talked about what to expect when your child is atypical.
I can’t even begin to tell you how many times I retreated to my closet to cry – to yell – to cope. I had no other parent friend who understood what I was going through. I was alone.
I decided that it was up to me to be that honest voice. Because someone has to. Someone has to talk about the fact that, despite our shame, we feel a certain level of disappointment. My son is now 23 and is doing well, but I still feel ashamed that when he was diagnosed I thought to myself, “This isn’t what I asked for!”
I think what we have to do is allow ourselves to grieve. Yes grieve. There are seven stages of grief.
- Denial – for me it was “he’s just a kid being a kid. Nothing is wrong with him. Kids are strange.”
- Anger – why me? why him? It’s not fair.
- Bargaining – I’ll do anything if you just let this not something he has to carry/I have to carry.
- Despair – Depression. Guilt. The future you expected has been taken from you.
- Acceptance – He’s Not Broken. Never has been.
- Hope – the reason I got up every day – hoping he (we)would find ways to cope, to live out our normal.
I moved through each of these stages over the course of 10 years or so – the time it took me to write He’s Not Broken. I allowed myself time to heal what was broken inside of me. My son has never been broken. Ever. By allowing myself to feel the “bad” feelings, think the “bad” thoughts I was able to see our situation differently. We weren’t a typical family, but Jake’s diagnoses brought us closer as a family as we tried to help Jake find his stride. It’s never been easy, but I think we’ve all learned to appreciate every single victory, no matter how small.
I reflect on these things now as I prepare to watch my Jake move out and start a life separate from me. As sad as I am, and I am, I couldn’t be happier for this boy who has overcome so much.
If you have a special needs child, know that there are no wrong or bad feelings. You have to acknowledge what you feel, give it space, and then release it. It’s the only way to survive.
Need a friend who understands? Reach out to me, please.