In March of 2010, I realized that I needed to make some changes. I was as heavy as I had ever been, weighing in at 250 pounds, at 5'9.5". And my boy was just getting stronger every day. Ten years old, eighty pounds, but with the strength of someone much bigger and older, and a strong dose of impulsiveness.
Well, things just got more interesting. Two pimples appeared on his nose this morning. And this Saturday, he almost (accidentally) knocked me out.
More below the fold.
Note: I'm seeing some bolding in the draft, even though I have not bolded anything. If it appears so in the diary after it is published, I apologize.
I don't now recall the exact incident which caused me to decide to make a major life change. I just know that I came to the conclusion that if I was going to keep up with my boy, I needed to live a healthier lifestyle. Weighing in at 250, with a blood pressure reading which was much higher than ever, I was not going to be able to handle my boy much longer.
Along with than epiphany came another; I had nobody to rely on to take care of E---, were something to happen to me.
His mother is involved in his life. She comes over at least two times during the week, on Tuesdays and Thursdays, and stays for several hours. Saturdays are almost a given. But she can't handle him for more than a few hours alone. That means that, in the seven years since we separated, E--- has only spent the night at her house once. I don't judge her for that. Those of you who have autistic children, particularly low-functioning children, know how hard it can be. Mom is high-strung, and lives in a what-if/yes-but world. Her glass is not only half empty, it's cracked and leaking. I've been living by spiritual principles for a long time. I'm no saint, but generally I am calm and in the moment. My glass is not only half full, but God will refill it.
For a long time, I thought that perhaps my brother and sister could handle E--- if anything happened to me. I was disabused of that notion a couple of summers ago, when we vacationed together at Ocean City, New Jersey. We were on the boardwalk, and my son had a fairly typical meltdown. My brother walked away from us. Later that week, my sister, who has been supportive and helpful in the past, declined to babysit long enough for me to see a movie. I was disappointed, but again, not angry. After all, I am 52, and they are older, and have never had children. The one person in my family who might be able to handle my boy, my mom, whom E--- worships, is 80 years old, and lives across the country from us.
Anyway, last March, I decided to make a change. And I have. I now weigh about 165 pounds. I know, that sounds like a lot of weight pretty fast. But the fact is that I lost slowly, less than 2 pounds a week. It's only been the last 10 pounds which caused a need for adjustment, which I'm the process of making.
In the meantime, my boy, who had been on anti-seizure medication since he was 2, got his annual EEG this December. Our neurologist had told us the previous 2 years that his brain pattern was getting better, and that he would take E--- off of the medication if the latest EEG continued to be "normalized". My son's brain pattern will never be normal, as his autism manifests in certain patters which are off the mean. But now, at 11, it was possible that the seizure activity was a manifestation of juvenile diabetes, which often does go away around that age.
Thankfully, the EEG was normal, and we were able to wean E--- off of the medication over the next few months. My boy has been diagnosed with ADHD by his primary. Given that he was already on one medication, I was unwilling to consider putting him on a second medication. Now that he was off the anti-seizure medication, his neurologist recommended that, once weaned, he should be totally drug-free for three months.
At first, E--- seemed to respond well. His attentiveness increased, his verbalization started to take off, and he became more inclined to follow a toileting schedule, which would lead him to (finally) get out of pull-ups. On the other hand, I had noticed that the anti-seizure medication did seem to have a calming effect on him. Without the medicine, my boy started to act more hyper.
