Thursday, May 31, 2007

Fricatives in Holland

I’m moody today . . . I’ll admit that right up front.

I was reading an editorial in the local newspaper related to the Emily Perl Kingsley Holland piece (about how having a special needs kid is like going to Holland when you planned to go to Italy – beautiful, but not what you planned). The editorial said that one of the worst things for parents was the way other people look at them and their child with disabilities.

Before that I was talking to a friend about some concerns with our current speech therapy and feeling like I need to take on more responsibility for helping Thane . . . but it seems like such a foreign language with things like “voiceless fricatives” which sound rather like cursing underneath one’s breath. Funny how I wouldn’t mind doing some of that right about now!

Prior to that phone call, we had an afternoon home visit for developmental therapy where we discussed social stories. I wrote a little book about Thane and his allergies to try to help other children understand that Thane can’t eat many – most – of the foods they eat and illustrated it with photos of Thane. I was told at the time that it was a great social story. But today I learned rules of writing social stories and by that person’s rules, mine was awful. The formula sounds so foreign to me and I now understand why it took the therapist a week or two to write this story. And now I feel like I need to go searching out guidelines, probably another book to buy and never really get to read . . .

Unless I go to that conference on using the picture exchange system in Bangor for two days in July – that I was only told about after I would have to pay the higher late registration fee -- and sit in a hotel room and read all night. I am just too antisocial to do something like that right now. And where would I stash the kids?

So how does this all relate to the article? Well, people seem to think it is fine to stare at you like you’ve raised your child in a barn, or even comment on him being a “bad pirate” . . . and it really feels like people think that the parent is at fault. I don’t think that is just my own insecurity because the editorial mentions other parents who feel the same way, and I read it all the time on the various listservs I’m on.

But does anyone really get it? First, I am dealing with a little person who has so many obstacles in front of him that it can hurt to think about it. He has an immune deficiency. He needs a special diet. Some of his motor planning needs to be learned because it isn’t wired properly. He processes a light touch as pain and a firm touch as a tickle. It’s easy to see why lots of us make no sense to him because it is kind of hard to put myself in his place and I am an adult with pretty good empathy skills.

Now I am supposed to be speech therapist (I hate seeing that word as my mind often separates it into “the rapist” – how’s that for awful?!?), occupational therapist, developmental therapist, learn all of these different languages of vexing vestibular input and frigging fricatives . . . this afternoon I felt like I was tired and I realized I really didn’t have a physical right to be. I slept well for two nights in a row. So did Thane. It has been months since that has happened so I am more rested than usual. It’s the mental strain of having too much to learn, process, implement, etc.

Plus I seem to take really lousy care of myself. For the second day in a row I actually remembered to take my insulin with me when I left the house, only to forget to take it while I was out anyway. I tried to move back to oral diabetes medication but I felt dizzy, nauseas and started getting edema in my feet . . . I wanted to do this so I could move off insulin and the scenario of forgetting it would be a thing of the past. Nope. I have a lousy track record with meds, but I wasn’t expecting trouble as I have taken that one before.

I got “permission” from the doctor to switch the way I take one medication to split the pill, but when I do I forget half of it, so that’s not working out either. I used to be able to set a timer on my watch and remind myself to take stuff – now I am likely to just swat the alarm and go back to whatever I was doing.

I wonder what the point of all these special therapists and such is if most of it is really up to me anyway. So far I feel like I am the one who explained how to calm him down. I am the one who thought of a way to entice him to try to draw purposefully. I’m the one who figured out that he responds well to puppets speaking to him. I figured out how to get him dressed without a battle. Dave figured out how to brush his teeth without the battle. Is all the effort taking him places just sapping energy that could be better expended one-on-one Thane and I? Probably not, but it does sure seem like it would be easier for me!

To be fair, I do get good information from the therapists, but it still just feels like a lot on my shoulders and some days I would really prefer to just stay home because I really have no energy left by the time we get home.

Obviously this adorable face is worth all the effort.

Thursday, May 24, 2007


“Beautiful” is one of Thane’s favorite words at the moment. Somehow it is especially cute coming from him. He also likes to say a really breathy “Wow!” when he likes something.

Last night we played for a bit with shapes, but his attention turned to some Playmobil animals I had ordered for him. Watching him play with things is a lot of fun. I put together a vase with flowers and he announced that it was beautiful, and then took it over to the elephant and put it down for the elephant to eat!

My mind isn’t good at linear progression, so I have to insert a comment that Braeden and one of his friends stopped in the field at school to pick flowers for me. I’m glad I have cups stashed in the van! They looked really sweet gathering the blooms, and it was a very nice gesture.

