First Hockey Game

We took the boys to their first hockey game last night . . . it was Scout Night, which is how Thane found out about it. We were willing to give it a go since he won tickets to a Sea Dogs baseball game last year and he really had fun. He is so charming at games as he gets totally into it to the point of exhausting himself quickly.

It was interesting watching the monitors as they scanned fans. There was a little boy who was jumping up and flapping and my husband and I automatically thought he was probably autistic like Thane. Thane jumps in his chair, flaps, talks non-stop, etc., at games. Luckily we were seated among understanding folks.

Braeden hid from my efforts to take pictures, but I actually used my phone's reverse camera and took a picture of myself and Thane. I think the background is just perfect for us, and I am kind of surprised how much I think he and I look alike here. I usually think of Braeden and I as looking more similar than Thane and I, but Thane definitely looks like my child here.

It was fun, and I am really proud of Thane for being open to new things, and for Braeden for wanting to make it a family event . . . knowing it was a long drive, and that we likely wouldn't stay the whole game. Braeden was rather bothered by the fighting in the game. I have to agree with him that it is a bit odd having "Scout Night" and lots of kids there to watch adults brawling on the ice. All these people were jumping up and cheering, while my kids didn't like it.

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.

Thane, just a few days after his 9th birthday, wrote this letter to Santa Claus. It is definitely one of those things that makes a mom say "Aw! Isn't he cute?"

It was not only cute, it was surprising. Thane has Asperger's so I don't tend to imagine him wishing to do something for some unknown, ambiguous person in South America. I am also really proud of him that he messed some stuff up and was able to deal with it. OK, I also love that the paper is upside down because that just seems so much like my child.

It also made me remember when Braeden was about the same age. A teacher at his school suffered a significant property loss from a micro-burst (similar to a tornado) and there was a spaghetti supper at his school. Since Thane is gluten-free, we couldn't go to the supper, but Braeden decided to give his savings to the fund. He wrote a very sweet letter and packaged up his $71 and I don't think that teacher will ever forget. It brought tears to her eyes. A couple of years later, Braeden was saving for a large army set that was $250. He finally got to that amount when he decided to give it to a school in South America. His reason was because he felt bad for these kids having no parents, so he wanted to at least make the school better.

I think I have a couple of really great kids.

Teasing vs. Bullying

Today I am pondering when teasing becomes bullying . . . I think it may be a more difficult question when the child being teased has disabilities. I’m also not sure if I am more or less reactive to it because my child has disabilities.

I feel like Thane doesn’t fully realize he is being teased. On some level, I am really thankful for that. Growing up as the “Ugly, fat and stupid” one in my family, I think being oblivious to other children mocking you might be a blessing of some sort. I bet someone, somewhere will say something hateful about that statement, but sometimes how a person feels just is . . . and I feel like it would be nice not to be hurt, even if that comes from not understanding.

I talked to Thane and he definitely feels he doesn’t get along with this child and he is hyper-focused on an incident that took place a couple of weeks ago with LEGOs. I get the impression that this child sees Thane’s vulnerabilities and uses them to his own advantage. That really hurts me. I also understand that he mocks Thane’s gestures – Thane does some hand-flapping (which is something I do not consider to be within his control), is prone to stomping or slamming things if he is frustrated, and he does some visual stims. To me, mocking these actions is bullying because it targets things directly related to his disabilities.

From what I understand, this behavior is also impacting others in the classroom – particularly a couple of girls who have taken it upon themselves to either stand up for my son, or console him. While I am totally thankful that there are young people stepping in, I have to say that it concerns me that while it is obviously and opportunity for them to nurture and grow, it is also a sense of innocence lost because they have to witness an autistic child being teased. Moreover they have seen some behaviors and reported them to teachers and felt that their concerns were ignored. What kind of message is that? Is it that it doesn’t matter if a child is teased? Or maybe that it doesn’t matter if a child who doesn’t really get it is mocked?

