Healing Journey: August 2010
From the trenches of our Son-Rise bubble, here are the highlights shared with friends and family during August 2010, our fourth month into the program.
01. Giving SCD a Try
During the few months after diagnosing Joaquin, I have resisted all the special diets and biomedical approaches collective wisdom recommends for autistic kids. Joaquin does not show signs of GI problems, but recently I decided to try SCD, the Specific Carbohydrate Diet, just in case that his intestinal flora is in fact out of balance. It’s a good nutritious diet and a lot of work, and it’s making me cook and bake more than I’ve ever had in my previous 30 something years. The food is delicious though, and probably the most powerful thing is: No artificial ingredients, processed food, or refined sugar. I figured it could only help!
05. The Mystery of His Mind
Numbers. We’re really into numbers. Repetitive numbers that I have delighted in writing for him for hours and days. This has been true Son-Rise joining and I have loved it, and it so shows because he cannot wait to get us in the room in the mornings and throughout the day.
He gives me a piece of chalk or a crayon and tells me to write a specific number for him. Then he gives me another chalk or crayon and asks me to write another number (many times the same). I’m no longer worrying about how to turn this ism into an interactive game. I just join with all my enthusiasm as a way to show him how much I love him and enjoy playing the things he wants to play. This is the “bonding through acceptance” piece of the program. We’re just building the bridge between us; he’ll let me know when he’s ready to attempt to cross it over.
14. A New Milestone
Feels like it… Since we played the numbers game that pushed him so much, he’s now acting both: very exclusive (he created new intense isms), but also very “with us” when he’s with us. The eye contact is amazing!… When he interacts it feels like “more” than before (don’t know exactly why). It sounds like it’s possibly a good thing. Isming is his way of taking care of himself, particularly if all this new level of interaction has challenged him and used a lot of his energy.
Kind of pissed reading my monthly email babycenter newsletter. Perhaps I should unsubscribe and stop hearing about neurotypical milestones. Normally the updates don’t crush me, but this one is talking about how elaborate pretend play is supposed to be getting.
12:42 pm. Good Lord! 12:30 and still in my PJs feeding this hungry tiburon (tr: shark). Two surprise #2 packages in his diaper—one explosive—so cleaning, plus laundry, plus one more banana with honey, and then cake!… And now it’s time to cook lunch… I really need to take a shower
8:55 pm. Was starting to feel unhappy thinking of how I’d love to be able to have a normal day, like the one you’d have if your child wasn’t autistic and you didn’t have to worry about doing therapy, and you could eat delicious cookies without worrying about his fictitious yeast… And then I asked myself “Well, why can’t I have that day?”… So I didn’t go in the romper room, and I baked a batch from a new SCD cookie recipe, and I had FOUR of those cookies.
9:02 pm. Am I the only person whose attitude swings back and forth like a pendulum?… I have a block of great days, and then suddenly the energy starts fading for no apparent reason. I mean, why can’t I just STAY there when I get high?
I feel much better today to go in the romper room. The love-meter for our lives and my amazing “math geek” is growing. Don’t really know why the needle dropped. Perhaps I just needed a cookie :)
21. Ready for Volunteers
Playroom cameras are finally live! Recording software is ready! We’re finally set up for Son-Rise volunteers thanks to a great guy who helped us through the whole process although he wasn’t an expert at it. The guy is SO NICE, that even Joaquin kissed him goodbye. People: That’s the proof of fire… If an autistic child trusts you, you truly have a great heart.
25. Ya Casi (tr: Almost Time)
Joaquin in the romper room, chanting “ya casi” patiently (but not happily) waiting for me to start playing.
31. New Developments
Last week was particularly great in terms of interaction and connection with Kiki. It all started with him playing with these boxes, for the first time not obsessing about them being arranged by size. I used to dread whenever he asked for them because they always brought abundant tears when they were not arranged fast enough, and this morning I could not believe my eyes when I saw him playing with them randomly.
Kiki accidentally turned on his old musical table and the love for it came back all over again. Months earlier we had turned it off in our rampage to eliminate all electronic toys from his environment. To my surprise, he enjoyed it but didn’t obsess or ism with it. He just loves the songs, and now he shares his excitement with me. So cool!…Today I taught him how to turn it on and off. You know, because now he actually lets me teach him stuff. Yay!
Lately he acts mischievous and he enjoys it. That little smile and intentional look at you seconds before performing acts he knows are not my favorite, like climbing that grill.