GSCF Diet

Well, I decided to try "the diet" aka the gluten free, casein free diet.  I don't know it it will make a difference, but it's worth a try.  Tyoma has never really drank milk and is fussy over yogurt so that part is no big deal. Getting rid of wheat, though, that will be a challenge.

I called Dr. Dobbins who siad to avoid too restrictive a diet (don't worry about gluten if he's not having serious digestive problems) and shared her experience that diets don't always work for AS.  She did hook us up with resources for nutrtion and suggested a calcium supplement with vitamin D.

I wrote to Kindercare asking them not to give milk, but they spazzed out and requested a doctor's note.  I asked if they would withold milk as a "preference" instead.  All I had to do was write a note and bring in rice milk:

SUBJECT: Rice Milk/water for Artyom (Tyoma) Degtiarev

Dear KinderCare Staff,

Our family is modifying our son’s diet to facilitate his speech therapy. Please help us limit his exposure to dairy by replacing his milk with either rice milk (which we will provide) or water. We understand that you will not be eliminating dairy for him and that he will still eat yogurt, cheese and other dairy products according to your menu. By helping us with this voluntary intervention, you will be promoting Tyoma’s successful attainment of developmental goals. Thank you for you consideration and time.

Sincerely,

Behavioral assesment at kindercare

say what

SLP Surprise

I started the day hustling Tyoma off to preschool, while Tennisfiend lounged in bed. Afterwards, the two of us took off for breakfast at our favorite coffee place, J Beaner’s. We ordered the apple pancakes, which turned out to incomparably delicious! The yeast raised pancakes, similar to crumpets in texture, were baked on top of luscious cinnamon apples. Beautiful to look at, delicately spiced with cinnamon (too much cinnamon=Big Red chewing gum) and best of all, theses pancakes were not overly sweet. Yummy! Tennisfiend smoozed me, asking about my dream kitchen and I rambled on for most of the meal. New paint, new dining set, hutch for Tyoma’s arts & crafts. Breakfast was so nice; we plan to bring Tyoma sometime.

We did a bit of browsing after, Tennisfiend searched for cross country skis and I hunted for school paste. Do you remember that sticky, sweetish smelling stuff, perfect for macaroni pictures? We plan to make Moses proud! My day took a turn when our speech therapist (Karen) called wanting to know if she could come over today instead of this coming Monday. I felt totally put out, but I said yes. I like to mentally prepare myself, type up notes for her and make the house sparkle (even more). But, why not get it over?

So, naptime was spent writing my report (I do this for Tyoma, so we have a good idea of his progress, especially since he has some developmental issues). Anyway, the session went fine for about ten minutes. I really believed we would have a productive session, since last time was such a success, but then the toys kept coming out of her bag, and she kept pressing him to talk. Tyoma shut down and turned into the hyper-monster. Session over. Well, not really over. We talked and talked about autism. Too much.

These sessions need to be all about Tyoma and not some diagnosis that has not been confirmed! I need to remember this, too. I warned her that she was over stimulating him, but she seemed not to hear. He is wonderful with us and dreadful with her.

Fortunately, Tennisfiend came home at the peak of the situation. The three of us tried a game at her suggestion, which made everything worse. Our SLP said, “If only he would sit still and engage for 30 seconds!” Ack!!! My hubby took psycho baby to the side of the room and gave him his alphabet. In less than five minutes he was calm and talking. In six minutes, he was spelling words. She about died watching him spell “open,” “six” and “star,” chatting all the while.  I could tell that she felt bad, but I was vindicated.  I told her, “The moment Tyoma ran off into the other room, you lost him.” Sigh.

For the twentieth time, I seriously debated firing our SLP and replacing her with the SLP I met last week (Cheri). Tennisfiend suggested that we be calm and give her another chance—she sincerely cares about our son and does try hard.  In the meantime, we have a session (not speech therapy) scheduled for December with the other SLP, if she connects, we have a new therapist. If not, hmmmm…

Until then, I will take over the sessions, and squeeze the appropriate therapy from Karen, especially when it looks like Tyoma is getting alienated. Tennisfiend thinks our SLP doesn’t seem to understand what she’s doing wrong and won’t change unless I teach her another way. This makes sense, the session I “took over” last time was fantastic; I guess expecting her to remember and implement my (brilliant! J) approach was too much.

So, now I am the self-appointed ambassador for my son and his SLP. It’s awkward, because I should be looking to her for the tools to reach and teach my boy. Nevertheless, I’m up to it. This probably won’t be the first time I “work with the system,” so I’m going to take it as an enormous learning opportunity. I secretly hope that a miracle will occur with Cheri, it would take a load off.

