This will be my last post for the week, despite the fact that it is only Tuesday. Tomorrow is the 4th of July and that means my little monster will be home for several days, school free. This roughly translates into mommy being “leisure free.”
Speaking of my little monster, I “talked” to a friend of mine via text message last night (Connor was up waaaaaay too late so there would be no actual conversation with adults). She is struggling with her own special needs child. And some of the statements she was making reminded me so much of….well, me.
Raising a special needs child is a daunting task. It is exhausting, challenging, and humbling. It’s a reminder of how little control we have over our lives, when all we want as humans and adults is to exert a little control over our corner of the universe. Raising a special needs child is an exercise in patience. It is a test of your faith, your confidence, your own love for your child. You feel like a failure. You feel like you are failing your child, failing yourself, failing your friends and family.
But that’s what I want to stop. It was a hard lesson for me to learn, but I finally did. I cannot worry about the opinions of my family and friends. I cannot worry about what others might think of me or my child. I cannot worry about what anyone else thinks except for people who are invested in doing what is best for Connor. And anyone who judges him or me is not focused on what is best.
People who look at a special needs child and hold them to the same standard they would an average child just don’t understand. If they’re important to you, you can take them time to try to educate them. But it’s important to remember that no one is going to ever completely get it until they’ve walked a mile (or a week) in your shoes.
Because of this, parenting a special needs child can be incredibly lonely. It is a truly isolating experience. Only you know what is best for your child, what might set him off or might light him up. You have the knowledge that he is unlike other children, even though he may outwardly look average. Your parenting experience is tremendously different from most other people you’re going to know. There are support groups, chat rooms, organizations meant to support you but even then you miss the company of your friends who are parents because you expected to share this experience together. You had hopes and dreams of joining the same tee-ball teams, the same PTA meetings, and bbqs on the weekends. But your child needs different things, different help and instruction, different types of social interaction. And you have to let go of all those expectations. You have to say goodbye to your dreams and make new ones.
For a long time I didn’t want to take Connor to public places for fear he would have a meltdown. I was nervous about the stares and comments I would get from strangers as Connor hit me or screamed or lay on the pavement in the middle of Disneyland (he’s done all of these things). I was initially embarrassed that Connor would behave like this in public! My child was acting like a maniac!! I wanted to pin a sign to him that said “He’s autistic!”, as if that would make everything ok. I wanted the people staring at me to know I was doing the best I could!
And then I stopped. I looked around. Other children are having meltdowns in public places all the time! It’s part of childhood. They get over-tired, over-excited, over-stimulated just like my little autistic boy. Average kids might have a longer fuse, but they’ll still explode!
With that knowledge and a lot of self-acceptance, I stopped caring. Connor’s behavior is what it is. It doesn’t matter to me anymore what strangers think. In all likelihood I’ll never see them again! Why should I care if they think I’m a bad parent or my son is an out of control menace?!? And if my friends or family dared to say something like that to me, things would not go well for them. And they would most likely lose the pleasure of our company.
At the end of the day these are the only thing that matter:
I know I’m not a bad parent.
I know Connor is not a bad child.
I know some people are never going to accept either of us for who we are and there’s nothing I can do about it.
I know there are millions of parents out there facing the same struggles, or worse, that I do every day.
I know that millions of special needs children grow and thrive and love all over the world.
I know Connor is happy, and really, that’s all that matters to me.