Back to Thane . . . I had my head stuck in some instructions as he started playing with the people and animals. When I looked up, I couldn’t help but laugh at his setup. In the house he had placed some furniture and a family of hedgehogs. Outside within a fence were the people. To me, it looked like he corralled the humans and the hedgehogs were apparently of higher importance. In reality, it probably wasn’t meant to be funny or even slightly odd. He likes to play in our back yard, which is fenced in. So the people were probably playing and safe. I suppose I may have laughed harder if it was a family of flying squirrels inside!

That reminds me of one of the other things I meant to post a few days ago. I have been busy trying to back up my photos again because I believe my computer is on it’s way out – I don’t think I have owned one this long before, but then again there haven’t been as many changes in the technology recently. We thought the squirrels might be back the other day. There was a funky scratchy sound upstairs. Dave went upstairs to check it out and started laughing his backside off – laughing so hard he couldn’t really speak clearly. Apparently the dog decided to stick her head in the trash can upstairs. We have a white bullet can in the bathroom. Her head got stuck in the lid. She came racing downstairs looking like she was wearing a big medical collar – and she gave me that “I was naughty and I was caught” looks. Thane didn’t laugh. He was worried about his dog! He immediately saved her while saying, “There! That’s better! You okay, Misty?” He was so fast that I didn’t get a chance to take a picture.

Sunday, May 13, 2007


Now I am experimenting with sound . . . the link below should take you to an MP3 of "Glaze" -- Braeden's second attempt at musical composition. I think it is pretty good for a recently turned 9-year-old, though I admit total bias because he's my kid!

Braeden's "Glaze"

I wish I had known his first one was going to premier at the first school concert in December, but I didn't and I wasn't prepared. This time, I was smarter.

Saturday, May 12, 2007

Elephant next door

After playing tag with Kimberly, I thought I would finally getting around to posting this blog entry that is from events on May 5. I was driving Braeden to gymnastics and we passed a neighbor's farm. Thane was feeling chatty.

"Look, a horse!"



"Where's the elephant?"

You should have heard Braeden laugh!!!

Then I took Thane to the playground for awhile while Braeden had gymnastics. There is a plastic stone wall that you can climb. Underneath is supposed to be a fossil on the wall of a cave . . . Thane is more of a climber, so he never went under there before.
Saturday he went under, and said:

"It's a MONSTER!!!!!!!!"

Backing off with startled look on his face.

"Hello, Monster " looks at it for a minute, backs away further and says, "Goodbye, Monster!"

I didn't think he would go near that wall again, but he climbed up it several more times, but never went back under. Leave it to Thane to be scared of a monster and just say hello to it.

Fast forward to this Saturday and he didn't want to spend much time in the playground. Just a visit to each of the slides.

"Chinese Freeze Tag"

Ack! I’ve been tagged!!! Kimberly must think I have 10 interesting things to say about myself but I am not sure she is correct on that one. I’m supposed to say 10 things about myself, tag 10 people, and then they are supposed to tag another 10 (without repeating previously tagged folks!). We’ll see how this goes.

1. I started blogging only about 6 months ago because I tend to be too lazy to write things down . . . but I am not always good at blogging either! I tried really hard last month and have completely slacked off.

2. I adore penguins . . . and my older son looked a bit like one last night in black dress pants, white dress shirt, and a black tie for his concert yesterday. If I can figure it out, I am going to try to post his original piano composition up here. I wouldn’t hold your breath for that, though!

3. Shopping is fun to me . . . but only if I don’t have to pay full price. The weird thing is that I am not cheap or anything like that, I buy more than I should, but it has to be some kind of deal.

4. My little video of Thane is actually the first slideshow/montage of any sort that I have put together. I can’t tell you how many times I crashed my computer before I figured things out. And I ended up using three different programs to produce it and get it small enough to upload.

5. I went to boarding school at Loomis Chaffee in Connecticut. My 25th reunion is in June, but we won’t be going. I think I have only gone back once since I graduated and I am no longer in touch with anyone from high school.

6. It has actually been 11 years since I started my website and a bunch of support groups for overweight women.

7. Braeden is the result of my 10th pregnancy and Thane from my 13th – I didn’t even test until 11 weeks with Thane because I just didn’t want to know if I was going to miscarry again.

8. I spent half my summers out an island with just my immediate family – people I no longer speak to at all.

9. I love the ocean, but I rarely swim in because it is so cold up here in Maine. I feel Braeden is a true Mainer because he will go in, no problem.

10. My mother’s day wish this year is to be able to use the bathroom when I wake up without company. Thane’s new script includes “tight-rope walking” from a stool to a potty and filling a cup with water, and repeating it over and over again, complete with feigned difficulty stepping up onto the potty.

Let me see . . . who shall I tag (and who will actually look here and see they were tagged?) . . .

Alicia (she needs to post something!!!) at Jettison Junk
Liz at One Silly Mama
Dori at The Ups and Downs of Our Life
Anna and Lori

I'll stick to 5 like Kimberly did -- for the same reason!