"Look At Me"

"Look At Me"
monotype and screenprint

Wednesday, January 29, 2014

A Glimpse

"From the outside looking in you can never understand it.

From the inside looking out you can never explain it." --Unknown

I am a stay-at-home-mom who does art on the side. My life, for the most part, revolves around my children. From the moment I wake up in the morning until I close my eyes at night, I am thinking of them. Yes, I think of other things too...but they come first.

Whether I want to or not, I think about autism. It is always there--every minute of every day. It's part of Derek's neurology. It's who he is. And I love who he is. But, let's face it--it's not something that affects our lives once a month, like a menstrual period. Autism impacts everything. If I want to go to the store or on a trip or even out to dinner, I have to think about how it is going to effect Derek and if he can handle it or not. In a lot of cases, the answer is no. For instance, I've been wanting to visit my grandmother in Rhode Island for a while now. She's never met Derek. But could he handle a plane ride? Or a 7 day car trip? I'd like to be optimistic and say yes. But, realistically--the trip would probably be a nightmare for him. 

I'm going to be completely honest with you here. When Derek was first diagnosed, I did a ton of research online. A TON. I read every article I could get my hands on. I read about possible causes. I read about possible cures and treatments. I read about vaccines and chelation and DAN doctors and mercury poisoning and Jenny McCarthy and GFCF diets. I was kind of obsessed. I tried a lot of things. I wanted to do everything I could for my child. The only thing that has really helped him is time, patience, love, therapy, and my attitude change--that he is amazing the way he is and doesn't need to be cured. Now, my goal is NOT to make him pass as "typical", but to help him navigate this world the best he can.

With a child like Derek, it's hard not to be obsessed with autism. Especially when there are daily news reports of autistic kids being bullied and abused, escaping from schools, and drowning. It's a reality most parents don't give much thought. I have nightmares about it.

I'll give you a glimpse at what life is like with a developmentally delayed, autistic child. (Please, don't think I'm complaining here. I'm not. But, I'm also not going to sugarcoat it. I don't do "fakebook." This is my daily life.) This very morning, I woke Derek up. I helped him go to the bathroom. He's 6-years-old. He still wears a diaper at night. (Yes, a diaper--not a pull-up. Pull-ups don't fit him well and they tend to leak. I like sleeping. I'm not about to deal with wet sheets in the middle of the night). He went #2, so I helped him wipe. He needs help with that still, too.  

*Oh, and by the way, Derek sleeps in my bed. I've mentioned before that he has Cyclic Vomiting Syndrome, right? About once a month, he wakes up in the middle of the night vomiting uncontrollably. He continues vomiting every 10 minutes or so for 3-5 hours. He sleeps in my bed because A) I'm terrified he'll asphyxiate on his own vomit and B) so that I can help him get to the toilet and minimize the mess. When he vomits, he's seriously like the kid on the Exorcist movie. Somehow, he sprays everything. It's scary as Hell.

Derek during one of his CVS episodes.  

Back to today...I helped Derek change his clothes. He is not capable of dressing himself entirely (yet). He needs help with buttons and zippers and getting his feet in the right holes of his pants--especially if he is tired, which he was this morning. I also helped him get his socks and shoes on.

The entire time I was helping him, Derek was scripting a scene from Despicable Me--I'm pretty sure it was the scene where Gru steals the moon, because he was talking about the shrink ray. Just FYI.

Then came breakfast. Oh, breakfast. Food is a challenge. Derek hates to eat. He has Sensory Processing Disorder (most people with autism have SPD) and can only handle certain textures of foods. He likes dry, crunchy foods and that is about it. It doesn't leave us very many options. Today, I got him to eat a handful of pretzels for breakfast. That was it. Some days, he eats a cookie or a granola bar. I consider it a success if I get him to eat anything at all.

Then I helped him get his coat on and I drove both of my kids to school.

Today was one of the rough days. Derek didn't want to go to school. He couldn't tell me why. (Communication is still sketchy. He's talking more and more, but answering questions is hard.) I had to carry him into the building. He fought tears the entire time. But, at least he wasn't sobbing. Some days, he is.

Most kids go into the auditorium until class starts. (I drop Tyler off there.) Derek can't handle the noise and the crowd, so I take him directly to his classroom. I leave him with his aide, and say a little prayer that he has a good day.

I have a few hours to nap, do housework, work on art, and do errands before the kids come home. I feel like a chicken running around with my head cut off. Some days the kids have dentist or doctors appointments. Lately, one or both kids have had to stay home sick. Since Derek has Cyclic Vomiting Syndrome, he is home sick a LOT. I've cleaned up more vomit in my lifetime than I ever thought possible.

After school, Derek has ABA (Applied Behavior Analysis) therapy. It's every single week day. His therapists help him with the things he is struggling with in school, like writing the ABC's and counting past 10. They also help him with life skills, like eating with silverware, brushing his hair, etc.

This is when I cook supper and help Tyler with his homework.

I'll spare you the details of our supper, bath, and bed time routine. I'll just say that Derek needs help with all of it, and if I get him to eat anything other than dry cereal it is a bloody miracle.

I fall into bed every night exhausted. I run through my day in my head.

I wonder if I'm doing everything I can--for both of my kids. 

I feel like I should be doing more.

I could always do more.

There's a food therapy program at Munroe Meyer.

I could try to get Project Lifesaver available in our county. (Project Lifesaver provides tracking devices for people with autism and Alzheimer's, in case they get lost.)

What about sports? Gymnastics might be good. Or swim lessons at the Y?

Maybe I am obsessed.  

The only way for me NOT to be obsessed is if I walked out on my children and my life.

Obviously that's not going to happen.

Maybe, in some cases, a little obsession is a good thing.

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