(Caution: disorganized thoughts ahead)
We are about seven days into the 2014-2015 school year, and so far so…good? I don’t know, not really. I should probably back up a bit.
Corrigan was supposed to begin first grade this school year, however in our second IEP meeting, just a week before school began, Mark and I sat down with his team and we decided to have him repeat Kindergarten instead. The idea of repeating Kindergarten was never offered in the first IEP meeting, last May, but after I attended a seminar on Special Needs Inclusion, we decided that this is what we wanted for Corrigan. Inclusion, that is. His Principal had already been floating the idea of full-inclusion for Corrigan, last Spring, but I was hesitant for several reasons. I won’t get into all of them here, this blog isn’t a dumping ground for every one of Corrigan’s unique issues, but my concerns were (and are) valid but after the seminar I realized that despite those unique issues he still deserved the chance to be educated in an environment best suited for him, and when I started scratching out some of the reasons I was against inclusion- because a few of those reasons were more about other people than Corrigan- the list of positives absolutely outweighed the negative.
However, full-inclusion in first grade was asking too much of my little boy. He had spent three years in a self-contained, special education setting, with only a handful of children in his class (and a large adult-to-student ratio) and while he was hitting several academic markers, socially/behaviorally he had a lot still to learn. By repeating Kindergarten, we are giving him a second chance at one of the most crucial years in a child’s educational life. Being fully included in Kindergarten allows Corrigan the chance to model appropriate peer behavior, learn how to move through the building in large groups, practice sitting and participating in a more traditional, strict setting and gives him more opportunities to succeed.
Mark and I do not feel as if he “failed” Kindergarten. He did not. We are not “holding him back” from anything. We consider this year as Kindergarten 2.0. We truly believe that this year could be monumental for Corrigan.
There. All caught up on that now, Kindergarten 2.0, six days in.
So why the ambivalent, weird tone of my first paragraph? Well, things have been hard. My little boy is struggling. This has been an enormous change for him. As a child with a very rigid sense of routine, he has always walked into the school building, turned a certain direction, saw a certain teacher, in a certain classroom and that was the way things were, for three straight years. I worried and tossed and turned a lot about this, all summer long. While it was surely a blessing having the same wonderful teacher for three years, I knew transitioning to a new teacher, in a new class, with new classmates and new routines was going to be startling for him. And it has been.
Again, part of me wants to share details and part of me wants to protect his story, not shine a spotlight on negatives, but I know that a lot of UCD families read here. *sigh* Here is where the disorganized thoughts come in. So share? Not share? Why? Well, many have followed along since their own child was diagnosed, and they look at Corrigan’s story to see if maybe this is how their little one’s story will go. They see his battles, and his triumphs and it prepares them, in a small way. Not that their own child’s story will be even close to Corrigan’s story. Not at all, I guess it just kind of puts the possibility out there. What I mean is, if their child too a pretty big smack from sky-high ammonia as a newborn, well- I share so that a new family reading along can say “Okay, maybe I should be prepared for some learning difficulties. Or some speech issues. Or maybe a g-tube. Or a need for Special Ed”. Because I have found that either the doctors will scare you to death with dire predictions, or they tell you very little and use phrases like “we just don’t know how this will all play out” and guess what? They don’t. Because Corrigan isn’t Tommy and Tommy isn’t Amy and Amy isn’t Jackson. Each of their children have their own story, their own journey, but having an idea of what could lie ahead…well, that is part of why I type here. That and to archive all of this. And sometimes, my heart just isn’t in it. Sometimes, I type out all of the thoughts and it no longer makes me feel better. I am only doing it for you and not for me, sometimes. Because I am going to be honest, this all stinks.
So I am not going to break down Corrigan’s day as I understand it has been happening. He is struggling, in all of the ways that you might assume he would struggle. We still haven’t found a way to give this smart little boy a “voice”. Or he hasn’t found a way to click with the options given to him, I don’t know. This summer, he surprised me by figuring out that the yellow “Y” button on the xBox controller brought up a “search” option and that he could then use the controller and toggle to actually TYPE OUT MESSAGES TO ME. Yet, he isn’t using his iPad in a similar way yet in school. The training on the iPad and speech app moves at a glacier pace when he only gets to see the Speech therapist a time or two a week. He needs more. He is so smart with technology, there is nothing he can’t swipe, tap or pinch on a touch-screen, but the iPad program has not “clicked” yet.
The words and abilities are in there, they are tucked inside of his brain, I see it every single day. His vocabulary is enormous, I wouldn’t be shocked if he could read more than 300 words, easily. He is an excellent speller. If I cannot understand a pronunciation of a word he is using, he does not get angry, he simply spells it for me. His mostly-accurate spellings, or close-approximations missing only a consonant because he spells phonetically, nearly always cue me into what he is trying to say. IT IS ALL IN THERE, but he cannot get it out, at least not fluidly. At least not yet.
I feel like I have walked around these last two school weeks with my heart on my sleeve. My legs are heavy and my head is weary, I can only imagine how Corrigan must feel each day. He has started to panic in the mornings. He does well while waiting outside for the bus, but when it arrives he runs. We have to grab him and hold him tightly. He doesn’t cry, or scream, but instead turtles-up into a ball. Or if his Daddy picks him up, he curls into his neck. He will hang onto the bus door and refuse to let go. The bus aide is unable to move him to his seat, for fears of hurting him. He has been so upset each morning, that Mark and I walk into the house sweaty and nearly in tears because he is obviously so distressed. At home, I often have to use a sharp tone of voice with him, to get him to cooperate, but since school has begun, he gets such a sad, resigned look in his eyes when I do. He complies, but he looks at me like, “Not you too?” and it kills me.
So I have softened my tone. I know that I cannot let him get away with things at home, just because he has hard days at school, my entire thing is about trying to make sure that what I do at home compliments the actions and behavioral plan at school, so that he has complete consistency throughout his entire day, but right now he needs home to be his sanctuary. He needs to be able to come home and meltdown because one of his Apple Jacks fell onto the floor. And instead of snapping at him, to stop the tantrum, instead I let him vent for a bit. I give him more time. More space. More patience.
When I see his bus pull up, and he makes that little corner from his seat to the steps to get off, my heart literally opens a mile-wide for him. I know what the day has asked of him. I know what it asked of his teacher, leading a huge class of 25 little kids. I know what it has asked of his Aide, who is new to Corrigan and navigating his quirks and emotions. I know what it has asked of his classmates, who have to deal with outbursts and distractions and a kid who gets to “take a walk” when things get hard, but they do not. I know what it has asked of the nurse, who has to deal with an emotional kid that doesn’t want to leave recess early to get hooked up for his tube feeding. I know what it asks of every person trying to do their best to help him navigate his day. My heart is wide-open for all of them.
But all of this makes me emotional. It makes me unreliable. It makes me doubt my decisions. It makes me dread the sound of my ring tone, it might as well be the IRS, the way my chest gets hot and my heart starts pounding, knowing it could be the school. AGAIN. And I want those calls. I want those written little notes in a take-home folder, I need to know about his day, rough or not. It makes me angry, all over again, just when I thought I was past being pissed at Citrullinemia. You know? Just when I thought I had given this all to God and forgiven those who missed what was happening to his brain, I find myself hanging up from school and raging at the injustice of it all. None of this is easy to watch him go through. He has spent his life struggling. Struggling to eat, struggling to speak, struggling against viruses and germs that make him tremendously sick and endanger his brain, struggling to show love, struggling to trust others, struggling against the sounds and textures of the world. His entire life has been about struggling, and school just magnifies all of that.
and, my God, this is just the beginning.