Speech Therapy

November 14, 2008

Tyoma’s Progress

Tyoma has been feeling well for the past few weeks, although he has been coping with a change of staff at KinderCare. On Oct 31, one of Tyoma’s teacher’s (his favorite!) was fired from her position. Although a staff member has filled her position, a few other temporary workers have rotated through the classroom—it was a chaotic week. He is adjusting to the situation, but I am uncertain if they have “settled” on a new girl. His meltdowns have practically vanished and are greatly reduced in intensity when they occur. 

• Tyoma communicates some internal states to us. He now consistently indicates when he is cold—I’d say almost 100%. We’ve gotten some “eat-eat-eats” out of him when he’s at the table, although I’m relying on schedules to keep him fed/hydrated.
• I have totally changed my focus regarding his speech—it’s now geared towards sharing and having conversations. This really works! He finishes sentences from his favorite books and songs and will answer some simple questions. I let him initiate conversations when we look at books or play. It’s generally a one or two “word” commentary.
• He’s been spelling words like exit, start, six, and open with his alphabet letters for about a week. He can sight read from some of his simpler books.
• His pronunciation of words remains about the same, with modest improvements, and nothing seems to improve it but time and repetition.
• Tyoma is using the word “where” appropriately.
• We started a gluten free/casein free diet Oct 31. We’ve noticed some improvements (25%) with his speech/play, but it could be incidental.
• He’s spending less time “organizing” the alphabet/numbers and playing alone. He’ll play alone for 10-15 minutes during the day before seeking me out, usually to show me a letter/number/book. He still has 30-45 of imposed quiet time in the evening, but will knock on his door to cue companionship.

Friday, November 7^th, I observed Tyoma in the playground for about 15 minutes. He spent most of the time running around by himself, or jogging by his peers without noticing them. Miss Ronda stated that this was fairly typical of him (70% time), although he does have “good” days when he runs along with his peers.

This Monday (10^th), I had my first official parent/teacher conference at KinderCare. Although I speak to the staff at least once a week, it was good to have some focused time without distractions. On the top of the list of my concerns was Tyoma’s social behavior. During our meeting, she said Tyoma has a “friendship vibe going on” with a boy named Vinny. Tyoma will run with him often and shows a preference to being next to him.

When asked about his participation, she mentioned that he does not like loud music or to play with musical instruments—he will leave the area when these activities take place.  This was a surprise to me since I have never noticed sound aversions at home, but in his defense, the music at daycare is thunderously loud. Miss Ronda also said that Tyoma does not seem to “get” painting. He goes through the motions but does not “engage” like his peers. I have noticed similar problems at and I have a plan to get him more involved.

Miss Ronda said that Tyoma has made great progress in sitting with his peers during snacks/meals. He is cooperative and will remain seated while eating. He also joins in circle time and “seems interested” in what is going on although he does not usually sing/talk/dance like his peers. Miss Ronda made one significant comment, “He is very compassionate.” She elaborated by saying that he notices when a classmate is crying or upset and that he seems concerned. He does do anything but watch intently until the situation is resolved.

Turkeys!!!

OMG!!! Blurry Turkeys!!!


Wildlife is awesome! While feeding Tyoma his late afternoon snack, movement in the backyard caught my eye. A flock of turkeys! Yay! Ten birds milled about the backyard. At first, I thought they were peacocks (go figure!), but on closer observation, they were way too goony. I dashed up the stairs and took some stills reminiscent of bigfoot footage. Yay, turkeys!!!

The first part of my day was taken up by a dental appointment. I dread the dentist, especially a new one, but this guy was really personable. He was one those guys who looks good with a shaved head and goatee--and he didn't even have a biker vibe! He looked so familiar to me, but I just couldn't place him. As I left the office, I realized he looked just like Terry O' Quinn from Lost. Not that I watch Lost. I remembered him from the Stepfather movies. Whoa, '80s flashback!

The rest of the day I felt wrung out, I stressed over the dentist appointment unnecessarily and was thus over-relieved and tired. Sure, I need to floss more often, I need a shield for tooth grinding and I only gagged three times out of  18 tooth x-rays. What was the worry? Probably the idea of being scrutinized by yet another medical person. Tyoma's docs and therapists are quite enough. Tomorrow Tennisfiend has a day off work, so we will do fun stuff. Yay!

Creepy Spider!

