OT and it IS a small world

FYI: OT can stand for Occupational Therapy or Occupational Therapist.

I took T to a local large rehabilitation/therapy clinic in our new city today for an OT evaluation. This is the first step in getting him set up with weekly OT sessions. OT is an important part of the whole equation of therapies for him; his OT will help him with his auditory processing challenges (eventually getting back on track with Theraputic Listening – see earlier blog post), sensory issues, motor skills (like writing ) and with basic/everyday skills like buttoning, snapping, brushing his teeth, etc.

I was really pleased with the OT we met today. The SLP (Speech & Language Pathologist) from his new elementary school recommended this particular therapist because they had worked together at this large clinic before she took the elementary school job. Anyway, the OT and I seemed to click, mostly because she demonstrated to me that she was an old pro with autistic kiddos. She wanted to know more about his diet and the other biomedical interventions we were doing, and knew enough to ask “Is he alternating between Nystatin & Diflucan?” Wow. She knew about the Specific Carbohydrate Diet. She’s worked with kids who have done the SonRise program, Floortime, and the PLAY project, as well as Verbal Behavior. She likes them all, and uses different techniques from each in her approach. What a relief, truly. I felt like she knew at least as much about autism specifically as I did and we were already speaking the same language. Can you hear me exhaling? Whew.

So then we started talking about the town that we moved from, and she said her sister had lived there – and worked at the university. “Oh?” I said. “What department?” “Higher Ed”, she said, and I about flipped. “My husband is ABD in Higher Ed there. Who is your sister???” Well, when I heard the response, I dropped my jaw and said “Um, yeah – I know her. Rob knows her, and she was one of my Pampered Chef customers when I was a consultant a few years ago!!!”

What are the chances of that? All together now: “It’s a small world after all, it’s a small world after all, it’s a small world after all, it’s a small, small world.”

Goat yogurt

So the cow's milk yogurt was a digestive disaster. We quit after three days of giving him - get this - only 1/8 or 1/4 tsp/day. That's IT. I'll spare the gross details, but his diaper had enough evidence to tell me that cow's milk yogurt was NOT agreeing with him.

Goat's milk yogurt next, and yes, it is still homemade. Firmented (aka cooked) for 24 hours to get lots of good bacteria going. That is the whole point of this: get good bacteria in the digestive system, replenishing what he doesn't have, to help with absorption of nutrients from the food he eats.

The first attempts at making yogurt, especially the very first time, were so nerve-racking that I nearly had a nervous breakdown. Heat the milk, but ONLY to 180-185 degrees and if it goes over then you've KILLED it. Oh, by the way, the milk should be raw milk. (That's super easy to find - NOT. We'd need to buy a share of a goat from a farm nearby, and I ain't doin' that until I know it works for him.) Then let the milk, which has not gone above 185 degrees, cool to between 65 & 70. Then add non-dairy yogurt starter, cook at 105-110 degrees (again, don't go above 110 or you'll KILL it) for 24 hours. Yep, 24 hours. Thank God my mother gave me her yogurt maker so I don't have to come up with some twisted way of keeping this fragile stuff at the precise correct temp for that long. Refrigerate for 8 hours. Then (no, we're not done yet) I have to drain the stuff because it's so liquidy. That takes another 8 hours. By the time this process is done, it really is a gorgeous and tasty plain yogurt, but this is nuts.

I'm nuts too, but I'll do anything if it might help him.

We are on our second batch of goat yogurt, and the BMs are getting less and less, well, loose. He's actually starting to eat it on his own now too. Good sign. Stay tuned for continued updates.

Tooth Fairy

T lost his first tooth today! It had been loose for at least a month, but today it was finally just hanging my a thread. I admit to helping it out a bit! Once it was free in his mouth, he tried to chew it - but I retrieved it for the tooth fairy pillow tonight. He was really happy to see his tooth in my hand! He smiled and jumped a little bit, and I gave him a big hug. What a cool moment.

We've been preparing him for this for a long time - ever since we noticed that the tooth was loose. We've been telling him what amounts to a "social story" - these are little stories that explain a social situation to a child who doesn't understand typical social situations. (We have social stories for going to the grocery, using the toilet, and we wrote one for our move, too.) It amounted to something like this:

Your tooth feels loose. This is okay. This is what your baby teeth will do. Your baby teeth are the ones you have in your mouth now. One by one, they will all get loose and fall out, and that is okay. New, big boy teeth will grow in where the baby tooth was, and they'll be your big boy teeth, just like Mommy's and Daddy's.

Ultimately, the best thing to do is print each sentence on a separate piece of paper and put a simple picture illustrating the sentence on that page. You create a book this way, and that becomes the social story.

