As a special needs parent, my hope is to be a voice for the kids and parents who still struggle with what to say to family and friends. I used to be one of them, too, before having a son withautism!
I have come to realize that in most instances, people do not mean to say hurtful things; they just truly do not know. Parents with kids that “do it typically” may not understand because they don’t have to. But for parents with atypical kids like me, we need and should be able to share special moments and still feel accepted. My son may never take an advanced class, he may never be on an All-Star travel team, BUT that does not make his efforts count less. Special-needs kids work hard, maybe harder in many ways.
There is NO “typical” day for special-needs families; every day is full of the unexpected! To help others know what it’s like to raise special-needs kids, I wrote a list of things I wish my friends knew about me as a parent. Here are my honest thoughts.
- I was not “chosen” to raise a special needs child. If your child was diagnosed with a special need, would you trade him for another child? I don’t think so. Saying to me, “I don’t know how you do this” or “better you than me” is NOT helpful. I do what I do every day, because I have to and, guess what, I don’t know how to just everything all the time…and there are days I DO NOT want to!
- I worry all the time. I worry that I’m not doing enough. I worry that what I am doing is wrong. I worry that I caused the autism. When he fell as a baby, was this the result? (Oh my, I never wrote this anywhere before, but I always secretly wonder.) Will my sweet boy be able to live on his own? When we die, who will be here to take care of him? (This hurts to type; I cannot begin to tap into the reality of it all.) Will he will ever drive a car, or get married? The fears are tremendous, and so deep that…when you talk to me about your child getting into a top school, I tend to zone out
- I always need to be “ON.” Parenting can be so draining for all of us. Mix in a special needs child and think overfull blender with no cover at full speed! I don’t sleep well
Read the rest of my article in Parents Magazine right here.