What she's doing at 4+ years

I'm writing this in early 2004. The last few years have been traumatic for both of us and I've slacked off on keeping the web sites up to date. This will be somewhat of a summary of what I recall.

As I mentioned before, she's proven to have a sensitivity to certain proteins, specifically gluten and casein. It's been a real challenge, feeding her properly without giving her foods that contain wheat, oats, rye, barley, and milk products. The theory seems to be that the incomplete breakdown dumps opioids into the blood, which cause behaviour and sleeping problems.

That means she can't have her two favorite foods, mac&cheese and pizza. It also means we have to be particularly careful when we go out to eat. For example, you'd think that french fries would be pretty safe, right? Oh, no. It turns out that there are two problems.

  1. Fries are often fried in oil used for other things. For example, breaded products. The cross-contamination appears to be enough.
  2. Fries are usually shipped frozen to the restaurants. Some companies coat them in flour to keep them from sticking together. Blanche and I have become experts at spotting such fries a mile away. (They have a kind of crunchy exterior.)

But Blanche discovered a miracle called Serenade. It's an enzyme complex that breaks down gluten, casein, and lactose. It's in the form of a powder in a gelatin capsule. Heat breaks it down, so we have to add it to cold or warm foods, we can't cook it into the food. Generally we give it to her mixed into her juice, with meals. It's somewhat expensive, and because it's all natural, it's not something that can be prescribed and therefore is not covered under any health plans.

We don't care. It's wonderful. We can feed Mariel anything she wants and not worry about it.

Blanche managed to make an acceptable pizza substitute before Serenade, so Mariel has been able to eat pizza. But mac&cheese turned out to be impossible to create without using real cheese.

So the first night we tried the Serenade she had normal pizza, and she loved it. But the second night we had real fun, and I'm still kicking myself for not breaking out the camcorder.

The second night she had mac&cheese for the first time in over a year, and she loved it! She would pick up a macaroni individually, laugh, and then eat it, over and over again. It was so delightful to watch.

It seems that her system maintains certain low levels of the proteins despite our attempts at keeping them out of her diet. Or perhaps other proteins give her similar problems to a lesser degree. But once we started her on the Serenade, her behaviour improved yet again.

We call it Magic, and the juice we mix with Serenade is Magic Juice. If you'd stayed up past 11 pm with this girl every night, often past midnight, sometimes past 1 am, and once past 3 am, you'd call it Magic too.

After a few years it seems that her system has largely adjusted; she can eat normal foods without any problems that we've noticed. We did recently run into a problem with a "tall vanilla cream frappiccino" at Starbucks. It turns out the drink is very heavily laden with casein, having extra casein added as an ingredient in addition to the casein normally present in the cream used in the drink. The result overcame her acquired resistence and we had to give her a dose. The Serenade was enough to offset the casein, though.

We don't normally feed her the Serenade; it's handier that way, so we're grateful that she's adjusted. But it's here if we need it, and having to feed her Magic Juice sure beats the alternative.

In the meantime, Mariel has been diagnosed with PDD-NOS, as I've said. The medical community keeps changing things; they just call it Autism Spectrum Disorder now, I think, and we usually just call it Autism.

In Mariel's case, though, she's pretty high-functioning. Mind you, she's now had years of therapy. She currently has a TSS and a behavioural therapist seeing her every week.

I won't go through my own or Blanche's fights with stress-related depression, at least not now. Suffice to say that we've both seen at least glimpses of sanity from the wrong side, and we've managed to pull back from the brink. Our marriage is still going strong despite some rough spots, and despite the fact that many marriages founder upon the rocks of an autistic child.

Mariel took two years of kindergarten and is currently in first grade. She takes half a day with the mainstream kids with an adult helper, and then the second half she attends a special class. She's doing very well; many of her skills match or exceed those of her peers, her learning disability notwithstanding.

We try to keep her in school over the summer for continuity. One summer she was in a class with other autistic children; rather than helping, she regressed remarkably, and even began imitating classic autistic behaviour that hitherto she had mostly not exhibited (e.g. flapping). We've been determined to keep her with mainstream children ever since.

And how many other autistic children would benefit from such exposure? It seems efficient to bring them all together and attempt therapy on them as a group. But what happens when the only behaviour models they have are each other?

I suspect that Mariel isn't the only person who could benefit from a certain amount of mainstreaming.

Thanks to Erdenheim and the Springfied township school district for providing this special program.

At a recent IEP meeting, Blanche was told that Mariel might actually qualify as "gifted." This isn't as much of a surprise as it might seem; her big sister is in a gifted program now, and Mariel has shown consistently that she's very clever and intelligent. That intelligence shows very much as she applies it as part of her efforts to overcome the limitations her autism imposes.

There's no doubt Mariel is a special little girl. We don't know what the future holds for her, but we have great hopes.

And now I believe I shall commit any further comments to the LiveJournal blog page I've created for her. One of the advantages of the blog is that both Blanche and I can contribute, and we don't need any special system or software to do so. The same goes for her pictures; I've moved them all to the gallery I set up for the family.

See you there.