I took a five minute shower today, with the shower door open and my oldest running back and forth in the locked bathroom. As I stood towards the back of the shower, I took what was probably the millionth glance at my son to make sure he wasn’t trying to make a run for it, I thought about all the other times I have taken showers like this. It’s rare I get one to myself. Rare that I get a shower in which I can adequately address my backside with Dove and water (it’s hard to do so when you have one foot in the shower, one foot out). Rare that I can even use the restroom by myself without my son in the room with me. I am with my son 24/7 and he cannot be left alone, for any period of time, for whatever reason. He requires constant supervision and it’s tiring.
Shortly after my son was diagnosed, I used to hope that one day the doctors would tell me that it was a mistake and that he didn’t really have Autism. Once I accepted his diagnosis, I hoped he would be one of those who would one day speak. I’m now okay with that no longer happening. Now I just hope that he is one of those nonverbal kiddos with Autism that I can take somewhere without having to constantly hold his hand or worry about him running off and breaking something…or getting run over. I want to be able to let him roam around the house like my youngest in the spectrum, but I cannot do that.
My son is a lot to handle, and a lot of work. I’m overwhelmed. Around the clock care takes a lot out of you. My son has PICA, so he eats everything. He’s nonverbal, so it’s hard to understand what it is he wants or needs and as a result his negative behaviors increase. He’s extremely hyperactive and impulsive, he runs and jumps til he sweats and bolts into the streets. He knocks over things when left alone and is incredibly strong. We have door and window locks and alarms. I already mentioned I can’t go to the restroom or take a shower alone. Everywhere I go, he must go to. I can’t do much of anything else when he is with me, including give more attention to my youngest, who desperately needs the interaction of his parents.
They tell you not to compare, but I do…I admit it, sometimes I do. I walk into the grocery stores and I see the special needs high school students learning he ropes of the grocery business while on field trips and I instantly get sad because I cannot do see a day where Aidan can do that. Not right now. I do not yet see the day in which I’m not called to go on class field trips because Aidan will be too much of a handful. I don’t yet see the day where he gets to walk around the ranch with his other special needs classmates petting animals and riding trains without running away or throwing hay around or trying to eat dead frogs. Where I’m not constantly having to hold him to keep him from running into the street. We didn’t enjoy one bit of field trips because I’m spending too much time holding onto him than we are enjoying it.
You see, my son isn’t like the other kids. He isn’t like the his brother. He isn’t like the other kids with Autism. I don’t need the “if you’ve met one kid with Autism” line, I know this and believe this to be true. However, my Aidan tends to be the only one as severe as he is in the room, and we’ve been in a lot of rooms. The only one I’ve personally met who requires around the clock supervision. The only one I’ve met who cannot even begin therapy for behavior modification because his behaviors are too severe for behavioral modification. Ironic.
I reach out for help but none of it seems adequate because the help comes from those who aren’t living as we do. This isn’t to say I don’t appreciate the help, I really do, and I will continue to ask for help…it’s just hard to get the right help when no one has really gone through this exact situation.
I feel alone in a community that is suppose to understand. How did that happen?
I am off to take another one of those five minute half showers…and cry.