Susan's Blog

Sunday, February 21, 2010

Tired But Smiling

All parents — and especially autism parents — feel at times that there is just not enough of them to go around. When Nat was younger, in his many different therapy years, scheduling the boys was something that could make my stomach freeze. I have all these memories, probably strands of one braided in with wisps of another, of having regular appointments for Nat precisely at a time when I would have to pick up Benj or he was still napping, and Max was somewhere (in elementary and middle school Max did things like the school’s performing arts stuff, soccer, piano), too. Also, Nat always has gone to school programs far away (in other towns), and so the bus would drop him off at around 3:30. Most appointments, however, only went until 4, and so there would be that teeth-gnashing moment where you feared that the long-awaited slot with that therapist or doctor would slip away because of traffic. Or you’d have to pay for your no-show. Many times I have taken Ben out of school early so that I could drive out to Nat’s school and pick him up and drive back to the appointment, and have Max go to a friend’s house or wait for me in the school library. Although we are in walking distance of their school, there is one busy street that connects our neighborhood to the school neighborhood, and no crossing guard.

Choreography of three boys’ lives was my metier back then as a younger mother. I was the Twyla Tharp of shlep. But in the last four or five years, things have softened up a bit because a) the two younger boys are older and more self-sufficient and can walk places or take the T; b) Max and Ben’s activities are more individualized and therefore not on any program or instructor or team schedule; c) Nat no longer sees a neuropsychologist, an OT, a PT, or an SLP. His activities are all on the weekends, and they are all social rather than therapeutic (and so they are more flexible). His lack of OT, PT, and speech are because we have not been able to find one who treats adults.

I am very proud of the shift from the therapeutic to the social/athletic. This change has made a tremendous difference in Nat and our family’s overall gestalt. Ironically, once we stopped pursuing therapies and treatments to make Nat less autistic, and got him into sports and social groups of mixed levels of ability, Nat became less autistic — or, more accurately, less encumbered by communication, social, and behavioral issues. And no, Nat has not de-auticized; he is just calmer than he used to be and so he is more able to enjoy activities. I honestly do not know what made the difference: a combo of certain meds; an excellent school program; an easing up of our miserable demands that he change into something he’s not; growth.

We feel and are more “normative,” as Nat’s psychiatrist calls it (we still need to see him every three months). Dr. M is all about appearing like typical peers or Normal (that is another version of the N-word, a word to be avoided at all cost. We say “supposedly normal,” or “typically developing” around here). (Dr. M would rather see Nat drinking Coke than anything else because it is what other guys do. Dr. M has his opinions and they are not always like mine but I know a good specialist when I see one now and no one’s perfect. Don’t throw the doctor out with the bath. I know what Dr. M means. He wants Nat to be included in the life of the world as much as possible. Inclusion, open doors, possibility, and potential in every possible way. I get it, and for the most part, I agree. I’m not willing to contort Nat for that purpose, and I’m certainly never going to give that young man Coke, of all things! Nat loves orange soda, anyway.)

So Ned has been out of town this weekend, and I have been visited by the Schedule Woes of Boyhood Past. I managed to do three things just for me (alone) in the last two days: go out for an hour and buy a pair of jeans; have a friend over for coffee so that I wouldn’t have to leave anyone here; and go to my two-hour dance class. All other hours I’ve been either here at the boys’ beck and call, with only Twilight Princess here to talk to, waiting for the next event I have to get someone to on time.

Yesterday I picked up Nat after my bellydance class, so I was in the car for about an hour and a half. Max had to get to Hannah’s, so luckily Hannah’s mom picked him up. I managed then to fit in the walk to Kukoo’s Cafe with Nat, before my friend arrived for a brief coffee. Meanwhile Ben was gainfully occupied with his own mind and creativity, designing a new film, using Flash X, his own sequel to Zelda’s Twilight Princess. The title letters dissolve beautifully and the music he chose is — moody and a propos.

Later on I had to drop off Nat so he could go to dinner theater with his gang, then I took B for a bite to eat at a local dive, then I picked up Max in Boston, then home for a bit, then Max went to a party, then I waited for Nat to be done. Finally, at 11:30, neither Max nor Nat were home and I found myself in the odd position of being a mom waiting up for her two teenage + sons. Tick tock yawn yawn. I fell asleep on the couch in my boots. At 12:30 the phone rings and at last Nat is ready to be picked up. Still no Max. I call him, trying not to sound like an annoyed mother but I was an annoyed mother. Rush to get Nat because I am SO tired and I get back and still no Max. Call again and he sheepishly admits to only just now walking out the door. He has no key so I have to wait up for him.

At one a.m. Max comes home. I settle into bed at last and I can’t fall asleep. I’m tired, but in a good way.


Sounds like you were quite busy! I admit, we are still in the trenches with scheduling woes. Trying to find a "good day" for another OT & SLP round of therapy was harder than I thought. Nick has school until 2:30-takes until 3:30 to come home, four days a week he has ABA starting around 4-4:30,two days a week we now have soccer practice for Michael which starts at 6pm, and the weekends are ours. The only day we had was Wednesday after school! I know people who do therapy on the weekends too,but that is just not us. Weekends are for us-to do what other families do. And to recharge our batteries for the next week ahead!

— added by Amy on Sunday, February 21, 2010 at 12:40 pm

We too are among the over scheduled…2 kids with ASD means double the therapy! But I liked what you said about therapeutic vs. social. It has made me think about what's the most important things for them individually.
They are back at school today after a week of vacation- so I am with you..tired but smiling 🙂

— added by jenn on Monday, February 22, 2010 at 11:39 am

Love that line, "I was the Twyla Tharp of shlep." I am in the middle of that right now – three kids, ages 5, 9 and 12. I choreograph schedules in my sleep.

— added by Susan on Tuesday, February 23, 2010 at 11:28 am

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