This is Hard

Caution- this blog post is rather raw.  My emotions are raw, and I am being honest in a way I rarely am.  I ask for forgiveness in advance.

 

Being a special needs mom is HARD, and lonely.  There are good days and bad days, like everything in life.  But for some reason, I carry around this bone-deep exhaustion and wariness.  I worry whenever a teacher or a mom wants to talk to me because my son so often does things that aren’t socially acceptable.  

 

I cringe when my son hands me a note from the school because it’s usually because he is in trouble.  And I am always trying to shield him when he is nearing meltdown mode because I want him to keep his friends.  And I don’t know how his ‘freak out’ would affect the other kids.

 

I love the good days (and they are SO good!), but dread the bad days.  I wish I could be like so many other moms and enjoy my child more.  But he doesn’t usually want to talk to me.  He wants to watch the same video over and over again while making sounds that drive me to distraction.  

 

He loves movement, so that makes it hard to cuddle and watch a show together because he would rather have the sensation of falling off the bed or the couch—over and over—instead of staying in one place.  And finally, I can’t take it anymore and have to go hide—within earshot, because he has a tendency to break things.

 

I really hope that there are special angels assigned to special needs kids to keep them safe and help them grow up. Because my son seems to be so accident-prone and never looks when he goes into the street.  And every time I take a “sanity break,” I feel guilty because I feel like I’m running away from my own kid.  And who does that?

 

Don’t get me wrong, my son is well fed and has everything he needs.  And if he wants me I’m just in the next room.  He has therapy 2-3 days a week and goes to school like everyone else.  But when the other moms gather to talk and laugh about their kids and their silly behavior, I feel like I live in a different world.  I’m lonely because I can’t tell the other moms how things really are at my house because they could treat my child as different or broken, and I won’t allow that.

 

I’m exhausted because I am always on guard.  My son is big and strong for a 7-year-old and has little impulse control.  The other day, in one day, he broke a living room chair by landing on it so hard that the springs popped out the bottom.  He broke a laptop by grabbing the screen in two hands and wringing it like you would a wet rag.  He emptied every toy container in the entire house and just left all the toys in piles—because he takes things out but never puts them back.

 

Then he poured water all over the carpet in the basement and didn’t tell anyone.  I found it before it started to mold, but just barely. Sometimes we go for weeks without a serious breaking spree.  But when it happens it’s like he is going from thing to thing, breaking anything he touches.  He is currently enjoying a two-week vacation from the computer and Xbox thanks to all the recent destruction.

 

I’m tired because he can’t be trusted alone for long.  He goes to bed between 8 and 9 like most 7-year-old kids.  And I stay up to get things done, so I want to sleep past 6 am.  However, if he is up he is moving.  And that means I better be up too to keep an eye on things.  

 

Today I overslept by 30 minutes, and in that time he got himself toast and opened the cabinet and got his medicine “all by himself.”  And proudly told me he took the right doses even though he wanted to take more.  I am glad he is so candid with me, but inside I’m shaking with fear that I’ll oversleep again. And maybe this time he won’t be so responsible.

 

I’m torn between being proud of him for his independence and wanting to freak out because he got into the medicine cabinet without supervision. And he vacillates between being incredibly independent like today and needing everything done for him like he is a toddler again.  It’s all depending on his mood and level of functioning for that day.  I often don’t know what to expect.

 

My husband can’t handle the stress, so he hides in his work.  He travels every week, so it’s easy for him to continue his disconnectedness when he gets home.  He is in his office from dawn to dusk.  He will emerge for dinner, and then it’s back to the grind.  And when he deals with outbursts, he has little patience because he’s not used to them.

 

So it actually causes me more stress to get hubby onto the same page than to just deal with it myself.  We should communicate more, I know that.  But when he is on the road he only calls once a day, at best.  And how can I dump on him during the one contact we have as a family?  It’s just not fair to do that.  So I let him think things are fine, and we are fine, and let him focus on his work.

 

You may be reading this thinking “Man, she is a mess”.  But I am lucky that my son is on the high functioning side of things. I know women (on my online support group) who are much worse off.  So if you have a friend who has a special needs child, know that she is working hard to keep things together for the family.  And sometimes she may avoid everyone because she just doesn’t have the strength to keep up appearances that day.

 

You don’t need to be her counselor, you don’t need to take the trials away from her.  And you don’t need to step into her world. But saying hello, giving her a hug, or just texting her for no reason, you let her know she is not alone or forgotten. And those little gestures go a long way.  Please know how much you are appreciated.

 

Also, please know that if I keep things to myself, it’s nothing personal.  I have to protect my child. This is his one chance to grow up, and I have to make it the best experience I can.  

 

I have to help him become the best man he can be.  But dear friend, know that you are loved and that your friendship matters even though I am often distracted, and may not have a lot of time to spend with you.  And don’t worry.  I’ll shake this off, and I’ll be back to my old self before we see each other again.