Family

This probably isn’t the best use of my time today, but here it goes anyway . . .
My estranged father passed away about 6 weeks ago. We had not seen or spoken to each other since 1999 when my family decided to emotionally attack me and my son my Braeden. I had gone through life being the ugly, fat and stupid one in their eyes (and words) and they had decided that because Braeden wasn’t social with them that he must be autistic. My father went so far as to say “but he is still okay to be around” – this from the man who picked him up as a newborn and held him at arms length away from his body.

I was devastated, but since the suggestion came from my brother, a psychologist specializing in early autism, I had to have Braeden tested. Every single person we saw for evaluation said that whoever suggested he may be autistic had no clue what they were talking about it. When we explained it was a Ph.D. who writes chapters of books on autism, they spent a lot of extra time showing us all the ways that Braeden was clearly not on the spectrum. The biggest issues were that as a toddler – he was 15 months old – he used to like run his hand over my braided hair repeatedly and he was a toe-walker. Toe-walking runs in Dave’s family. I have to say it was kind of charming because Braeden was an extremely graceful small child who could toe walk across a balance beam at gymnastics with sheer perfection.

Anyway, I had told my family prior to our visit that while I had put up with the verbal abuse and degrading my whole life because they are my family, there was no way I would allow them to do the same to my child – I would protect him a way that no one ever protected me. After they sat me down to tell me Braeden was autistic, we grabbed him, me in tears, and left. That was that. We saw our family doctor immediately and she said, about Braeden, “He just doesn’t like your brother! And neither do I!” I was in tears and my little 15-month-old was comforting me, very clearly concerned about how mom was feeling.

The only communication I received my father after that date was the letter saying Braeden was still okay to be around, and he may have also been the one who called a year later to tell me my sister was in the hospital (but I can’t remember whether it was him or my mother’s cousin who did that).

I was a much healthier and happier person without this constant negative barrage in my life, but it also hurt because this is not what family should be like. I don’t know how many conversations I have had with Braeden, now 14, about how I never want him to walk out of my life. He did, I would still call on his birthday, or send a card, or somehow find a way to communicate with him that no matter what I will always love him. There may be times when I may not like something he does, or perhaps I won’t agree, but I will always, always, always love him.

Thane came along 4 and a half years after the family divorce. He had issues since the say he was born – failure to thrive, sleeping 21 out of 24 hours, being a very unhappy little baby. We started questioning what was up with him well before our doctors did. He would learn a word, but then if he learned a new one it would replace the previous word. If you tried to get him to talk, he would cover his ears and turn away. He didn’t respond to his name. His speech therapist at two felt he had a childhood apraxia of speech. He was diagnosed with PDD-NOS at 2 years 8 month (in part because it takes a good six months to get an evaluation around here), including sensory integration disorder. At 5 years 5 months the diagnosis was refined to Asperger’s Disorder, though I have some minor conflicts with the diagnosis. I thought it was only for those without a speech delay, but Thane had a moderate- to severe- delay at that first evaluation, though currently has no speech delay (his skills are somewhat Swiss cheese, though, where he some fabulous skills and some issues with conversational and social speech). His most recent evaluation at 8 years 6 months has him with Asperger’s Syndrome, Anxiety Disorder-NOS (some perfectionism and OCD), and, of course, he still has sensory integration disorder. Imagine what fun my family would have putting him down. I can see them all just running their fingers through his hair to make him scream.

My brother left me a message the day after Thanksgiving that my father had passed away that morning. I spoke to my brother very briefly, told him I was sorry for his loss, but felt that if there were services that I wouldn’t be attending as I would cause more stress than anything else. I know my father’s wife would not want to see me, and I feel no desire to make things any more difficult on anyone. I believe funerals and such are for the living, not really for the person who passed.

I have had some condolence letters and flowers sent to me – the flowers from my husband’s family, who have always accepted all of us, quirks and all. Some of the cards I still haven’t opened because my sense is that most people don’t really get what my feelings are. When I was little, my mother really seemed to not like me. She got sick when I was about 10 years old and wasn’t fully diagnosed until I was 13. She had a brain tumor and was operated on when I was 13. I remember when she was sick having her tell me that she didn’t give birth to me, that I was only my fathers. I actually searched her dresser looking for proof – hoping for proof that I wasn’t hers – but I found the hospital bracelet from when I was born. My sister found me crying on the floor in the bedroom because I found out mom was really my mom and I had truly hoped she wasn’t – it would explain why she didn’t like me.

I remember getting sent to a psychologist at boarding school because I said something about my mother being nicer to me after her illness. I was told I was horrible for saying that. Perhaps I was, but she was nicer to me and I did more to take care of her than my siblings did. I think I was searching for a way to get her to love me. I remember when she died a bit part of the pain was realizing I really would never know that my mother loved me.

