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.

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.

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.

Halloween 2009

I have been meaning to post these photographs for about a month. I am partial to the first one and the last one! The extra child is a good friend of Braeden's who spend part of Halloween with us and is a frequent visitor at our house.

The only disappointment on Halloween was that the Waldoboro Fire Department went all out and decorated the old middle school as a haunted house . . . but we never got in because the lines were too long. Thane really thought he wanted to go, but it was probably just as well.

This year Thane really understood Halloween much better, kept his costume on (he was a witch, while Braeden was a necormancer), and visited quite a few houses. It was even easy to switch candy with him so he only got items that were gluten free and egg free. I have to say it was considerably more successful all the way around than it has been in several years.

Thane's Preschool Graduation

Thane graduated from Coastal Kids Preschool this morning. He was cheerful, but overwhelmed. I felt kind of bad for him since he was really excited and proud, but lots of people, lots of noise, lots of flashes going off. He needed support, but he did pretty well considering . . . and he looked cute!

Walking in . . .


Getting nervous, starting to hide behind sleeve.


Needing support from Miss Laurie.


Off with his hat and trying to be calm.


Getting his diploma from Miss Priscilla.


The diploma made him look proud!


And happy!


It's hard to capture in a still image, but he was waving it around and then doing visual stims with his diploma.


Here's the diploma!

Dressing Funny

Anyone who reads this blog probably realizes that I find Thane rather charming. Last night I decided to change into my nightgown, but decided I was too cold to remove my pants after I made the upper half switch. I figured it was no big deal. I walked into the living room where Thane was playing on his Nintendo DS and he looks at me and says “Something’s not right! You’re wearing pants, but that’s not a shirt!” I had to agree with him.

You know what is really wonderful? He can make a statement like that, laugh about how silly I am, and not let it really rock his world the way it might have in the past. A year ago I bet I would have given in about the pants and grabbed a blanket instead because he would cry and tantrum because what I was doing was “wrong.” Now he is starting to just laugh at my silliness and enjoy the fact that Mama’s goofy.

Chauvinism?

Thane tells me, “Mama, you’re not a toy.”

“You’re right! I’m a Mama. I’m a person,” I said.

“You’re not a person! You’re a girl!” he tells me.

The peanut gallery, known around here as Dave, added, “Thane harkens back to the old way of thinking.”

Further discussion indicated that boys are people, but girls are girls.

Hating Waiting Rooms

Last night I decided to do a little blog reading . . . I checked out Heather’s blog – she’s one of Thane’s former teachers and she has a little boy with autism who is about a half year younger than Thane. In her blog, she wrote about things she doesn’t like:

* waiting rooms- no matter what the response I get from the other people in the room towards Brian I don't think I can be happy- "every child develops at their own rate", "nothing seems wrong with him to me", and of course the staring and rolling their eyes---- okay, sometimes I have had good conversations in waiting rooms but today i'm feeling bugged by this

This one jumped out at me because I feel so much the same way. No matter what someone says about Thane, I tend to feel irritated inside. If I explain that he is on the autism spectrum, I will get comments similar comments to the ones Heather mentions, or sometimes be met with sadness and pity which bugs the heck out of me because my son is wonderful!

One of my worst experiences in a waiting room was a time when there was only one other gentleman in a large waiting room with us. He was trying to be nice to Thane, who was crying because he hates the sight, smell, look, long wait, etc., of a doctor’s office. He can be okay in the exam room, though he often goes and hides in the cabinets under the sink or some space where only a little person can get into. On this particular day, Thane was wearing a pair of appliquéd overalls with a pirate design on them. When the gentleman couldn’t get my then pretty much non-verbal child to reply, he decided that Thane must be a “bad pirate.” The tone was one that was mixed with an effort to sound funny with air of “what a brat you have there.” I looked at him with my eyes burning and said, “No, he’s a scared a little boy!”

