This post was inspired by a message I got from a friend. I won’t give you her name, but here is her message to me:
“Ok need to sigh to someone who “gets” it… think I am reaching the point of “Oh just forget it” with all the Pca’s, Bsc’s, Central, Access, Respite, Evaluations, Child Guidance, meetings, Assessments, Ot & Pt appts. for the boys. I’m kinda at the point to throw up my hands and let them play in the rain and forget about trying. Although then I remember it will help them in the long run but I’m just soo frustrated knowing like yesterday we spent a total of four hours inside at these intake evals!!! Thanks for listening to me , sigh…”
First of all, let me say, that after many conversations with my co-blogger, we have said that we want this site to remain a site for positivity. Yeah, being a special needs parent is hard at times. Really hard. Cry, scream, throw-shit-at-the-wall-hard. Not literal shit, just like a pen or a book or something. Maybe your phone. But this is absolutely, positively, not going to be one of those “wah wah, my life is so tough and no one gets it so let me give you 5000 examples of my daily struggles” type of sites. There are plenty of blogs for that, this isn’t one of them.
So, my message to my friend, and to everyone else out there, is some advice I got from our geneticist, several years ago. Give yourself permission to live a normal life once in a while. Don’t skip vacations because you don’t want to miss appointments. Cancel appointments and go to the park on a sunny day or stay in bed on a rainy day. Curl up on the couch and watch a movie. Eat ice cream for dinner, or for breakfast. Not every day, but once in a while. Be carefree, say no to commitments or you’ll go crazy. Some parents are just soooo afraid of missing one therapy session…it could be that one session where they have a huge breakthrough in skills, right? And we can’t possibly take the chance on missing it.
Yes, yes, you can. Lots of studies are showing that patients actually excel and surge with skills when they’ve had rest periods.
Our kids do have abnormally scheduled lives. Sometimes I can’t believe all the stuff my 4-year-old has to do in a week. But we all need some down time too, including our kids. You need it to regroup and recharge. Step off the hamster wheel. Take a deep breath, relax, and then get back on.
If your child is the type that changing up the schedule will just cause more frustration for you both, then ask for help. “I just need an afternoon off, time to spend with my other child, can you please drive “child” to his appointments today?” Friends and family have offered to help, you know they have. Take them up on it.
Give yourself permission to be normal, if only once in a while.