Philip’s IEP review was Thursday at 8:00 am. I had been looking forward to meeting with his preschool team, talking about his growth over the last year and discussing the challenges ahead. I thought it would be a great opportunity for us to express concerns and share joys. I knew in my gut that we were in a different place than a year ago when Peter and I both cried, worried and generally sat dazed during the initial IEP meeting. I anticipated a better experience this year.
And then Philip threw up.
Not during the meeting. This was around 2:30 am after only a couple of hours of sleep. The sinus infection was causing thick mucus to drain, prompting Philip to cough, then to gag and, finally, to vomit.
This woke up Peter. Peter, who has not be sleeping well since we got the news of Philip’s lead poisoning. Peter, who is worried sick about Philip, about us, about the safety of our home. Peter, who is not a patient man and who does not trust others, especially not doctors and teachers. Peter, who flinched at each of Philip’s coughs, who cringed at the ragged breaths of his son who was trying to fall back asleep on the couch. Peter was now awake, sitting quietly, grimly at his desk.
I sat in the recliner, exhausted. In addition to a lack of slumber due to Philip’s erratic sleep schedule since he got sick, I have been battling my own coughs, sniffles and earache this whole time. Of course there has been no chance to take myself to the doctor, not with four trips to the pediatrician in the past month plus all of the extra diagnostic tests and appointments related to the lead.
I had been so hopeful just hours before. Philip seemed in such good spirits the evening before. He hadn’t coughed once during our walk, but by bedtime, a persistent snuffle-cough one-two punch thwarted his efforts to fall asleep.
After he threw up and once he stopped crying, Philip seemed to breathe a little easier. That was not the case for me and Peter. I briefly fell asleep in the chair, but Peter remained at his desk. He finally broke his silence around 6:00 am when I awoke once more.
“He’s not going to school today,” Peter stated. “He’s not going anywhere until he is well.”
That’s how it came to be that, once again, I was sitting at an IEP meeting crying, worrying and dazed. This time I was alone. Peter had stayed home with a now-sleeping Philip. He hadn’t wanted to come anyway.
“You don’t want me there,” he warned. He knew that his anger and frustration would explode as it had with me. After stating that he was keeping Philip home, he had unloaded. His impatience and distrust, combined with his fierce love for Philip, led him to demand that I find our son a new home, a new school and a new pediatrician.
I had silently nodded at each demand. I knew that neither of us was in any condition to discuss this calmly, yet I could tell that if I didn’t respond soon that he would only become angrier. I assured him that I would start looking for a new lead-free place to live. I told him I would check with some acquaintances about other doctors in the area familiar with autism. I wasn’t, however, ready to concede on the school.
“I know Philip has a long way to go,” I said. “But think about how hard it will be for him to go somewhere new. If you don’t think he is making progress quickly enough, maybe we can look at additional services rather than starting over.”
“Well, he can’t go anywhere until he stops being sick,” Peter retorted.
“I know,” I tried to soothe. “I’ll look into other options anyway.”
It was no wonder I buried my face in my hands, crying too hard to speak as I sat in the preschool’s conference room. I had thought I would be okay despite my stress-filled morning/week/month, but then I had to tell them that Philip was home sick. Again. Still. And then I had to tell them about the lead poisoning. I felt like I was going to throw up.
I was at the school for an hour and a half. When I returned, I calmly updated a still-brooding Peter over the meeting.
We had gone over all of the progress reports and then moved step by step through the new goals. The staff had been disappointed that Philip was out sick, not only because they too want him to be healthy, but since they had wanted to demonstrate a possible augmentative device for communication. A student in another class is using one, so the therapist had gotten permission from the other parent to include Philip in one of the therapy sessions. I guess the interaction between the two boys and their shared attention of the device was amazing to watch.
As I recalled what transpired in the meeting, it was Peter’s turn to nod silently.
“Is that it?” he asked when I finished my report.
“I think so,” I cautiously answered. “I have to go to work now.”
I went reluctantly. As the morning’s events swirled in my head, a ridiculous refrain popped into my head. I knew the source. Over the past few days, Philip had repeatedly pushed the button on one of his toys so that the songs would play again and again and again. This was the result.
To the tune of “Old MacDonald Had a Farm”:
Philip has a plan for school
And on this plan there are some goals
With a profile here
And a benchmark there
Motor goals, social goals, everywhere some speech goals
Philip has a plan for school
Philip does have a plan for school. Now we need a plan for the rest of his life.