Once at horseback riding this summer, I got a comment from an older woman that Thane just wasn’t what autism looked like, especially when she was younger. No, he isn’t what autism looks like. He is what Thane looks like, and Thane happens to have an autism spectrum disorder. Are there some children who are more profoundly disabled by their autism? Yes, definitely. Are there some who have it easier than Thane? Probably, yes. But you know what? It doesn’t matter! It isn’t about comparing this kid with that kid or anything like that. It’s about Thane being the best, happiest, healthiest little boy he can be – for him. He deserves that.

I get so many comments about how hard it must be to drag him from therapy to therapy, to live with him, etc., and then all the comments to the opposite about how silly to do all this to him (note the use of to, not for him). It’s a tightrope that any parent has to walk . . . how much do you push? Where do you push? Why do you push? Some therapies or suggestions aren’t ones I consider important for Thane, while others are. I’m willing to bet that where each family sways on that tightrope varies – and that is okay and as it should be. Trust me to do what it is right for my own child – believe it or not, I actually know him and will do my very best to support him. When I’m pissed off and preoccupied with being judged, I’m not as available as I should be. I need to, as my friend Alicia says, “Be a duck. Just let it roll off.”

Quotes from Thane

“Mama, your voice sounds funny,” Thane told me this morning.

I started to reply, “Yes, my nose is . . . ”

He cut me off and said, “No Mama, it’s your mouth. Your mouth sounds funny. You’re so silly, Mama!”

I smiled and agreed with him. It is my nasal congestion making my mouth and voice sound funny. My nose doesn't have sound coming out of it (usually).

He’s quite literal.

Another cute one . . . On “Barney,” the purple dinosaur and his friends sing about “Please and Thank You” being the magic words. Thane asked Braeden for something, but didn’t include please to be polite.

Braeden asked, “What is the magic word.”

Thane replied, “Abracadabra!”

I love it!

Christmas Pictures

It is always hard to pick a few photos to post. I got the video up fast figuring it was timely, but took a few days to decide what to post for stills. These are some of my favorites. I loved Braeden's expressions and I felt like I caught a moment with Thane's Handy Manny radio (he played with it half the day, too) as his happiness was clearly visible. It was a good day, even if we were all too tired.

I guess I should mention that the night before Christmas we all headed upstairs to watch Rudolf. Thaney couldn't sleep until about 1:30 a.m. It is the first year he really has a solid grasp of Christmas, so every tree branch brushing the roof had him asking if Santa was here yet, or if the reindeer were on the roof. It was cute, but I was worried he would go down and open everything all by himself.

Then after he was safely asleep, Braeden woke up . . . and noticed Dad wasn't upstairs. So we talked and talked about things, including the mystery of Santa. Dave came up and explained that the ice backup was making rain come into the sunroom again, so he was downstairs sopping up water and drying furniture, plus he went out to rake the roof. It was after 4 by the time Braeden was asleep. We woke them up at around 10 or 10:30 a.m. and they were both pretty sleepy. Dave and I were doing better, but Dave ended up sleeping a bit in the afternoon. That seems like a holiday tradition!

Thane spots Rocket right away!
Braeden checks out his new kicksled.
Thane hides in protest to something said.
I love the eyes!
Thane examines a gift.
A smile emerges as he figures out what it is.
Complete glee down to his toes!
Braeden hunting behind the tree.

Thane's 5th Birthday

One of Thane's big requests for his birthday was balloons.


Every time he got one, he wanted one more!


He took to jumping on the couch


We went for a small gluten-free Rocket cake.


I like this picture of him peeking through a box.


He had fun with the piñata!


Thane flying a shuttle around.

In the end, it probably was for the best to just have a party at home with the four of us and Misty -- she got a treat bag with jerky in it, so she was pretty happy. It still feels somehow off to me, but he got what he wanted and seemed very pleased. It was certainly easier than having a big shindig, and he didn't meltdown once.

I've had some of those wistful moments thinking that he is already five. My baby is FIVE! I think back to the baby who was born earlier than I planned, didn't want to grow, slept and fussed . . . all the puke, the rashes, constant running nose, and never having a solid poop until he was gluten-free. The temper tantrums where he would throw himself backward and smash his head.

