Top Ten Reasons Why I Hate Being a Special Needs Mother
Okay, I promised myself I would never blog about it because this was supposed to be "me" time, my little escape from the world. I had a really bad weekend, though, and I need some place to vent my frustrations. Keep in mind these aren't about my son but about his condition and the extra burden placed on me as a parent. So here goes:
10. Having to use large, brightly colored cut-outs around my toilet, sink, and shower so that my son can differentiate between them all since they are normally white porcelain against a white wall. Bye-bye to my pretty spotted Ikea shower curtain and contrasting striped floor mats. Now it's bright orange behind the toilet, bright blue behind the sink, bright yellow for the curtain. It looks like a circus tent.
9. Spending two hours trying to figure out what is causing my son's violent tantrums and screaming fits only to discover it's because I was descaling the teapot and forgot to put it in the exact location on the back right burner of the stove.
8. Trying to figure out how to make a palatable meal for the rest of the family that involves similar or exact textures so that everyone will be happy and I won't have to cook three or four meals. Sometimes this gets so tiring and/or frustrating I just make them all separate meals and skip dinner myself - replacing my meal with a hot shower.
7. Not being able to have an adorable bedroom for my preschooler with all the cute little toys I see in pictures of other kids rooms. My son has two king-size mattresses on his floor, which take up almost all the space in his room, so that he can crawl underneath them when he needs to. He does, however, have a rocking horse in one corner, but that serves more as a diving board so that he can throw himself onto his mattresses. He also flies into rages and tears his room apart, ripping curtains off the walls and etc. This makes him more angry because of the disorganization and I end up cleaning his room five to seven times a day. Of course I make him help me, I'm not irresponsible.
6. Being forced to depend on my older son for help with my special needs child. My oldest is super-responsible, helpful, charming, wonderful, never complains, and takes on so much more responsibility than a child his age should have to. In fact, his teacher at school complained that he tended to boss the other children around and try to be like an "assistant" to her. I told her off and explained that he has a special needs sibling and he takes on those responsibilities out of necessity, not because he's bossy. I hate his second grade teacher.
5. Feeling so isolated. I know intellectually that I'm not the only mother who deals with a special needs child. That doesn't help to make me feel any stronger on a day-by-day basis. Those other mothers and support groups seem so far away when my son is wailing because the lights are too bright or the rain is too loud. He asked me just this weekend to turn the rain off because it hurt him. What am I supposed to say to that?!
4. Getting stared at by obnoxious, nosy parents. Yes, my son likes to lick the brick wall at his brother's school. Yep, he likes to stand at the top of the playground equipment, strip naked, throw his clothes, and then skid his naked ass down the metal slide all while I'm hollering and chasing him trying to get him dressed. Mm-hmm, my son likes to hide in the bushes when there are too many people around, or go underneath the cafeteria tables, or roll around in the mud like a puppy. I'm not a bad parent, lady, my child has a disorder!!! Go find something else to do. Isn't there a Starbucks on the corner? Sheesh.
3. Feeling like a failure. Yesterday I played with my son all day. We did activities that his behavioral therapist suggests for sensory integration play. Unfortunately, I forgot to bring him back down after each game we played - meaning that I had to "reset" his senses with breathing exercises. Because I'm such a loser mom and forgot that, by the time bedtime rolled around he was absolutely wild-eyed and enraged. He couldn't process the information that he'd experienced and was kicking, biting screaming, scratching, and crying. Instead of feeling bad for him I got really angry. I put him in his room, went into my room, stuck my face in my pillows and screamed as loud as I could. Then I put him in a cold shower, swaddled him like he was a baby, rocked him for about 30 minutes, then tried his bedtime routine again. Worked the second time. But it was all my fault that it didn't work the first time. I just feel like I have to be perfect constantly because every mistake I make has drastic results. Don't even get me started on the time I tried to rearrange the furniture in his room...
2. Not being able to spend enough time on myself. I know all moms go through this regardless of whether they have a special needs child or not, but this is a certain extreme that I never had with my older son. I used to wear nice clothes, do my hair every morning, never left the house without make-up. And this was all when my oldest was a baby! Now I consider dressing up to be changing out of my pyjamas. I have very long hair and the best I can do with it is brush it, then pin it up really fast. That's if I can FIND my brush. This morning it was in the utensil drawer next to the oven along with one of my husband's diabetic socks, a batman car, and two paper clips. I completely clean my house, every room top to bottom, at least three times a day. I used to vacuum five times a day until the cleaner finally broke. Between all that there really isn't much time for anything else. I sure would like to feel beautiful again though...
And the number one reason I hate being a special needs mom is:
1. Trying to figure out if his behavior and outbursts are the result of normal preschooler outbursts or whether they come from his disorder. The main problem here is that I can't discipline for something he can't control. He's just as confused about his disorder as I am. Maybe even more so. But I can and I should discipline him for outbursts that have nothing to do with his disorder. Sometimes telling the difference between the two is like trying to figure out what the hell Picasso was painting. (Yes, my hidden shame is that I am incapable of appreciating art.)
If you got this far, thanks for reading. And if you're a special needs parent then you probably know where I'm coming from. I adore my son, I hate his disorder. It's just that simple. I think tomorrow I'll write the Top Ten Reasons Why I Love My Special Needs Kid.