Thursday, September 27, 2007

Jenny McCarthy

Jenny McCarthy has written a new book which tells the story of her son's autism and how she treated it - and recovered her son. She is an AWESOME new presence for the biomedical treatments for our kiddos. Below is a link - she was with Holly Robinson Peete and Dr. Jerry Karztinel on Larry King Live last night. By the way, Dr. Karztinel was one of the featured docs at the DAN conference this spring. I loved him - so kind, so genuine. AND...he was a mentor for our DAN doc who is treating T here in our new city.

I'm so glad to see the DAN/biomedical interventions getting more press. Okay, so the jury is out on whether or not its a success story for our boy. But it IS successful for thousands and thousands. Keep it up, Jenny.

Saturday, September 22, 2007

I love you

This morning, I went into T's room to get him up and to the bathroom before he soaked through his overnight diaper, as I do every morning. Thankfully, he is in a phase where he sleeps and sleeps in the mornings, so once a week on Saturdays, I am able to sleep in, too - for the first time in 6 years. Nice! But this does mean that occasionally the bed is wet, so I don't like to delay things too much.

So he was pretty groggy when I first went in. He hummed a little bit of a tune, which I recognized as the song I sing to him at night. He LOVES this song. So, I croaked out the song to him in my still groggy state. When I was done, he looked at me and said "I love you."

He wasn't singing it. I sing a song to him that starts off "I love you Lord Jesus, look down from the sky...", which he also loves. But he wasn't singing this time. I say "I love you" to him almost every night before he goes to bed, but he's never echoed it. He may have actually told me that he loves me this morning.

He may have actually told me that he loves me.

Autism - The Musical

No, I'm not kidding. This is the name of a new documentary that I went to see yesterday. I confess that my first reaction was that it was going to be some Simpsons-style or even worse South Park style comedy, and I rolled my eyes. But I read the reviews, and decided it would be worth it to go. I'm so glad I did. It was, admittedly, an emotional rollercoaster ride for me - laughing, sobbing, empathizing...but I am glad I went and I definately recommend it to anyone who is interested.

It follows the story of 5 autistic children and their parents as they take part in the Miracle Project, . We learn their life stories and their family struggles. It is honest, brutal at times, and mainly very positive about the abilities (and yes, challenges) these kids have.
Just one more way the word is getting out about our kiddos.

Thursday, September 20, 2007

Goat Yogurt Update

If you don’t want to read about poop, don’t read this post.

Okay. So the good news is that the goat yogurt does indeed seem to help T have normal, formed BMs for the first time in MONTHS. This is an incredible thing for him and for me – having to change soupy poopy Pull-Ups that smell terrible and get all over T and me and stink up the house & garage and give him diaper rash has been a 9 month nightmare. Every time I change a Pull Up that is full of diarrhea or soft-serve poop, I feel just awful that we’re subjecting him to this discomfort with this diet. This was supposed to heal an inflammed gut, but is it? Honestly, Rob & I are so ready to give up on this particular diet. But the goat yogurt firms up those stools, and plop, they drop right into the toilet without leaving much trace on the Pull Up. Hard to believe I’m writing this, but I’ve never seen such gorgeous poops as when he eats the goat yogurt.

Bad news. One time, only once, I added homemade raspberry jam to the creamy, smooth yogurt. Texture change. Seeds. Yucky. He took one bite, and it was over. Okay, so I threw that dish out and made a fresh serving with lovely, smooth strawberry jam. Too late. He would have nothing to do with it. Of course, I’m frantic to get him to eat it, so I’m insisting – being pleasant & upbeat – but not letting down because DAMMIT, the stuff give him gorgeous poops and I’ll do anything to keep that up. Nope. This goes on for a few days, with me nearly exploding with desperation to get him to eat, and him flatly refusing – keeping his lips tightly closed, turning his head away – then the showdown ensues. Now he won’t even have it on the table near him without screaming “NO YOGURT! NO BITE! NO NO!”

I want to cry & give up.

Sidebar: a year ago, he would not have been able to verbalize his intentions this clearly. Amazing. Diet? Verbal Behavior? Just normal development with aging?

So, plan B. I hide a mere ¼ tsp of yogurt in his walnut butter morning & night. He doesn’t seem to mind the taste, and remarkably, a grand total of ½ tsp each day does appear to be maintaining better poop consistency. Not gorgeous, but better.

I’m also putting the yogurt with the strawberry jam on the table next to his plate at breakfast & dinner. No expectations – just accept its presence on the table. So far, so good. Next step: have him just touch the spoon without melting down. Then pick up spoon. Put to lips. This will take some time. A month, perhaps, as our VB consultant predicted today.

And all the while, Rob & I are still poised & ready to give up on this dietary intervention and try something else. I get myself into such a “Can’t give up” hole, and Rob keeps me grounded by looking at all this as a researcher, which is what he is, after all.

The plot thickens. More when there is something to report.

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.”

Saturday, September 08, 2007

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.