Deep down I know that most likely there is something at home that makes this child behave negatively toward mine, and I think there is a limit to what schools can do – unless you have someone watching everything every single child is doing every second, you cannot see nor address every infraction that occurs. This is where the full beauty of homeschooling comes in I guess because you can control the environment so much more, but with a child with autism I feel like at least while he is little he needs to try to assimilate. In general, I have felt that the children in his grade are so much more exposed to autism than most of society that these wonderful little sponges have learned to be exceptionally understanding and supporting peers. But I guess there is usually at least one bad seed.

Things that Make a Mom go WOW!

Thane has some definite anxiety issues, and one of the things that was a really stressful for him was trying to write or draw. A year ago we turned the task over to hippotherapy and the therapist there got him to write while riding a horse. Now he actually does it for fun! Isn't this picture cute? The writing is his as well.

Asperger's Syndrome Cards

These will probably be a little hard to read here, but after looking around at a bunch of different autism and Asperger's Syndrome information business cards online, I decided I would be better off making my own. Thane's play therapist suggested that it may be easier on Braeden, age 12, to have a card explaining his brother a little bit so he doesn't feel embarrassed when Thane acts in a socially unexpected manner. I know a lot of adults use them too, so I made two versions . . . one for little brother and one for son. Otherwise they are identical.

Cute Giggle

Thane went horseback riding today and the giggle is precious.

Thane's Kindergarten Graduation

Case Management

Now that we have finally been approved for MaineCare under the Katie Beckett waiver, I went ahead and got Thane a case manager. It is someone I have known for a couple of years through the soon to be much larger Knox County Child Development Service (the state is going from 16 sites to 9 on July 1 – I hope it works, but I worry about the kids and access).

This person has been helpful along the way, so I am sure it will be a good thing, but it is a weird feeling for me. I am not used to taking handouts, and this feels like more of one than getting services through CDS when Thane was younger. Sometimes my friends make me feel like I don’t have the right perspective, that I am entitled to all sorts of help, but I still have trouble with the idea. It seems weird for the state to pay for respite for us just because Thane has Asperger’s.

Our yard does need to be fenced in again because we had storm damage and some is being held up by wire ties, but I feel that is our expense as homeowners. Yet I don’t mind the idea of getting a pool alarm. I guess part of that is that Dave and I don’t really agree on that, and I wonder how many times a bird will set it off, but I would feel safer having one.

Mostly I want an advocate when we go in to chat with the school. I do think the school is trying to work with Thane, but I think some of the action has been slow. I also need help finding some services, such as therapist who might be able to help reduce his anxiety level. I really want to work on that before he gets older because life does indeed get more stressful.

Update on the Boys

I guess I have really fallen down on the job here. I guess Facebook really dampens the blogging, at least for me.

The boys are doing pretty well. Thane isn’t having the best of times in Kindergarten. He is ahead academically, but socially he is having some issues. I also think he is learning some lousy habits and we’re not having much luck getting them corrected.

For some unknown reason, MSAD 40 is the only one in the area that doesn’t using Discovering Kids for behavioral therapy. They use Woodford’s Family Services. Unfortunately I was told confidentially by a teacher I trusted that Woodford’s was a bad fit for Thane as they use aversives and I am totally against using negative stimulus for a child like Thane. I have always been all about positive discipline.

Thane’s main problem in school is all the transitions. It has taken a long time for the staff to realize they needed to reduce the number of changes he has in his day, and that seemed to help for a short time. But basically he keeps hitting, pushing or getting in people’s faces. They are calling it “aggressive behaviors” at school, but it is really the wrong word. He isn’t doing it out of anger or to be mean, he really does not understand why he can’t shove someone out of his path.

Dare I say that this might be a typical manifestation of Asperger’s Syndrome where he simply doesn’t really see other people as people. And it is very normal for a child with ASD to decide the shortest distance between A and B is a straight line, no matter what is in between. I want the staff to prepare him for success better than they do.

I really like the ed tech who spends the most time with Thane, but I am really unconvinced that the staff, as a whole tries to be consistent with him. I have tried to explain that it adds to his security, but I think there is also a belief that he needs to learn to adjust. I look at him and I think he is still just so little. It is too much to expect of him. Keep him happy. Happy matters. Don’t suck the joy out of my little smiley boy.

