I was 37 when my son Michael was born. In contrast my wife is a loving person. We had tried for years to have a child, before Michael there was a miscarriage, and my wife grieved over that child partly because she was so excited to have that first child, partly because I was the father of that child. Before we got married my father told my wife and me not to have a baby because in my family there was something mysterious going on with my brothers. Something was wrong and they were sent all the way to NIH in Washington to find out what was wrong. My younger brother had trouble walking, I remember and was angry at my parents constantly, and also timid about life. He couldn't relate to women, he never married, never held a decent job in his life, and mercifully died in 2010. My older brother when he went to graduate school suddenly broke down completely. He was very slow in everything, he drove me crazy! As life went on he became paranoid, had little in the way of jobs, and never married like my other brother. He couldn't relate to women, and yearned until the end to have a wife. He mercifully died in 2017.
My wife didn't want a baby originally, wanted to adopt, but I wanted a biological connection. To please me we had Michael. In the early years after he was diagnosed she was understandably upset. Now she's proud I'm his father.
I'm 37 now! Is your wife much younger, or was she in her late 30s, too?
I'm really sorry to hear about the miscarriage. I think sometimes people feel I'm upset about having kids with special needs; I'm not. I'm just thankful I never had a miscarriage, and that my children are physically healthy.
Do you think what your brothers had was autism related?
I would like to adopt, even now. An older child, maybe between LeeAnder and Ares's age. That will never happen, though. It takes a lot of money, which I think is dumb. You create as many lives as you want, but unless you're rich, you can't step in and take care of another.
Initially, I was happy with just one child, but my husband wanted one of his own. And that's where Ares came in. After Ares was in school, I was fine with a third. I think he would like another one, but with homeschooling, I think it would be too much. I don't mean any ill towards him when I say this, but he isn't helpful with the kids in the least, and 4 would be a lot of work for me.
When we travelled to Florida to see my wife's family we stopped on the way in Georgia to visit friends, and they had a young toddler who was speaking though he was 6 months younger while Michael at age two wasn't talking. I was alarmed! There were warning signs before this but I had ignored them. One thing I noticed about Michael was that he would run back and forth outside, apparently looking at his reflection in the windows. Up until even age 16 when he left us he would eat very limited foods. Any other foods was poison to him. This reminds me of your son son starving over unacceptable food. He only would drink water. Anything else he would make a face, then refuse to drink anymore. He twirled plastic lids on the floor. I should have connected that to the TV show where this young boy twirled plates. He didn't advance in how he played with his toys. He said a few words when he was 6 - 9 months, then he stopped. He engaged with us in a lively way, then it was as if he didn't have that life any more. It was less obvious then, but we have pictures of him that show that. It snuck up on us gradually. I have heard that autism sets in at about 1 year old.
I remember being alarmed when I saw LeeAnder next to other kids, too. I learned to adjust my expectations, and celebrate
his milestones, not the ones society wanted. "Oh? Your child is top in the class for reading? Excellent. My son has low marks, but he knows who the local school superintendent is, and has a well formed and educated opinion on her performance." He wanted spoons, we gave him spoons. As he got into electronics, it became more problematic, because he would get angry and break them. I liked the spoons better. He still breaks his stuff. He busted a computer monitor a few days ago.
Ares initially would only eat 4 foods. Rice(my husband called him Vanilla Rice because he ate so much of it), yogurt, bananas, and ramen noodles. It stressed me out to no end. However, in the last decade, they've started something called 'feeding therapy'. It wasn't around when LeeAnder was little. However, it worked wonders for Ares. It took a lot of time, but slowly he began to eat a fuller palate. He eats like a normal kid now. Yudhi also had to go through food therapy, but that was regarding his tongue tie and not autism.
I'm really happy none of my kids did the regression thing. It was always kind of there. I can't imagine the panic that would make a parent feel. My kids didn't engage with others, but they engaged with me. I often mimicked their play. I still do. I think this helped me interact with them. As LeeAnder grew, he would engage with other adults, but not kids. He didn't care for other kids. He would call them 'the children' or 'my peers' with a sneer on his face. Ares likes older kids and adults. He doesn't like kids his age unless they're really rough. He is very strong, and I think he knows kids are fragile. He would bully his teachers and staff, but never the other kids when he was in school. I think he knew the adults could take a box to the head, while a kid can't. He is very rough to LeeAnder(who hates that), but is almost always gentle with Yudhi(other than the occasional spat over a Hot Wheels car).
I am ignorant about the difference between autism and Asperger's. I looked up descriptions of both and couldn't tell them apart. I saw a psychiatrist who was substituting for one day and his impression was that I had Asperger's. I hadn't even suggested I was on the spectrum. That is a sna judgement, however.
Honestly, me too. I don't think they officially use the term Asperger's anymore. Its just considered part of the autism spectrum. I thought it was a helpful term, though. When I first was confronted that LeeAnder was not developing averagely, the term Asperger's fit better. When I thought autism, I thought about the people I worked with in the group home who were severely afflicted. (I worked in a group home for the handicapped for over a decade.) Asperger's fit much better.
Your second son was worse. That was the reason, I guess, your first son who wasn't as bad wasn't your last child. The main problem really that made our son so difficult that he had a compulsion to run away from us at unexpected times. We had to make sure he couldn't get out of our condominium. He drove my wife crazy, and to keep her sanity Michael was sent to a group home.
Wow! Ares does this, too! We have to put a padlock on our front door or he'll run out the door. We've also got optional locks on our back door(which goes only into a fenced in yard) and our kitchen. Ares tends to 'cycle' with his bad behaviors, and he may play happily in the yard most days. But on some bad days, he'll jump into the dog side of the yard(we keep them separated because they're big dogs with big turds to be stepped in). I give him a warning, and if he doesn't comply, I get out my keys and lock up the sliding door(the locks were specially installed for him). The kitchen isn't usually a problem anymore, but he used to go out there and dump food on the floor just to get a reaction out of people.
When Ares does get out the front door, he'll try to run away, laughing, and I act like I don't care, get out my keys, and tell him I'm not chasing him, I'm just going to go live in the nice house in New Jersey I found on the internet. "No! Not Mom-mom New Jersey!" he'll yell at me, and he'll come collect me and take me back in the house before I can get away.
Most of my methods that work with him are very strange, and very unconventional. I sometimes think everything in my life led up to me being a parent of autistic children. The work in the group home gave me a bit of insight. Also, it sounds weird to say, but the fact I never wanted a career was immensely helpful. I worked and paid bills, but I was happy doing just that. I never had any big ambitions. I actually turned down a scholarship because I didn't have a desire to go to college. If I had wanted a career, Ares would have ruined it. Daycares wouldn't have taken him(my dad tried to put him in once for me, so I could have a break a few hours a day, but they kicked him out after a week). I would have been devastated. But! I didn't want it, so I'm fine! I was also used to not being an oddball, so my kids being different didn't bother me either. Lastly, the powers that be gave me a nature that doesn't upset easily, and a detachment from material goods. Kid busts the couch? Whatever. Its just a couch. We'll buy a new one(or, as we often do, find one on the side of the road). Sometimes, this attitude keeps me from bonding well with other adults, though. They want me to have big goals and to find happiness in stuff, and when I can't... well, there isn't much to talk about. My family often looks at me "how does he not drive you crazy?" I just tell them he doesn't(because he really doesn't), but that our society kind of does, and then they laugh(but I'm being serious).