Lately, the crap has started to hit the fan. E---'s willfulness and tantrum behavior has escalated. And boy is he strong. A couple of weeks ago, he and I went up to the Penn campus. It was alumni day, and I figured that I might see a few old friends (I did). But before the parade of alumni, I stopped at the university book store, which is also a Barnes and Noble. We went upstairs to get some water for him, and some diet soda for me. As I stood in at the register, my boy grabbed some Sun Chips. I knew he was hungry, but said No, we're going to McDonalds soon, you don't need this now. His reaction reminded me of that European commercial that came out a couple of years ago:
I tried to hand the Sun Chips over the counter to the lady, to get them away from him. In his frantic attempt to get to the chips, he grabbed the counter and tried to pull himself up. Instead, he pulled the entire counter off and down. Six feet of counter, held in by nails. Now, I almost never get embarrassed by E---'s behavior. Granted, it can seem off-center to folks who don't know that he is autistic. If someone questions me or makes a comment, I have cards to hand out which explain what's going on. But this was a bit over the top. No comments, just stunned silence. I explained that my boy is autistic, and is stronger than he looks. We got out of the bookstore with a minimum of fuss.
When we can afford it, I rent a Zip-car, and we drive all over. Sometimes it will be to Longwood Gardens or Morris Arboretum. Other times we will take a circuit through the Pine Barrens, with the cranberry bogs and blueberry fields, stopping at Nixon's in Tabernacle for lunch. We run up to Princeton quite a bit. It's a lovely drive, with farms to visit, and a bakery downtown which makes amazing almond pastries. Or we may take a drive along the Delaware river from Yardley across the Washington Crossing bridge, thence up to Howell's living farm near Lambertville.
This Saturday, we drove out to Lancaster County; Amish country. Usually, we go to Strasburg and ride the train; my boy loves that. But this weekend, we decided to head for the Central Market in downtown Lancaster. There is a vendor who comes down to the farmers' market around Rittenhouse Square in Center City on Saturdays, who makes this amazing goat-milk fudge. The problem is that he runs out of vanilla fudge almost instantly, and that is our favorite flavor. So, we figured we'd go to the source, out in Lancaster.
So, off we go. We park in a garage across from the market, and stroll in. After a few fits and starts, we find the fudge counter. E---'s mom shushes us away, so she can talk to the lady at the counter. We wander outside, where a young lady is playing Irish fiddle music. It's a wonderful scene, parents with young children standing around, a beautiful sunny day. The lady is making out, as little girls and boys toddle up to drop a dollar in her case. Now my boy loves music. So it is no surprise to me when he starts rocking back and forth on the balls of his feet. He even takes a dollar and drops it in her case. But as time progresses, he starts to get excited; too excited. I walk him away for a minute. We go back to the fudge counter, but his mom is deep in conversation with the fudge lady. So back outside we go.
At this point, he decides he want me to put him on my shoulders. I've done that a lot over the years, but he's getting a lot heavier. So I tell him no. As I bend down to give him a kiss to reassure him, he jumps up violently, to try to get on my shoulders. His head runs right into my nose. I nearly pass out; my nose starts to bleed. Folks run up to me to hand me tissues. At this point, his mom comes out and starts to scream at me, claiming that I am ruining her day. (There's a reason we're separated).
Oh and, by the way, for the first time, my son had pimples, on his nose. Yep, here comes puberty. I have read from other parents how much more difficult it has been to handle their autistic children once puberty set in. I see the future and tremble.
So now, it's time to get a complete medical work-up and to start going to the gym a few times a week. As much as I've done, my boy is getting ahead of me.
And time to get a new EEG for my boy, to make certain none of the seizure activity has come back. Because I am afraid that it might be time to look at medication for his ADHD. I hate giving my son medicine, and I need to make certain that, if I do, it is for his benefit instead of my benefit.
So, there we go; on this adventure that he and I are embarked on. I still would not wish for any other son but he, and he is still the center of my universe. But look out; here comes puberty. Gulp.
12:36 PM PT: Thanks to echo still for figuring out why so much of the diary was bolded. I have edited to remove all asterisks. Should be less annoying to read now.
2:05 PM PT: I see that the diary is scheduled for Community Spotlight, which is pretty neat. I will have, unfortunately, already run for the train by the time it is scheduled for. So please forgive my lack of response to comments.