Jake has just completed his first quarter of Kindergarten. Right now, he is sleeping in and I’m so thankful to have my little guy home with me for the two week break.
The first seven weeks of school have been hard. The IEP that was set back in May or June was woefully inadequate to address Jake’s auditory and sensory problems, especially within the frame of school. His special needs are not that obvious when he is by himself, but they overwhelm him when he is in a mix of 20 little bodies running around a classroom.
It has always been hard for me to explain what happens to Jake when his sensory and auditory systems aren’t functioning. The closest that I can get is tell you to imagine that you have had a couple of beers and you just got off a half hour Scrambler ride in the middle of Mardi Gras. Your world is full of noise, confusion, flashing lights, and your body is being pushed around by crowds of people. Then, a very sweet person comes up to you and asks you to solve an upper level math problem, but just as you reach for a pencil someone dumps cold water down your back. What would you feel like? Would you be able to calmly sit down in the middle of the street and solve the math problem or would you want to scream at everyone to shut up and leave you alone?
If you would be calm and sweet, then my hat is off to you. I’m also telling your mom that you are a liar! 🙂
Unfortunately, Jake hasn’t been handling himself very well. When he gets upset, his brain shuts down and his overwhelmed sensory system immediately seeks pressure of some kind. Pressure is the one thing that helps his body to immediately orient itself. To go back to the drunken Mardi Gras scenario, it would be as if in the middle of the chaos, a giant picked you up, gently squeezed you tight, and lifted you above the noise and confusion. Since the giant (me, usually) isn’t with Jake all the time, his body will seek that pressure by rolling on the floor, jumping up and down, or flailing around. The worst part of all of this is that when he gets overwhelmed and gets stressed out, the potential for him to hurt himself or another child is very high. Thankfully, neither he nor anyone else have gotten hurt beyond a “Hey! That hurt!” kind of thing, but a child hurting anyone for any reason is totally unacceptable.
All of this makes Jake sound like he is out of control and he really isn’t. Ninety percent of the time, Jake is fine. He is funny, sweet, he pays attention, he is learning, and he is doing well. He just got his first report card and he is getting above average marks. His ability to remember information is huge. He loves doing homework and even though staying focused is an issue, when I tell him it’s time to read or do his school work, he lights up.
So, basically, Jake is a smart kid with some disabilities that make a classroom environment difficult. His current IEP does not give him enough support or help in the classroom. So, where does this leave us?
The easy answer would be for the school to hire an aide to help in the classroom. However, since we live in an upper middle class area and the students test well, the school gets almost no funding from the state. There is no extra money to hire an aide.
Our entire hope is now rest on the emergency IEP meeting that we are having in a few weeks. Normally, IEPs are set once a year, but if it is needed, they can be re-written in the middle of the year. I am thankful that we are going to go back to the drawing board now that we understand what is happening in the classroom. Once the need for an aide is established, then another pool of money currently not in the school’s budget would become available and it would pay for an aide to work with Jake. Bottom line, Jake has to have someone with him. If somehow Jake’s needs are not deemed sufficient for an aide to be brought in, I will be attending school with him until his maturity level rises to meet his academic abilities.
Just before school let out, I had the Fall Parent-Teacher Conference with Jake’s teacher. There are not words sufficient to describe how much I adore that woman. She has been unfailingly kind to both Jake and myself, she is patient with all of the kids, never raises her voice, and is one of the best teachers I have ever seen in action. I have spent around 40 hours volunteering in the classroom so far, so I know both her and the other kids pretty well by now.
His teacher and I have both seen a worrying trend in the other kids in the classroom. While most of the kids genuinely like Jake (one of the little girls in his class wrote him a note that said, “Jacob, you are my BFFFFFFFFFFFFFFFFFFFFFFFFFFFFFF”), there are a stinky little handful who are hovering around the line of bullying. Jake can create quite the scene when he is upset and some of the other boys have been provoking him so that they can be entertained by the fallout. I saw one of the bigger boys in class run up to Jake with his fists in Jake’s face and pretended to hit him. When Jake started to flail and get away, the boy started to say that Jake hit him, but when he saw me watching, he looked a little scared and backed off. Another one threw a (thankfully soft) block at Jake during clean up, with a big grin on his face, and only said he was sorry when he saw that I was looking at him. I have seen boys crash into him, bump him, step on him, get in his way and push him. Jake’s teacher and I both see that when I am in the classroom, Jake is ten times calmer. What we aren’t sure is if he is calmer because he knows I am there to help him or if he is calmer because the other kids aren’t bugging him as much. The kids are pretty smart about waiting until the teacher’s back is turned before irritating each other. An aide in the classroom will not only help Jake academically and provide that deep pressure when he gets frustrated, but will also serve as another set of eyes on the kids.
If you think that the mothers of these children are any better, you have another thing coming. I wrote about that in The Line in the Sandbox, which I have since passworded. If you want the password to it, you only have to ask. The post itself struck a chord with so many other moms that it was shared by people that I don’t know personally. It wouldn’t take long for it to circle back to the mothers I wrote about, so I shut it down.
If you know Jake at all, you are probably feeling terrible for him and for me. Let me reassure you that Jake has many people who adore him, love him, and are rooting for him. He has at least five solid friends at school all of whom stick up for him and tolerate him. One of the little girls has some problems of her own and the other kids pick on her, too. She told the teacher that she loves Jake and he is her friend because he is always nice to her. The teacher and all of our therapists are totally on our side, have told me how sick they are of the other parents being horrible to all of us, and will do whatever it takes to get him the help he needs.
This whole situation has been harder for me than almost anything we have faced so far with Jake. I have cried, worried, and prayed for all of this more than I thought possible. I know that even though our train got derailed a little, that we are still basically on the right track with him.
I still think that good things will happen this year, although it will be the kind of good that has passed through the fire. As with anything that has been refined in that manner, Jake and I will both come out of this stronger and better than we could have otherwise.