Tuesday, May 24, 2011

Throw me a bone, Red!

I always knew my oldest kid was going to be the death of me. I may not be dead - yet - but there are days when I think I'm very very close.

I was a single mom when I had Red. 22, in college, working full time. Completely on my own. It was scary, but I was able to find success in the role fairly quickly. But, from the very beginning, I knew he was going to be head-strong and a real challenge. 11.5 years (as of today) into his life, and he hasn't once proven anything different.

Red was very alert very quickly as a newborn. He always seemed to be trying to figure out exactly what was going on, and trying to interact with me. He tolerated affection, but only from me and my parents, he didn't want to snuggle with anyone else. He didn't mind if others held him or stayed with him, just don't try and get too close. He loved rolling over, crawling, babbling. He took awhile to walk - 17 months - but by 18 months, he was speaking in full sentences and having short conversations. By 2, we noticed some strange nuances about him, but we were never sure what to do with him. He was remembering whole chunks of music, but couldn't drink out of a straw. Red would play with Lego's for hours at a time, but couldn't throw a ball straight in front of him. It was at his 2-year appointment that his pediatrician warned me that I might have to be on the lookout for autism. I don't want to say that I didn't believe him, or that I didn't trust him. I just didn't know enough to be worried. Or maybe it was because he was doubting it, I didn't think it was a *real* warning, just the normal precautions that pediatricians give new moms.

Over the years, we would see more of his unique personality take shape and hold strong. His first true obsession was cars. In the 10 minutes it would take to drive to the grocery store, I would be nutsoid because he had named every single car between our driveway and the entrance to the store. He would compare them, discuss them, tell me what he does or does not like about each of them. He's now moved on to Star Wars, Star Trek, dinosaurs, and about a half dozen other things. His new pediatrician looked at me blankly and said, "So Red's a little savant, it will be ok." But she couldn't easily explain away him still wetting the bed - all the time - at the age of 5.

We tried Red in sports - soccer and flag football. He needs a shirt, "Does not play well with others." He just doesn't seem to grasp team sports. He's be a great coach, standing on the sidelines and barking orders, just don't ask him to chase the ball or line up or anything else because it is not going to happen. My dreams of having a star quarterback were gone, but have no fear, engineering or medicine is just as profitable and not nearly as deadly. He started having other social difficulties as well. He could interact with children one-on-one, or maybe even in small groups of 3 or 4, but beyond that and we were asking for trouble. He shuts down, and feels ganged up on. The end of his first grade year in school was a living hell for him, and finally ended up in him getting suspended. A bully had chased him under his desk, taunting him and yelling at him, and out of desperation, he screamed "I'm going to kill you!!" at the child. Using the word "kill" automatically gets you suspended. We decided to homeschool after that, keeping his social interactions to Cub Scouts and church functions - both things we could help him acclimate himself in without him getting too overwhelmed.

Red and I have had to grow together a lot. It has taken me a long time to really get used to motherhood and it took me having three other children to understand just how unique he is, and appreciate his mind-blowing qualities, as much as the drawbacks want to make me uncork a huge bottle of wine. I've learned that I am just not trained to equip him with all of the specific tools he is going to need to be successful in life. And now that I've said that, I feel the need to define a few terms:

- Yes, I am looking for a label. I think he needs a label so that we know exactly what constraints we're working with. I know lots of parents that don't need labels, and they are awesome, it works for them. But I need labels. I like labels. They're pretty and make everything all organized and happy. And yes, I have my own label for liking labels, its called borderline obsessive personality. So what? ;)

- I am only equipped to love this child. My heart is my only weapon. But my love for him is not going to be able to help him forever. Eventually, he's going to have to learn how to communicate with other people besides Mom. I can't give him what he needs for that, by definition, we'd be working against ourselves.

- I do not measure success by the number of degrees hanging on a wall, or the amount of dollars in a bank account. Success for Red will be happiness, love, a family with LOTS of kids (he loves loves loves kids), and being able to balance all of those things without daily meltdowns. That being said, I am not going to be upset if Red buys me a cute little beach house for me to retire to and have lots of front porch for the grandkids to clamber all over.

Red turns exactly 11 and a half today. He wanted to make sure I knew that. The last few months have been a roller coaster ride of trying to find him the exact help he needs. I didn't realize how difficult it was to get help for Autism Spectrum Disorder children. Naysayers gripe about how everyone has autism these days and its so easy to diagnose. Pffft. I'd love for any one of them to deal with one - just ONE - phone call that I have to endure just to get an appointment, or find the right doctor. It feels like I've been fighting forever, but I've really only just started. We met with a psychiatrist a couple of weeks ago, but. But but but. She confirmed that Red is certainly on the autism spectrum, but didn't want to begin treating him until after he had a few sessions with one of the counselors that works for her. The counselors don't accept our insurance. So, we start over with a new clinic next week.

In the meantime, the one concern we had been trying to battle was the bed wetting. He's never *not* wet the bed. For the most part, it doesn't really bother him. If he wants to go on a sleepover, he will take a pill (something like an anti-diuretic) that will suppress urine during the night. It is more of a frustration for me than it is for him. The laundry ... the smell - no matter how much I clean, and spray, and deodorize. We did a sleep study, thinking his breathing was affected, but he has perfect air flow. However, he does have a lot of leg movement during the night, and his doctor thinks its due to an iron deficiency, so bring on the iron tablets! We went to a nephrologist today, and it was a positive meeting. I told him I wasn't expecting him to work miracles, as we had long believed Red's system was working fine. He ordered a few tests, but also shared that his own son was a bed-wetter into his teens. Wait and see.

I've been overwhelmed with Red recently. He doesn't always relate well, and the constant explaining of emotions and sarcasm are really starting to wear thin on my patience. He really is a good kid ... he just loses sight of where the lines of social acceptance begin and end. And there are days when I just want to hide in the corner instead of reminding him yet again to chew with his mouth closed, or use manners, or don't hit your baby sister in the head because it hurts her feelings and teaches your baby brother that its ok to hit.

But then we have a day like today. It was just the two of us for several hours, and I was reminded just how funny he is when he's just having a normal conversation. A glimmer or what "normal" is.

Meh, who needs normal. Normal isn't always going to be among the fluffy bunnies.

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