Something refreshing that I have noticed about the Twitterverse and the Blogosphere, is the strong presence of other Special Needs Mamas. It makes me feel that in coming back, and being able to relate so closely to many of your stories, I’ve found my own personal Cheers.
I’ve blogged before about DS8 and his/our struggle with 22q11.2 Deletion Syndrome. From the summer of 2004 up until a year or so ago, DS8 was fed by G-tube. Knowing how to work a Kangaroo pump made learning how to use my smartphone this past summer seem almost, well, like child’s play.
We joined this special club after it was discovered that after multiple surgical interventions to repair a vascular ring, Tetralogy of Fallot with Pulmonary Atresia, and Pulmonary Stenosis, DS8 had lost the ability to swallow. And once the worst was over, so to speak, and his body recovered from the surgeries, he had zero interest in trying. There was no reason, physically, that he couldn’t take food by mouth and swallow it. Just no interest, whatsoever.
I argued against the tube placement. I thought more effort should have been made by the specialists to teach him how to eat again. In the brief period prior to what seemed like an endless cycle of surgeries, DS8 had been drinking from a baby bottle. (We won’t get into the medical mishandling of what was actually an allergy to penicillin and not an allergy to milk or soy proteins – that’s a blog post for another time.) But reality won out; DS8 weighed 12 pounds at 12 months of age. “Failure to thrive” – I hated that phrase, and still do.
So we learned how to use the feeding pump, and surprisingly it was not as gross or daunting as one might expect. It was just something we did, because it helped keep DS8 alive. We dealt with it all, including exploding MicKey buttons, without flinching. (And less than a year afterwards, in 2005, when DD was diagnosed with Type 1 Diabetes, doing the fingerpokes and injecting insulin similarly became something we do, because it keeps DD alive. Practicality overriding fear or discomfort, at least on the adults’ part.)
But you still worry, no matter how desensitized you think you are, especially when it comes time to send your special needs babies to school. The anxiety seemed to ramp up, at least for me, after DS8 graduated from the Special Ed. Systems program at his elementary school and was integrated into a Grade 2 classroom setting. Thankfully, we still had access to a nurse to assist with the tube feeds.
In the summer between Grades 2 and 3, DS8 began taking to the idea of eating by mouth, nothing fancy, no steaks or baked potatoes, but going from nothing to purées is still one helluva milestone to reach, especially for the boy who was not supposed to survive past his first birthday. We told him we would take him to Walt Disney World if he kept up his progress. Unfortunately, our travel budget has not yet caught up to DS8, but we’re still planning for it. (At 39, I haven’t been to Orlando yet myself.)
Anyway, in Grades 2 and 3, and now Grade 4, DS8 was assigned to an E.A. whose attitude has always struck me as being just a bit too “casual” for a casual employee, and DS8 learned to manipulate her rather quickly. Snack and lunch-time became something of a battleground, with him refusing to eat and with her accepting it and choosing not to help us in breaking him of that habit, despite notes going back and forth in his communication book between our family and the school. It all came to a head this week, when my parents were finding unopened food containers in his schoolbag, and once again we sent a note. Someone from the school phoned my father at work in protest of our protest, if you will.
So this is what I sent directly to the school principal by email, this morning:
Dear (Ms. X):
I understand that someone from (the school) contacted my father (…) yesterday regarding DS8’s lunch and snacks.
Without putting too fine a point on it, DS8 must be encouraged to eat everything that is sent to school with him. As I am sure you are aware, DS8 no longer receives his nutrition through tube feedings. While the change from liquid tube feedings to solids (purées) is excellent news all-round, the fact still remains that he is “failure to thrive,” and every calorie counts. My parents offered sensible solutions for making the meal times less of a burden, such as adding the fruit purée to the main meal. It shouldn’t matter how appetizing it looks to us, or how “time-consuming” it is for an adult to have to sit there with him – DS8 must eat. As for documenting his food intake, it takes no time at all to do it, and it’s been done ever since he started school. His paediatrician and dietician both require this information on an ongoing basis. Moreover, with winter coming, DS8 needs to maintain his weight, ideally gaining pounds, to help his compromised immune system fight off the colds and flu bugs that the rest of us seldom think twice about.
Should the E.A. who has been assigned to him not wish to spend the 10-15 minutes it would normally take to ensure that DS8 eats his puddings and his lunches, even going so far as to actually put spoon-to-lips, might I suggest asking his twin sister (DD) to help out? They can eat together with minimal disruption to their daily program.
As his mother, I am more than aware that DS8 can be difficult to handle, despite his usual sunny disposition. I completely understand the need for the E.A. to have some time to herself at lunch-hour. I also wish I could say that it’s not that big a deal if DS8 misses all or part of a meal, as one might presume with a “normal” child. But it is, and he can’t. Therefore, I would appreciate the school’s full cooperation with this matter.
If you have any further questions or concerns, please contact me.
Maybe I’m being a tad unreasonable, but I have been waiting for some sort of response over the last four hours, and so far? Nothing. Especially when it seemed to be such a matter of great importance yesterday.
I’d love to hear your thoughts, fellow Special Needs Mamas. You know where to find me.