
The new school year is in its 3rd week for Louis and 2nd for Giac.
Louis lucked into an older, mellower teacher than he had last year, as did his buddy Cassidy who he's now in class with for the 3rd year in a row. (I say lucked but really I had his 1st grade teacher and the child psychologist he saw briefly last year work on getting this done.) The new teacher is easy on conduct (A's everyday this year whereas last year he was often "pulling tickets") and homework (short assignments not more than twice a week his year whereas last year it was long ones everyday but Friday). So, he is feeling better about school, which in turn makes me feel better.
Giac is in a public pre-k4 program at Truman Montessori. It's a "reverse mainstream" class with a teacher, 2 assistants, and 12 kids (5 of whom are special ed and 7 who are regular ed). The first day had me in total meltdown. Despite hours and days of tests to get Giac the special education classification "Other Health Impaired" and hours and days of meetings to get his "Individualized Education Program" developed to meet his special needs, on day 1, in short, they seemed to have missed the memo on his feeding needs and asthma.
They were unprepared to provide the needed feeding support. Immediately after our arrival, he went to the cafeteria for breakfast with the assistants and I stayed in the classroom for orientation with the teacher. When he returned and I asked the assistant how he did, she said fine. "So, he ate everything?" I asked. No, she said, there wasn't enough time. I responded that of course 20 minutes was not long enough, he routinely takes twice that long. There was a blank stare followed by a "I'll have to see what we can work out...."
They handled his asthma equally impressively. He was mid-flare that morning, so I asked that he a) stay in at second recess (limiting his exposure to environmental allergy triggers), b) be given a nebulizer treatment during second recess to tame his flare, and c) not wait in the gym (unairconditioned but for giant wall-mounted exhaust fans blowing in outside air at high volume) around carpool drop off/pick up like the other kids (limiting his exposure to environmental allergy triggers), nor should his 3x/week adaptive PE class be taught in that space.
I exited the school through the exhaust fan wind tunnel gym and sobbed to my car and home where I made Andre meet me to hear what a terrible mother I felt like for putting him in this situation, for my own benefit of course (so Andre and I could more easily balance work). Then I went for a recovery swim to regain enough composure to work. And then...at 2 p.m., the teacher called me to say that Giac spent half the day eating and, while she was confident that she could meet his educational needs, she wasn't sure she could meet his health needs. This time anger replaces the tears. How could they have sold me this bill of goods?! He couldn't be accommodated in a
special ed classroom??? Where were we supposed to go from there??? The teacher said that she and the OT felt it would be best if we met asap to come up with a feeding plan.
Adding injury to insult, when I picked him up at the end of the day. They had failed to warm his food from home as requested resulting in his not eating it all bc the texture of brown rice when cold is harder to chew/swallow. And, far worse, the school nurse had decided he didn't need his neb and so didn't give it. Consequently, he came home with a rattle/wheeze worse that when I left him and bad enough that I kept him home the next day to get him back to baseline.
I spent all of Tuesday contacting the powers that be: nursing supervisor, disability rights advocate, and pediatrician to get the Day 1 errors corrected, as well as getting a space held at his old private school in case the public school placement fell through. Most f all, I quickly adapted to the possibility of things not going as planned, of another year of twisting ourselves into pretzels to keep work and Giac together.
On Wednesday, everyone hopped to. When I pulled up at the car rider drop off, the teacher was there waiting: Did I have the new orders from the doctor about when to give neb treatments? She called a few hours later to set a time for the meeting, now to also include the special ed director, school principal and nurse supervisor. That day he ate everything and asthma went fine. Thursday's meeting was reassuring.
All of them seemed genuinely committed to meeting his needs. Most meaningful to me was my and the teacher's sharing of our complementary fears. She feared unintentionally harming him for lack of understanding/knowledge abt his needs/time to address given the competing demand of the other children. I feared they wouldn't take good care of my baby. The self-imposed pressure of making this transition without losing weight so that we would meet our goal of taking his tube out in October as planned doesn't help, of course. I see solid support this year as critical to his successful transition to a regular ed classroom at his brother's school next year, which is
really important to him and me. The feeding tube is only one step (albeit a huge one) in this direction.
Anyway, since that big bad start, he has done great - eating and drinking everything almost everyday. Yesterday he worried me bc he was hard to wake, refused to eat breakfast, complained of a headache, cried when dropped at school... I feared regressing. Indeed, his appetite was down all day, but today he was back on his game. So, I just had to trust that he can weather the blips. It's my challenge probably more than his. His big motivator is a $150 Lego Star Wars set that I have promised to get for him when he has earned 100 "chicken bucks." He gets 1 buck for each meal (including glass of milk) that he completes. So far, in less than 3 weeks, he has garnered 27! I had better save my pennies! I expect he will have it before Halloween.
Keep your fingers crossed for us -- or me at least.