REGRESSION

There is an R word in the special needs community that people rarely say and it is not the one you are thinking of. It is regression.

Regression is a contrary brat. You teach your child the skills they need to hold a conversation, play in the sandbox with others, make friends, get through an entire tightly scheduled school day, and to plan their homework. They learn these things and you have a great year. A great six months, a great super long span of time and you think this special needs parenting thing is not so bad. You got it.

Then one day you realize one or more of those things are not happening now the way they used to, that children are being bullied by your child and homework never makes it home and your child is throwing fits at you as if he were three and yesterday he pinched his sister.

This is the fault of regression. Your child no longer has the skill or skills he once had, and you have to go back to square one and start over on teaching him.

Then in your spare moments you rack your brain trying to figure out if your son had a recent trauma that would cause such behaviour. You date his last fever and you call the school and the daycare providers and ask if his regression dates from within two weeks of that day. Because that could be mitochondrial issues, necessitating very invasive testing. You think about seizures and diet and f*@#ing everything, desperate not to get the skills back, which you know is a lost cause, but just to get your kid back on some sort of level playing field so he can be ready to learn all over again.

On the phone with the school they describe the behaviours you have not seen in about two years and you die inside. The school thinks he is being difficult. You explain this is a medical issue, he is AUTISTIC. They insist he learn to love the drag on a pencil and you explain he has sensory issues, that in fact he has SENSORY PROCESSING DISORDER which you have explained until you are blue to everyone at two schools and finally someone says they will let him use marker. So the pencils and the crayons don´t hurt his brain anymore. He can use marker after his one sentence in pencil and you thank the gods for small favors.

But really your kid is just autistic. There are a hundred comorbid disorders that could be diagnosed later in life, but that brat regression is not going to finger anything specific for you. You have to find a pattern. You need the right mind reading supernaturally insightful doctor. You find a story that matches yours so exactly that you start asking questions based on the diagnosis of the kid in that story. One question to the right medical professional might pan out. You fumble around, lost, trying to help your child learn to survive in an unsympathetic world and you just pray that somebody, somewhere, understands that he is not ¨being difficult¨. He is REGRESSING. It is not part of his learning process. It is his neurology.

You start the education back at square one, you alert the medical team and you wait. Because you are helpless. Because regression is not a fight. You just lose. You lose.

Children: Natural Hackers

At my son´s school they let them have ¨free time¨ on tablets. I assumed tablets maybe linked to a LAN and certainly with teacher approved apps. I never thought they were tablets hooked up to internet, unfiltered.

The teacher assured me there was a security filter over the internet gateway. The principal told me they did not know how my son bypassed their security and received results from typing the phrase ¨g boob¨ into YouTube.

All I know is that my oldest son is always coding, in the most primitive form, and my youngest son is merely watching videos of people playing videos. My seven year old is not a hacker. But he did it.

So they talked to him. They kept him in at recess. Which is actually pretty devastating to him, though it does not phase his brother.

I advised the school keep him off the tablets from now on, for liability´s sake. I suggested books instead. I gave him restrictions lasting six months regarding electronics. I told him he cannot go to a friend´s house for probably the same amount of time, as I cannot trust him to follow the rules I give him when he is outside the house. I advised his doctors of his indiscretion and then I forced him to attend a half hour class on female anatomy- taught by me. I also reminded him that he did NOT have permission from the women in the photos to view them, that whether they be in bathing suits or scanty dresses it is impolite to stare and he may not, without consent, ever. But that at a certain age, he may, with consent. Because doing so is damaging to his development – and illegal in this country.

Then I internally cursed the culture I live in, which has failings as all cultures do, but seems to be particularly handicapped regarding sexuality and the body.

His reactions? He was contrite with his teacher. He cried the morning he was due to see the principal and couldn´t eat. He tried to get out of attending class on anatomy and he begged me not to tell his doctor (child psychologist). But I explained to him that his curiosity was normal and I was relentless. I told him that if he finds breasts so attractive that he might be one of those who is attracted to girls more than boys. I told him this is normal, that he will have strong feelings about attraction all his life and it is like that for nearly everyone. I hope that taking the mystery and stigma out of the equation will make him less interested.

The Children Meet My Ex

Two Sundays ago we went to the zoo. We met one of my oldest friends there at the entrance, and had barely got down one trail when I saw before me my ex-husband´s new wife. I had only seen her in pictures before, but she had a sweet and distinctive face and I knew it was her. Especially because my ex-husband was standing next to her, or rather, leaning over a stroller.

I had not spoken to my ex-husband since about 2003, when he divorced me. I did not want a divorce, so I tried to negotiate anything but, though in the end I did not fight him because I do not believe in trapping people. I was so angry after that divorce that I could not speak to him. I lost my future and my entire family in one fell swoop. Which is silly of me, to view it as a loss. Because obviously his family did not miss me, or they would have contacted me. And it was my own folly to put them through school and neglect my own education. No one to blame but myself that I did not get a turn to attend university.

