I'd rather have guinea worms than see Leo in this state, and have to wait it out.
Even so, as I wrote in a guest post for Laura Shumaker's SF Gate column last week, we don't stay home. We just don't. Leo likes to be on the move. It's harder for him, clearly, with the debilitating stims and the mood swings (and occasional inopportune pit stops), but he also loves adventuring -- it's one of the few things that seems to make him happy in this state. So we don't stay home.
We don't stay home.
|With Jennyalice and family at Muir Woods|
We don't stay home.
|At Bean Hollow's Pebble Beach, near Pescadero|
We don't stay home.
|At Pillar Point Harbor in Half Moon Bay, with Iz|
Okay, well, sometimes we stay home.
|Playing Poke Me! on the (new) iPad|
And it's not all worries and stims -- with Leo there are always heady jolts of wonderful. Three days ago, as we were practicing spelling and writing on his iPad, he sight read the word "cake" with no prompting, then tacked on "a" and "t" to the word "go" to spell goat. After I picked my jaw off the picnic table we were sitting at, I allowed myself to consider that the reading, it may really be happening. (Fingers crossed, toes too.)
Yesterday he ate cantaloupe, honeydew, pineapple, and strawberries (!?!?) -- another huge breakthrough for our food tolerance-challenged boy. Our whole family witnessed it, and got to share the joy of a boy putting his toe into unfamiliar culinary waters.
Today, on the way home from a truly glorious day at the beach with one of our favorite families, he came up with a call-and-repeat, ever changing acapella jazz riff, and kept it going for most of the ride home, eventually pulling our entire family into his music. I wish I'd recorded it; it was astounding. You would have been astounded.
June was not a balanced month for our boy (or his mother, it must be told). I'm hoping for a reasonably settled July. And more of that acapella jazz riffing, because damn, that was cool.
Sorry that you are both having to go through this...I also tapered off Zoloft and had a very hard time, including brain zapps and over all feeling of "why bother" and difficulty focusing to complete goals.It does get better and the most amazing thing was that I hadn't realized how emotionally dead I had been while on the drug until it was all out of my system . Zoloft should be called "the zombie maker" . When you detox and have to get used to not just ordinary sensations but normal for auts "hyper-sensitive" it can be really over whelming .ReplyDelete
Glad the distractions are helping a little.
We go through these extremely stimmy periods with Ash, without the reasoning of a medication withdrawal or anything like that. There are just times when between the stimming and the sensory-based blanking out, EVERYTHING drags out and just takes forever, even with constant cue-ing. One of the down-sides of him finally potty training is that it can take 45 minutes to get him through going to the bathroom...ReplyDelete
I can't tell you how much your comments mean, and help. Thank you.ReplyDelete
And I do understand that not all of what's going on with Leo may be meds-related, sigh. Wishing for easier functioning for all of our kids.
Thomas is really stimming a ton right now too. It broke my heart to watch Leo in the car because Thomas does the same thing. This week he has started touching the heels of his shoe after EVERY step as he walks. It's maddening. He is compelled to do it but it slows him down getting everywhere and he gets anxious about that. He also has to sit on every available surface in our front room in order to walk through it. He pauses at every chair, his scooter...even the cooler we keep forgetting to take out to the garage. He has to sit or huddle in each place and do a cycle of hand gestures and specific sounds before he can move to the next thing and start the cycle again. I have removed as many things as I can from the room, but he gets anxious when I try to put away anything else. It takes him fifteen minutes to navigate fifteen feet in our house. It makes me crazy and sad because I see him there and I know that he's so frustrated and stuck sometimes. Just kills me.ReplyDelete