(Note: There are no cute pictures today because they are upstairs and I am downstairs with Nate. When Nate gets to go upstairs to my office, he makes the printer spit out 99 blank xerox copies. Every. Single. Time. For the sake of the printer and the trees, photos will not make an appearance today.)
Life has a way of throwing us curveballs. Every time we think we’re on it, we’re not quite there. This week, I had quite a productive week planned to be capped off with my husband taking Friday off to attend Nate’s Planning and Placement Team meeting (PPT)–more on that in a minute. But, instead, we found ourselves at the emergency room in the wee hours of Monday morning with our Tater, who was having trouble breathing due to the croup. Lemme tell ya – the croup means business. It comes on out of nowhere and is a scary thing. After a mega-dose of steroids, Nate’s throat reopened and we had our normal boy on Tuesday. He went to school and even did two sessions of therapy. But Wednesday? Nate was not his normal self and, on Thursday morning, we found ourselves back at the ER with breathing problems worse than the first time around. He got another mega dose of steroids but now has a drippy faucet of a nose and a barky cough, all of which he didn’t have on Tuesday. Amazingly enough, this is Nate’s first cough and drippy nose of his life. The cough still freaks his freak; he’s not quite sure what’s happening. And he’s quite tired of me wiping his nose. But that’s my job: Mama can’t let Tater run around with a dribble of snot.
Even though the PPT has been upstaged, it’s weighed heavily on my mind all week. It’s a rather important meeting — our first with the special education department in the public school system, which Nate will transfer into on his third birthday this May. The way I understand it, Chad and I, along with our team leader Lisa, will meet with the head of special education for the district, a special ed teacher, a school psychologist, and a speech pathologist to discuss Nate’s current therapy, Nate’s current and future needs, and what kind of placement he may get in school–a mixed classroom (1/3 autistic kids, 1/3 speech delay, 1/3 no issues) or an all-autistic class. Together, we will create his IEP (Individualized Education Plan) based on Nate’s strengths and weaknesses, a list which I started to compile from his therapists over the past two weeks. And then observations–at home, at home during therapy, at school, at school during therapy, and/or at the public school itself–will be scheduled. Right before Nate turns three, we gather again and find out what kinds of therapy, how much of that therapy, and what kind of classroom he’ll be in. You read right: right before he turns three.
While I’m sure that the school system will serve him well, it’s exhausting to realize that we’re starting all over again. We are blessed to have received a very early diagnosis for Nate (18 months) and, because of that, we’ve got an awesome machine right now. Everyone’s on the bus and knows what direction the bus is going in; no one is running alongside or behind the bus. And, better yet, no one is at the bus stop waiting to be picked up. When we start with new therapists and therapies only take place at school (no more home-based help for us), it’s a whole new bus and there’s going to be a learning curve for all of us.
Moreover, we won’t know what types of therapies, the length of the therapies each day, and what kind of classroom/schooling he will receive until a few days before he turns three. Why is this important? Well, Nate turns three in May, the end of the school year. If he does not get placed in an extended school year (ESY — acronym page to be updated shortly, you can be sure of that), which means he will go to school in June and July, then we essentially are stranded with no help until September. So we go from driving sixty miles an hour to zero and Chad and I will be left scrambling to find a private therapy service to help bridge the gap. We are optimistic that he will receive an ESY (we have the data to prove he needs it) but there’s still the chance that he won’t–and we won’t find out until very late in the game. That freaks my freak.
I’ll really explain what all of this means once we have the meeting, which is later on today. Thankfully, Nate is healthy enough to go to school so that one of us doesn’t have to stay home with him to miss the PPT. And Chad and I are suiting up–can’t hurt, might help. Though Nate’s therapists are optimistic about how this will go, I have yet to hear a single positive PPT experience from parents of kids on the spectrum. So, here’s hoping that we can produce the first glowing “this was totally awesome” PPT moment of the year.