Move forward 15+ years now and now we have my father passing away. Same thing. He is gone and there is no way to confirm that he actually loved me. His actions say no. I was told over the years that I could call him, etc., but phones work two ways. I haven’t moved in 25 years, nor changed my phone number in that time. He couldn’t have said the same thing. In fact, he moved to about an hour away from where I live and never said a thing, never tried to see us, never tried to see his grandsons, or anything. He may have felt that he was respecting my wishes, and I understand on some level . . . but as I have told Braeden, I would always find a way to wish him a happy birthday and let him know whether or not he wanted me in his life, I would love him forever. My conversations with Thane aren’t as deep – I just assure him that I will love him forever and he replies “I know!”

So why I am I writing this six weeks later? Because on Saturday I got a copy of the will and it all just reminded me that now both of my parents are gone and there is no chance to ever feel like either of them actually loved or cared about me. My husband, who has been with me now for 27+ years, pointed out that I was a misfit in my family – they just aren’t loving people, while I am. My ex sister-in-law told me once that they all looked down on me because I was common, where they think of themselves as aristocracy or something. My siblings think they had a great childhood traveling all over and I feel like I had a childhood of being dragged places. They went to ivy league schools and I went to the University if Maine.

More than anything, I hope my own children never decide to divorce me, and that they always know that I love them more than anything. We had a lot of trouble maintaining a pregnancy. I have told Braeden that he is my miracle. Why not? He is! He is definitely not autistic. He is smart, funny, and wonderful to watch on stage. And Thane is my very welcome surprise. And yes, some people may think he is less because he has autism, I will tell you he is definitely different not less. He is sweet, charming, quirky and totally lovable. His joy is so palpable it resonates through a room and everyone smiles with him. Too bad for you, my birth family, that you had to miss out on knowing them because you thrive on being superior and critical . . . they are worth far too much to me to allow you to treat them the way you treated me.

Catching Up A Bit

Life has been a bit busier than usual around here. Wait a minute! How could that be? Well, somehow it has happened.

First, we have been working on cleaning up our house and yard a bit better. It is actually making some progress, slowly. I think my friend Kim will be coming once every week or two to help us out, which will be good now that we are no longer having developmental therapy at home or many home visits over the next month or two from anyone.

Dave’s parents came to visit. That totally thrilled Braeden – he liked having people to pay more attention to him. He’s actually harder in that respect than Thane as he always wants people to play or do something with. Grammy got to play lots of games, go ice skating, etc. Thane knew who they were, and even hugged them when they came. He didn’t pay a ton of attention to them while they were here, but he paid more than I really expected . . . and he was regulating himself well. He didn’t let himself get too upset – if he had to go do his thing, he did. The 5-hour drive is a bit uncomfortable for them, but I haven’t really figured out how to travel well with my machines.

Thane has been cute. I was sitting at the kitchen table with Braeden having a talk, and Thane came out and said “Hand.” I gave him my hand, he grabbed it, started shaking, and said “Nice to meet’cha Mama!” Braeden and I started laughing because he was just so adorable. I assumed he learned it from school, but I think it was actually from one of the series two Signing Time! videos.

Along with worrying about him not learning the potty, which he did as quickly as any neurotypical child, I was worried he would have trouble learning letter sounds since he knows the letter names. Again, courtesy of a video (Leap Frog), he learned all the sounds in a day or two. But that brings me to our latest discussions about his behavior. The analyst suggested that he doesn’t have trouble generalizing, but rather than he over-specifies, which appears common in autism spectrum disorders. I think people have a tendency to think that with all his delays and early intervention that Thane probably isn’t all that intelligent. I, on the other hand, think a lot of his “issues” could serve him well. His powers of observation are excellent. His memory is absolutely amazing. His He sticks with things, opens his eyes wide, and really challenges himself to understand (he also just put his undies on his head, but that’s another story!). Perhaps his ability to look at things differently than most of us will help him find the key to something that needs figuring out . . . and his ability to completely tune-out naysayers would actually come in handy!

I’m doing the newsletter for Braeden’s school now, so that is a new challenge of the variety I generally enjoy. I am finding out that my carpal tunnel doesn’t like handwriting much – the computer is actually better. I am also trying to help out with public service activities at Thane’s school, including freezing plates of food for elderly people. We helped out with the Thanksgiving drive, and will help with the Christmas activities as well. I have everything wrapped for Chanukah – and Thane can say the word this year! His speech is so different. He has a lot more scripts that he uses well, but he also is using more original speech so it really wouldn’t stand out to anyone who doesn’t spend a lot of time with him.

Thane just went in and told Dave, “You’re you!” and he likes to say “Yay! You found you!” Maybe he knows we’re lost while we don’t!

I guess that’s all for now. No one would want to read these long messages!