So far most of what he seems to be getting is that people don’t want him to push or hit. So far that isn’t quite enough. But I guess we will just keep plugging along. I have been using some of the social stories at http://www.sandbox-learning.com – you can customize them, which is perfect for Thane. I recommend checking them out for anyone who uses social stories with their child.

Braeden has been having a fairly typical school year – nothing is really out of the ordinary for him. That, though, is a great step forward from last winter. He keeps himself busy and as he is getting older is he finding that he doesn’t want to be quite as busy . . . but he still wants to keep his theater projects up. He just appeared in “Willy Wonka” at The Waldo, and is now working on “A Hairy Tale” there as well. He also is dong “A Twist of the Tongue” at Riley, and then some as yet unannounced Shakespeare play. Then he has 2-3 weeks off in June before he goes to the intensive drama camp with Heartwood. I think all he plans for the summer is three weeks with Heartwood and then a week at Boy Scout camp. I can’t believe he is almost 12!

Horseback Riding

This is a little video of Thane really working hard at Freedom Riders, a therapeutic horseback riding program. It is the second year he has worked at Freedom Riders and I find it sad when the season ends. I wonder if I might miss it more than he does!?! It's just so nice to see him doing these tasks.

The biggest benefit this year has been with fine motor skills. Strange as it may sound, he was able to write his name without stress while on a horse. It seems to have carried over to his day reasonably well, so the therapist moved on to more strengthening skills. Thane is clearly having difficulty with the task, but enjoying it and really trying hard.



If the embedded video doesn't show up, follow the link.

Thane's First Day of Kindergarten

Thane started Kindergarten on September 8th. He had been worried about switching schools because somehow he thought it would mean everything would change, even his family. Dave went to two activities at school with him the week before he started, so he was comfortable with someone coming and staying, but I was worried that our leaving would stress him out so I made him a schedule of his day that he could refer to. It showed that I was going to pick him up, and had a photo of him and I smiling. It seemed to help, he referred to it for a little while, and then was thrilled when I picked him up at noon.

Taking his waffle on the road to finish on the way to school, and checking out his schedule for the day.

Being greeted in front of school by the resource room teacher. She greets him every day and guides him to his classroom.

Posing closer to the door.

Showing his schedule to the teacher.

Heading inside for his first day of Kindergarten.

At the end of the day, he was rewarded with this certificate.

Asperger's

I am trying to upload photos, but satellite internet is not cooperating (for the record, HughesNet is awful). So since I am trying to update my blog a bit, probably the biggest news around here is that Thane's place on the autism spectrum has been refined to Asperger's Syndrome.

It's nice to have a more targeted diagnosis than PDD-NOS, and Asperger's is something we've wondered about for awhile now. When he was 2 years and 8 months, he was moderately speech delayed and that generally rules out an Aspie diagnosis. When re-evaluated at 5 years and 5 months, his language is no longer delayed other than as it relates to social speech. He continues to be very concrete, and will still say, "No, I'm Thaney," if you refer to him by anything other than Thane, Thaney, or if I call him Lovey.

The team suggested that he attend public school. He does require extra support, which generally isn't available in private schools nearby, unless the school is specifically for special needs children. The problem with a special needs school is the lack of typical peers.

One of the reason's I haven't posted here in awhile is that I couldn't think of much positive to say about the thought of transitioning Thane to Kindergarten. I don't think Child Development Services nor the school district prepare parents well (though, in fairness, it is more the job of a case manager, which we don't have because we don't have MaineCare and can't get one without it. This is something I find really stupid because it means I have to accept subsidizing in order to get services, rather than allowing me to pay out of pocket.)

Thane visited the school where Braeden goes and that was a bad fit. I really should have known beforehand that it was a bad idea, but the thought of both children in the same place was so appealing. It was a bad experience for Thane, and one that has left me feeling guilty and questioning whether he was even safe there. Obviously he survived, but I want more for my little guy.

So it looks like as much as I dislike public school and it's factory mentality, our district seems to be offering the right things. He'll have a one-on-one, he'll be allowed to arrive late after the crowds. A one-on-one will meet us out front to walk him in from the car. He'll get speech and occupational therapy. We will keep our fingers crossed and hope for the best. It has taken a long time to reach this decision because there are so many pros and cons related to the various schools around here. I just hope we've made the right choice!