Casey’s going through a rough spell where he’s really volatile. He breaks down and freaks out over the smallest things. Then the freakouts last for hours and hours. It’s all I can do to keep him from attacking his brothers or me. Sometimes, it’s all I can do to not hide in my bed with a pillow over my head and hope that it all sorts itself out without me.
It’s times like these where my body aches from the inside. Where the rigors of just daily life are too much to take. Where I can’t fight the sadness and sometimes the anger of how different things are for me. How hard. Autism is hard. It’s always been hard. Down syndrome is hard, but it’s a rewarding hard. Abby’s easy and everyone loves her and treats her like she’s the greatest thing ever. With Casey, the rewards are a lot fewer and farther between. As are the people. Autism is scary. I don’t blame people for keeping their distance in the worry that something might set him off or that they might do something wrong. But there are so many days I just wish he was treated like the rockstar that Abby is.
These are the days that I resent being called a “hero” or being told that I must be someone great to have had God send me these special kids. Sounds like a crazy thing to resent, huh? I know VERY WELL that people who say this mean the absolute best. They are trying to make me feel like I am someone with special powers to be able to handle what life has handed me.
I am not.
I’m a regular mom in an irregular situation. I don’t like being called any of those things because it puts me on an “impossible pedestal” as another mom called it. It jams me into a mold that I just can’t fit into. Because there are days where it’s too much. Where ANY mom would want to walk away. It makes me normal.
Sometimes I feel like people say that with the feeling that because I’m “special” I don’t need help. I’m going to let you in on a big secret of mine and of MANY other parents of special needs kids: We need help. We need so much help. We very rarely get what we need. Or even close.
I need help. The respite screeners came over the other day. They asked me what I needed as far as care for Abby. All I could think of was the care I needed for me. I hadn’t showered in two days. My nerves were frayed. Lance was away on business, my house was a mess and Casey and Peyton were both laying at my feet completely pissed off that I had a meeting when they wanted to get on the computer and have some pink milk. I choked out the word “respite” and at the same time held back tears. Until my throat got all sorts of sore. I’m not sure why that happens.
I’m not a supermom. I don’t have any plans on becoming one. Please don’t label me that way because I absolutely cannot live up to that expectation.
ha ha. Lower your expectations of me, please.
I was thirteen when my dad passed away from cancer. I remember so many people telling us that God knew we could handle this trial. I remember thinking, “What do I have to do to prove to God that I absolutely can’t handle such trials so I never have to go through something like this again?” People said that we were special. That God must have really loved us to allow us to go through such a thing. I’ve heard the same sort of things from people around me about the situation I’m in now.
If it’s true, I sort of wish God didn’t love me so much.
I need to go now. Abby is getting tired and hopefully she’ll sleep (here’s proof that I’m not a supermom- last night she woke up screaming again and was on her way to a full blown asthma attack and I seriously thought, “Dammit baby, you and your not breathing is RUINING MY SLEEP!” There you have it.). Most of you haven’t met me in person. Most of you don’t live close enough to me to come and give me a break. I know you would, too. But here’s what you can do instead. You HAVE to know someone with a kid with special needs. I don’t care if you don’t know them well. Just seek out that mom and tell her when you’re coming over to watch her kids so she can take a nap, get some lunch alone, whatever. Give her a break.
So please, for me, find the mom you’re thinking about right now and help her. Please. She’ll never forget it.