Happy Thaney

We got Thane a twist trike that can be used as a regular tricycle or a Big Wheel-type vehicle. He was thrilled and had a blast. You can also see some of how he has been playing with his mouth lately. He's pretty excited to be gaining more muscle control!

The Long & Winding Road

This was not a banner week . . . I wish I was enjoying having both children home, but I simply cannot say that I am. I think it is because I don’t get any time off – even bathroom visits are rarely un-interrupted.

Monday was the worst. I’m still not feeling very chatty about it, but Thane decided to remind me in the worst possible way that he can’t be trusted. I think what is bothering me more than the fact that he could have died is that I tried to stop him and he gave me that look from when he was first walking – the absolutely beautiful smile over the shoulder followed by total reckless defiance. I am still very sore from trying to rescue him. And I think it hit home in a way that is hard to explain. This is where autism sucks – I know I shouldn’t say things like that, but the truth is that it does. How am I ever going to trust this unpredictable child, and if I make the mistake again, will it work itself out the way this event did?

Afterward I really just felt like I wanted a break. I have wanted one all week. But the reality is that I don’t trust a lot of people with my children, especially Thane. I trust his teachers, but the one day I took him to school this week, I ended up talking to his case manager and then having my car battery die in a parking lot because Braeden had the DVD player on when the car wasn’t running. I was supposed to go to the doctor, but apparently the case manager forgot that I said no . . . and I don’t do well and dismissing the person in front of me.

Of all the people we deal with, the case manager is probably the one I like the least. I think she sees the glass half empty with Thane, maybe totally empty. She always talks about “children with his diagnosis” as opposed to him . . . drives me batty! The therapists and such all seem to have different ideas. It appears that we have our choice of a preschool that is completely children with disabilities – most with speech problems – or possible a couple of places that seem rather like we’d be slumming. I know that sounds awful, but Head Start looks better than these facilities, yet we can’t get into Head Start because we’re over income. The private places either won’t take a child with his diagnosis, or want him to have a one-on-one. I guess I can see him needing a one-on-one, but a good one of those can be hard to find too.

He’s technically two years away from Kindergarten. We are also highly unlikely to even consider public school for him. I don’t tend to “believe in them” for boys to begin with, but add special needs and I really dislike the idea.

It looks like we’ll do five mornings a week at the developmental preschool. He will have occupational and speech therapies there as well, sometimes one-on-one before starting the school day.

Then there is the problem with getting him access to typically developing children. It’s been exactly a year since his diagnosis and the team of evaluators was clear that there should be access to typical peers. I have been asking, trying, etc., with no luck. Activities like the park and story hour just don’t cut it. Many parents also don’t want to “subject their child” to someone like Thane. After all, he might hurt their feelings by refusing to play. I understand on some level, but it does make it hard to find that interaction!

We’ve tried gymnastics and the class gets cancelled. Swimming was suggested. I may consider that – there is a coach-therapist at a country club near Braeden’s school. It needs to be private lessons, though, for his safety and because his immune issues might make him miss more lessons than he can attend (we were out of school on Wednesday with spots and green poop, and out today because of a bloody nose). A creative movement class with his home developmental therapist was suggested by the school DT, but I just don’t think he can abstract and make himself a tree. In fact, I was just noting that the more things change, the more they stay the same on some level. Now that he knows his name is Thane, for example, we can’t call him anything else. I call him peanut, like in that little YouTube video posted earlier this month, and he corrects me. The dog is no longer a dog (with a Brooklyn accent), she’s a Misty. I know all small children are rather concrete, but he seems more rigidly so than most.

I guess we’re looking at trying a low-rent preschool for one or two afternoons a week. I will have to further investigate the worth in doing something like this. I’m shocked that these places seem to be located near cement plants, concrete batch mixers, pavement companies, town wastewater plants, and places that just seem way too toxic for a child who doesn’t detox things well! Maybe the next one I find will be in the same building as a bakery so he could be glutened daily too.

Oh, I can’t forget this in my long ramble here that one of the schools the case manager suggested actually straps children into chairs until they finish a task. The DT told me that they strap the kids around the middle and strap their legs, and then have them sit in that chair until they have made five worms out of Play Doh. She thought it would totally break his spirit and was inappropriate for him. I wish sometimes that the therapists and case manager would discuss these things before bringing them to me as anyone who knows us even slightly would realize we’d never strap our child into a chair, much less force him to touch Play Doh. It has taken over a year for him to bring himself to do anything with gluten-free dough. Early on the sight of it made him vomit. Even though he can do it now, I would never force something that is so unimportant in my mind.

I found out yesterday that the speech therapist isn’t going to be giving therapy at the preschool anymore – it is going to be an education technician who will work under the SLP. I can’t decide if this is good or bad. Thane gets more of his speech success from home. His SLP doesn’t work on the motor-planning issues. Maybe the ed tech would concentrate more on that?