This is for you, ewbliette!!! Whilst surveying children's nursery rhymes I came across this:




Lordy, this made my skin crawl!!! It's not that the spider is creepy in a generic cartoony way, but rather that its motions are so uncannily realistic. The juxtapostion of genuine spider movement with huge bouncing, bulging eyes and chicklet teeth is too much! Like this goofy grinning devil is going to crawl right out of the computer and up my arm! Auugh! Somebody get a newspaper!!!

Target Verbs

Eat        Sleep        Shake     Touch     Sit

Read     Smile        Play        Draw      Crawl

Drink     Jump        Kick        Pet         Walk

Clap      Bounce     Brush      Hug        Tickle

Lick       Paint         Pull         Wiggle    Roll

Whisper Chew        Go          Run        Open

Peel      Fly           Write      Turn       Wave

Smell     Close        Cry         Lift         Bang

Spell

Target Nouns

Body

Nose     Eyes         Ears        Cheeks   Chin

Mouth    Teeth        Tongue   Feet       Hands

Fingers                 

Giraffe   Fingers      Tub        Crayon    Monkey       Clown

Bicycle   Penguin     Girl         Candy     Pizza   Table

Tractor  Dress        Toes       Merry Go Round Puzzle        Hippo

Vacuum Button      Boy        Ice cream Tree   

Motorcycle            Egg        Watermelon      Sweater     Woman

            Potty        Pajamas  Umbrella Carrots        Mouse

Tummy  Turtle       Sand       Glasses   Man    Tiger

Alligator Juice         Frog       Rollerskates       Hair  

Lion       Bird          Feet        Bib         Balloon        Apple

Truck    Blocks       Bowl       Boat       Elephant      Key

Doll       Horse       Stroller    Hand      Clock  Blanket

Drum     Bear         Swing     Hat         Hammer     

Train         Pig            Dog           Nose         Mouth           Shoes

Plane         Cow          Cat            Ear            Eyes             Bus

Ball           Bottle        Book         Cup           Car              Flower

Baby         Banana      Spoon        Fire truck   Teddy bear

Rabbit        Broom       Bulldozer    Comb        Slide             Shirt

Fish           Cookie       Bubbles      Duck         Brush           Phone

Wagon       Water        Tricycle      Pants         Squirrel         Legs

chair         Boots         Helicopter  Arm          Orange                      

These are the words that I have chosen to help Tyoma say.

Pinkeye!!!

What better way to spend a Sunday, than with a toddler who has pinkeye? Oh wait! Make sure you get pinkeye, too!

Yep, the wee one woke up with a bloodshot, crusty left eye. It looked mild enough, that I debated about making a big fuss with the doctor, but worry (naturally!) prevailed. Back in New Mexico, you could call an answering service and some nurse would phone in a prescription for you. Out here, folks is par-tic-ular, you gots to be SEEN!

So Tyoma skipped his nap and we spent the afternoon waiting with the other unfortunates at Nashua Pediatrics. I managed to keep him on my lap with much effort, I didn't want him to single handedly infect greater Nashua by smearing his fingers on every inviting surface. The Doctor saw him and prescribed two bottles of eye drops. She asked be if I'd every given a toddler eye drops before. Soberly, I replied, "No." She laughed, gave me a wise sidelong glance and commenced to give me a few strategies to get the drops in. Heh.

Well, I dropped off the prescription and did tomorrow's shopping (can't bring the infectious one out for 24 hours) and braced myself for the eye dropping ceremony. Tennisfiend held Tyoma as he screamed bloody murder and I tried to get the drops in his eyes. It was like trying to tattoo a cat. Good Lord!!! Such straining, struggling and shrieking--and that was just Tennisfiend yelling at me to "Put the drops in, already!" After four frustrating minutes, we traded places. I held Tyoma down and cursed at Tennisfiend while he tried to get the drops in. Success! My curses were obviously much more effective than his.

After all the excitement, my eyes itched. And so did Tennisfiend's. Thank you Doctor for giving us two bottles of eyedrops!

ETA: Pardon me for adding some pictures of the boys doing yard work together! I took these in the morning before I completely convinced myself that he had pinkeye.

In the bottom picture, Tyoma is so serious about clearing the yard of debris that he's pulling up handfulls of grass to add to the trash!

Speech Therapy

Well, another day has passed and again the speech therapist seems to think Tyoma’s autistic.  She sweetened it with a “But he would be clearly a very high functioning autistic”. 

Sad!

Poor Tyoma looks sadder and sadder as a video palys on Youtube! He's watching this: http://www.youtube.com/watch?v=2MdS3yQfRxI Whe he sees Grandma cry over her missing geese, his face droops. He'll even say "Sah" mournfully as it plays.