Coping with Autism

Several days ago, I wrote about sleep and autism. Many children who are autistic have significant problems with establishing consistent sleep patterns. I then made the fatal mistake of mentioning that Peter (who has had the worst sleep habits of all three kids) has settled into a routine that allows my husband and me to get a full night's sleep most of the time. Well, that's no longer true. You may notice that the time stamp on this post is midnight. I am awake because Peter apparently feels that he doesn't need sleep tonight or at least not anytime soon. And since he has discovered that he can escape both gate and crib, there is little to keep him confined in his room. We have found that, by confining him in his room, we can get him to calm down long enough to go to sleep. Not now. My husband did have a very good idea for fixing this problem but we still need to iron out some logistical issues. At the moment we are thinking of installing something like an old-fashioned bar...

My husband is off today which is unusual. Normally he works Saturday mornings and because he gets up really early (2:30 a.m.), he's exhausted by the time he gets home. This means he takes a nap (he falls asleep whether he wants to or not) and I have all three kids by myself for almost the full day with little relief in sight. (When he does wake from his nap, my husband is still tired and grumpy.) Today, I get a little break. I won't have to wrestle Peter during naptime by myself. I won't have to harp at Gabrielle to clean up one of her many notorious messes. (Why is it dads can say something once in that deeper voice and kids jump to obey?) And Nathan will have another person with which to play jungle gym. Now, if I could convince my husband to let me take a nap. . .

Peter, again, refused to cooperate last night at bedtime and ended up finally going to sleep at midnight. And he didn't want to nap today so, being the Houdini that he is, he managed to escape my seemingly impenetrable jerry-rigged blockade while I was writing downstairs. He then decided that our upstairs bathroom needed to be turned into a swimming pool or small lake. I know this because, as I wrote, I suddenly heard additional water-dripping sounds apart from those made by our fishtank. My kitchen ceiling was leaking. I ran upstairs to discover, to my horror, that my bathroom was (and still is) greatly flooded. So I sit here, exhausted, out of clean and dirty dry towels, trying to decide if I should call my husband now or later to tell him. Later, definitely later.

Last night we had to put Peter back in the crib (I was so looking for to taking it down!). As I mentioned in a previous post, Peter has gotten tall enough to hike his leg over the gate and hoist himself up and over. And kids with autism are horrible sleepers and nappers. Take the average child's reluctance to sleep or nap, cube it and you're close to what it's like. Next step will be a sit down discussion with my husband to brainstorm our options. We'll end up deciding on a solution after we look at catalogs, visit the baby section of a store for safety ideas and take into consideration Peter's personality. In the meantime, we're adapting to the situation as much as possible.

It's amazing what we take for granted as "normal." Getting the boys haircuts is so difficult. They are too old for a stroller so I can't strap one of them in while getting the other one's hair cut. And often I have to sit with each boy to keep him calm while this is going on. So I have to go with someone else-- I can't get their haircuts done by myself but it seems like my husband is always at work and he's the best one to go with me. Yesterday, I finally broke down and bought a hair clipper kit. Up to this point I thought if I tried to cut the boys' hair I would tear their hair up and it would look awful. However, Nathan was beginning to look like a girl with his hair so long and fluffy (my husband and I both have thick hair so each of the kids has really thick hair). So I clipped the boys' hair late yesterday and, even if I do say so myself, they both look pretty good. Granted they could have held still longer so I could trim the temples a little...

Nathan's fever broke over the weekend (his fever lasted about 24 hours or so) but he's been in a grumpy/clingy mood ever since. I'm fearful he has an ear infection (which is more common in kids with autism) and I'm praying he doesn't. He's supposed to see an ENT on Thursday as a follow-up to a previous appointment. However, when he has an ear infection he's extremely grumpy and extremely clingy and it's impossible to get anything done. To add to this, over the weekend Peter figured out how to climb over his gate (without a chair or any other height enabling assistance). He has gotten tall enough that he can swing his leg over, hoist himself up and drop to the other side and, although I do have concerns about his ability to sing anything lower than a high tenor in the future, he manages to do this without getting hurt. Right now he is lying on our couch supposedly attempting sleep but it doesn't sound like we will have a successful naptime. And, again...

I was shocked when we first started private therapy for the boys last year. An hour of speech and an hour of occupational therapy for both-- both therapists working together with each boy for 1 hour a week-- runs around $4000 a month. We are very fortunate, my husband works in Washington D.C. and his insurance through work is purchased in Maryland. Even though we live in Virginia, state law in Maryland applies to our insurance coverage. Maryland is one of only eight states that require autism services to be covered. While our insurance applies discounts to the services, they still pay somewhere around $2500 a month. I can't imagine what a family goes through if they can't afford this. We found that having the therapy early on, as soon as they were diagnosed, helped both boys tremendously. Neither was enrolled in the special-ed preschool services at the time and it was a couple of months before either qualified to enter school. Now, both boys continue to receive private therapy ...