The toddler who would learn a new word and then lose another, and how it angered him so much when we tried to push him to speak. Now he speaks pretty well and even sings louder than his classmates. I love his little stories and his little voice. Every child deserves a voice and I am so glad he found his. He has made me laugh and smile so many times. I remember worrying he'd never really speak, and now I can't imagine what it would be like if he didn't.

The boy who never blew raspberries, never gave kisses, never said mama until he was almost three, and now he can do all of those things . . . and even chooses to do them. He is such a little lovey. He greets his teachers with hugs and he is just so sweet. I still worry some about his future, but for the most part I am so impressed with him and how far he has come. He is so determined and strong for such a small little guy. A lot of these things haven't come easily to him, but he's made it happen. He's such a treasure.

Happy 5th Birthday, Thane! My little lovey!

Santa at Preschool

It has been crazy busy around here – probably everyone else, too!

Let me start my catching up by showing Thane’s visit with Santa today. Santa Claus visited his preschool today. The children sang for him and Thane was too cute. He sings at the top of his lungs. It’s charming in a goofy kind of way, and it makes everyone smile. He was in the front row too, which was a bit of a surprise to me.

I wasn’t sure if I should go as I haven’t been feeling well this week and I knew I couldn’t stand through kids singing and visiting Santa. Dave was kind of enough to talk to teachers and make sure they reserved a chair for me.


Both of the older classes were in the studio for the party, so it looked like 20 kids, perhaps more. Thane was the second one to go see Santa. He cheerfully sat on Santa’s lap. He said he has been good this year and asked for a ball (and people think I am kidding when I say just about any boy is happy to get a ball, or several, as a gift). He was given a present there, a book. All the kids brought in a wrapped book to be handed out as presents for the kids – I thought that was a great idea.


As soon as Thane looked up, he saw me. He had to point me out to Santa, who waved and Thane was entranced by the bells on his wrist.



He got his book, ran to hug me, unwrap it, and immediately ask if he could go home. That’s Thane – when he’s done his part, he’s done with it all. I suggested he sit, so he sat down and read his book through. Then he went up in between kids to thank Santa, which I think Santa thought was cute.


But then Thane came back and again asked to go home. I was starting to feel two things – the seat of the old chair underneath my big butt starting to crack, probably because I had to perch on it in a strange way, and that Thane was behaving differently from other kids. The other children would go back and rejoin their group, but Thane was really feeling that I was there and it was time to go. Thane went to talk to Santa a third time and I heard him suggest in a very jovial way that Thane should allow other children a turn.

I looked at the treat table and realized there was nothing there he could have if I dared stay perched on that chair, and he asked four times to go home. He looked disheveled and very tired, and it sounded as if he was cranky in the classroom before the party. I asked if it was okay to just take him, and was told it was.

One of the teachers was very sweet – they all are, really, but this one really goes out of her way for me without making me feel like the problem I feel like I am. She got Thaney’s bag from the other building and brought them to the car. I told her that I broke the chair she reserved for me and she didn’t miss a beat, she was very sweet about it. I asked if she could please remove it before someone actually got hurt on it. Sigh. Preschool’s just don’t tend to have furniture built for very large people. I’m just glad I got to tell her and that she was nice about it.

So I have some mixed feelings about the day and the visit to school. It is clear to me that Thane thinks of me as his ticket home, so he doesn’t really want me to be there for another reason. I was really stressed about going because I just haven’t been well this week, but I didn’t want to miss him seeing Santa. In a weird way, I feel like I handled it okay, even if it was one of those events that I dread. A friend of mine actually shattered a chair recently and I was so impressed with her for just thinking it was hilarious. He was thrilled to see me there and to share his book with me, but I feel like I cut his party short. He did come home and have an upset tummy, though, so I am sure it is better that he didn’t stay in the same room with all those cookies and such.

I made up cards for the teachers and gave them each a beaded bookmark as Thane likes to help me with those. It feels like rather little in comparison to what these teachers do for and with Thane, but there were also seven of them to give gifts to today!