I have missed them all terribly, my in-laws. I managed, during some of the worst times, to put them out of my mind, but I still regard them all with affection. They were my siblings and parents and I loved them more than my own. Then I had the love but had not the family and it was a deep wound that I tried to fill for years. Now I know better. Now I understand that the pain is a part of me, nothing can fill it- but time and perspective can make it shallower, less painful.

When I look back at it I realize that most likely no one in the family believed that I truly loved them. I assumed that hard work and gifts would make it all apparent but nothing can convince those who see only fault. I had not grace nor diplomacy. I had not culture. I had experienced homelessness and I did not come from a good family. I was barely good enough for them, especially in light of my social awkwardness and the mistakes I make in conversation,  all the fifty hour work weeks and tuition payments and cars would not guarantee me their love nor their respect.

I was doomed but I was so happy I never saw it coming. I held absolute faith in my marriage and my family. It was eternal in my view and so it was a comfort to me. This self delusion was the happiest time in my life.

So we are at the zoo. My children like to keep going. They like to complain and they like to keep going. So we walk and walk at the zoo and what I hear is ¨My legs hurt, I am hungry, is it lunchtime, my legs are tired, are we at the park yet, can we go see the fish..¨ The children love the zoo, I know, but while we are walking the trails (my favorite) they turn into little complaint machines. My ex-husband sees my friend and comes over to give her a big hug. I go to his new wife immediately and introduce myself, so we can skip the awkward scene where he has to explain I am his ex-wife. They show us an adorable new baby and a sweet little girl who looks as I always imagined her to look, all my adult life. Very lovely little girls, and of course, neither of them complain about stopping or going or anything. It was all very civilized on the part of the adults. My children wanted to be doing other things and of course they wanted my attention, which is normally theirs, so they were not very civilized. His new wife is lovely and funny and everything I would want for his family and children. He tells me he is working at a company where I used to work, where we met, actually. His wife asks me if I used to work there, and then we have the awkward scene where he explains I am his ex-wife. She hadn´t understood when I introduced myself, just who I was.

I did not ask about my former in-laws. If they wanted me to know how they were they would have reached out long ago. I did not look much at my ex-husband, it is not respectful in his culture and old habits die hard. I did not speak much to him, either, for the same reason, though I did answer his questions. But I really liked his new wife. She comes from a great family and she is established in the community and she is well traveled, cultured. She works at jobs I would have liked to do, myself. Best of all, she is funny. I just love humorous people.

After maybe ten minutes we excused ourselves and said goodbye and I waved to the adorable little girl who was hanging onto her father´s leg and jumping up and down, she had never said a word though I tried to talk to her about her aunt, who she resembles closely. She looked as I had always thought she would look, even seventeen years ago when I bought a little red and white dress for my future daughter, I had imagined such a face above the ribbon.

I explained to my boys who we had been talking to and they were as stunned as I. But I am afraid that surreal feeling stayed with me all that day, whereas they were over it in a few minutes. They had a great time at the zoo, even though the parks were closed. We played in a giant sandbox and we bought souvenirs and we made plans to go back. On our way home we drove through neighborhoods where I used to live and love with their own father and talked about how he used to be, before they were born, before he got so sick that we had to leave.

Losing a family is hard.

Do You Think Visually?

I just want to know.

I think often in pictoral representations, like customized free form graphs.

Do you?

I Met Another Mother Today

Today was a good day. I met another mother today, who has two special needs kids, like me. One, aggravated ADHD, the other Autistic and MD.

She homeschools. She uses the money she gets for supporting her disabled kids to supplement her own income and her husband manages the kids at home. I cannot imagine what that is like. I would love some arrangement like that, but I am not so sure it would work for my kids.

I liked her very much. She claimed she was overprotective, I am quoting, here. I was too shy to ask, overprotective how?

I asked if she did Special Olympics. She does not. I have the strongest urge to call her up and ask her if she wants to join my son´s social group. But I have this sneaking suspicion that by overprotective she really means it. That she does not take her kids out to do things with other kids.

This is the hard part of special needs parenting. My child might be more mobile than yours, your child might be better at academics than mine, but by goodness, we understand what it is like to have a kid meltdown in aisle 4 or be criticized by a teacher for their very disability. We just get each other, and there is no judgement. You meet all these fantastic people that you can learn from, and you see them maybe fifteen minutes a month. You see them maybe never, like the mom I met tonight.

We all need each other´s support so badly, and we have no time to give or receive it.

She said she had no life. I said I didn´t have one, either, and I don´t need it like that. She didn´t need it like that, either. We knew.

I feel like baking her cookies and inviting her over. The last time I did that it didn´t go so well, and it makes me nervous. I don´t know why my invitation was ignored. I want my kids to be successful and social creatures, and I would feel awful if I was getting in their way.