2010 Update

Nate is now 4-and-a-half years old, and as of his latest appointment with his DAN! doctor, in December 2009, we now consider him officially recovered! Even his skeptical-of-alternative-treatments neurologist admitted back in March that, if they were to redo the CARS test on him, “there is a high likelihood he would not place on the autism spectrum at all.”

Sometimes I take for granted how far Nate has come. Here’s a glimpse:

Then (2.5 years old, before the diet and most other interventions)

Now (4.5 years old)

Nonverbal, just a few signs (“more,” “all done,” “please”) Extremely verbal up to and beyond peer level. Neurologist, who says she can just “hear” autism when a child with autism speaks–something in the inflection, the stilted meter, the way the child speaks, proclaimed she can’t hear it in Nate. She used the words “best I’ve ever heard” about Nate’s language.
Meltdown or tantrum if made to stop a desired activity Much more go with the flow and “roll with the punches.” Still enjoys routine and being “in charge” and self-directing activities, but no rigid adherence. Can be reasoned with.
If he wanted something, he would just go and wait at the object instead of communicating (e.g., if he wanted something to drink, he would go stand by the refrigerator) When Nate wants something he can’t get himself, he comes and asks (e.g., “Hi Mama, may I please have some juice? I’ll get the cup.”)
Up several times crying at night; awake early (5:00 to 6:00) each morning Bed time at 8:00 p.m. with night waking very rare (perhaps once a week). Sleeps until at least 5:30 a.m. but stays in bed until 6:00 or later.
Desire to play with peers but no understanding of how to play with them (e.g., he liked to play chase, so he would go up to a peer, stare at him/her, then run away hoping he/she would chase him) Nate has no problem interacting with peers, and his way of playing is indistinguishable as “different.” While he doesn’t ask many questions about others or wonder about their feelings often, he is polite and loves to play.
Diet consisted of quesadillas, pizza, yogurt, cheese, chicken nuggets, fries, bananas, waffles, and baby food fruits—basically, LOTS of gluten, casein, and soy. Diet is not extremely varied, but it is free of all gluten, casein, and soy. A typical week for Nate includes pancakes for breakfast (GFCFSF mix made with extra nutritious goodies mixed in), banana, dry cereal, fruit leathers, hamburger patty, GFCFSF bread, peanut butter, bacon, blueberries, and small bites of whatever GFCFSF thing I make for dinner.

 

We are so thankful for Nate’s success. We believe the following interventions have been most successful, with God’s help.

  • The GFCFSF diet. Whenever we wondered whether this difficult-to-follow diet was really working, Nate would accidentally get gluten (or casein or soy) somehow, like accidentally being given food with an unknown ingredient or being given the wrong snack in class at church. And then we would pay the price in his behavior for a day or two: prolonged meltdowns over the slightest thing (a parent saying he can have juice in just a minute), uncharacteristic whining, crying.
  • Consistency between therapy and home. We started using the same language and prompts the therapists did with Nate, requiring he communicate to the best of his ability instead of just giving in to his tantrums or meltdowns.
  • mB12 shots. While these didn’t provide a huge jump in skills for Nate like they have for others, we did notice they help him accept changes in routine better. They make it easier for him to go with the flow, to order his world. (We noticed this when we did a challenge/re-challenge where we stopped the shots for several weeks, then reintroduced them and watched for changes.)
  • The guidance of our DAN! doctor, who helped put together the right combination of supplements and vitamins for Nate.

Nate will enter kindergarten in Fall 2010, and we anticipate he’ll be recommended for full inclusion in a general education setting. We are so proud and excited. 🙂