So now the question is this: do we play up the tooth fairy deal, or would that be too confusing? I mean, people with autism take things quite literally, and telling him that there is a tooth fairy when there really isn't one is a tough call. We have the same issue with Santa. Well, what we've decided to do is tell the story about the tooth fairy and Santa, tell him that it is indeed a STORY so that there isn't some major trauma later about Mom & Dad telling him to believe something that isn't true. I guess this is an issue for most kids, but it seems particularly challenging when these kids are so literal in their understanding that it may be tough to separate fact from fiction.

Anyway, it's been a big day for our little guy...who is getting bigger all the time. I'm so proud of him!

Requests

The really super news is that T can actually ask me to come outside and play with him! It really is so incredibly cute and it melts my heart each time. He'll say approach me, look me in the eye, and say "Let's go outside" or "trampoline", and looks so pleased with himself when I follow him outside. He'll continue to make sure I'm with him until we get to the trampoline, at which point we both get on and jump. Great fun.

The thing that just makes my heart ache is when he approaches me JUST as I am about to sit down to eat! He's done this to me at least twice now, and it just kills me to have to say "I'll come soon, but Mommy needs to eat now." I mean, each time it's been when I've been starving and working hard getting breakfast or dinner and am just really needing to sit down for a few minutes. At least tonight, he didn't have a meltdown when I said he needed to wait - he just layed down on the floor (sign of frustration and protest), kept asking me to go out, but was at least was not too anxious. The minute I was done with my last bite, he was up again, looked me in the eye again and said "trampoline." He had to have been watching my every bite!

He's brilliant.

Don't go a-changing the dinner routine

One of the stereotypes of people with autism is that they are very rigid in their schedules and that routines are a big source of comfort. This is true for T to some extent, but most of the time he's a pretty easy-going guy. But yesterday I inadvertantly threw him a curve ball, and I learned my lesson!

We had a lovely afternoon shopping at a local mall - new to us both, so there was lots to explore. He's usually "on edge" (as I describe it) in situations like this: pretty stable, but very active with lots of wandering, galloping, vocalizing & flapping of hands. I try not to test him or thwart him too much in these situations. We can have a very nice time if I follow his lead and gently direct him when necessary. I'm used to this and really, I don't even see other people staring anymore. Most of the time, people get that he's different and are really nice about it, and that is lovely. I've found this to be especially true in our new city.

So after about 2 hours of meandering - and he was great, stayed with me or at least nearby - we decided it was time for daddy to meet us at Fancy-ish Chain Restaurant. Rob packed his dinner at home (what a gem of a guy) and we were to get a table. In normal, everyday circumstances for typical folks, this is not a big deal. I just didn't think about the fact that we'd be sitting down at a restaurant table without his dinner immediately available.

We sat down, and T reached for the backpack. Immediately, I knew this could be cause for trouble. Nope, I don't have your dinner. Daddy is bringing it. So T gets agitated and leans further over to get backpack. I show him there is no dinner in there. Daddy is bringing it. Oh geez, he's escalating. T is surely thinking "We're at a restaurant, and when we do that, Mommy always has the blue lunchbox with my dinner...only this time, she doesn't! That's FRUSTRATING and I'm confused! Why won't she give me my food???" and the crying and screaming start. Nothing to do but take him out and let him scream it out outside of Fancy-ish Chain Restaurant. Thankfully, within about 2 minutes, Daddy saves the day by arriving. Hooray Daddy! So, with his face all splotchy from crying but with renewed calm, we go back into the restaurant - and all is perfect for the rest of the dinner. All is well because he now has his dinner in the appropriate manner.

Lesson for Mommy: don't go a-changing the restaurant routine! I got it.

Night-night, Norma

Today I spoke with a friend on the phone who has valiently fought stage 4 breast cancer for nearly 4 years. Over time, the cancer had spread to her bones and her liver, and I learned today that it now is apparent that her fight will soon be over. She has been T's craniosacral therapist while we lived in Small College Town, and as many therapists do, ended up helping all of us and had become very much an integral part of our lives. She even took voice lessons from me, so the relationship was mutually helpful and beneficial. She is one of T's favorite people, and he mentions her often, quite out of the blue.

As I spoke with her today and thanked her for being in our lives and for everything she had done for us, she weakly said "Now, don't you ever say goodbye to me - just say goodnight." I did - and added "Till we meet again", and promised to call again soon. When I was off the phone, I told T that I was just talking with Norma. He looked at me, smiled, and said "Night-night, Norma."

So, night-night, Norma. And if this is indeed your time, may you be in the arms of the angels.

Look where I found him

He's always been fascinated by the clothes drier (it spins clothes, vibrates, has many buttons to push...) but yesterday, they became one. Good thing it's a sturdy machine! (And it's a good thing the On button is outside and above, where he can't reach it!)