The core of the matter

     There are always memorable comments made at C’s IEP meetings; comments that stick in my head for one reason or another. Usually, it’s because someone on his team has so beautifully captured something about him, and I hold the thought close to figure out what to do with it later. Long past the point of leaving an IEP meeting feeling as though my heart has been ripped from my chest and stomped on, I now feel as though the members of C’s team so closely grasp both his strengths and challenges that I find myself inspired to soldier on in shepherding this amazing child.  

     At C’s most recent IEP meeting it was the statement that C “has no core group of close friends” that stuck with me afterward. Friendly with most everyone, C seems to remain the friendliest kid in the world without any real friends. He’s definitely doing better - he has settled down and the kids seem to accept him more. Yet he continues to be, at his very center, alone. It struck me that this really is the crux of the issue for C. We can work around his handwriting challenges, and we’ll continue to address reading comprehension as the work becomes more difficult. It remains, however, that what none of us can seem to help him grasp is the very thing he needs the most.

A light at the end of the tunnel

     In the midst of preparing for C’s upcoming IEP meeting, I’ve quite suddenly realized that the end may be in sight. Since his first IEPs, which were all about his challenges, to his later ones, which seem to be mostly about his strengths, I’ve hoped for C’s graduation from special education. When we first started down this IEP/IFSP road at 9 months, we anticipated C would enter kindergarten without his IEP tagging along. That was back in the day when we hadn’t really quite figured out he had a real diagnosis other than prematurity. Yet kindergarten came and went, with many struggles along the way to indicate the necessity of future special education interventions. 

     Now I’m having conversations with his team about ways we can keep his IEP for the next couple of years while we wait to see what happens in C’s progression. We’re talking as if it’s a given that he will be IEP-less by 5th or 6th grade. It’s the first time we’ve had a potentially realistic end to his involvement with special education. Frankly, I’m not sure how I feel about that. On one hand, it’s an indicator for how well C is doing. The child is astounding. It’s a time for kudos for all of us on C’s team, past and present, who have helped him become the amazing little dude he is.

     At the same time, I know hyperlexia generally includes some academic downfall at some point during the school years, and while we’re seeing bits and pieces of that in terms of reading comprehension, I’m not sure how big or how bad it will get. My sense is that he will struggle as schoolwork becomes more complicated and they move on to more subjective work. As evidenced by the writing section on his most recent standardized testing, where they were asked to write about why the early people didn’t know much about what was in the sky (which was the subject of the previous questions on the test), C summed it all up in just two, brief sentences at the very top of the entire blank page. “The early people didn’t know much. They didn’t have books then.”

     As is usual in C fashion, he hit the nail on the head. it’s hard to argue with his logic. Unfortunately, it was the right nail, wrong head – for standardized testing, at least. We’ve been down this road before with C’s grouping of an apple and a banana together not because they are fruit, but rather because “red and yellow make orange.” Now who can argue with that?

     So as we come to this “Y” in the road, I’m cautiously encouraged. And I’m hoping that someone out there in C’s future academic experience will look at him as a delicious challenge of interesting proportions – someone who can appreciate and capitalize on the inherent truth that red and yellow do in fact make orange.

A word on IEPs

     It is that dastardly time of year that so many of us dread. No, not Halloween, but IEP time. The “Individualized Education Plan,” code for “special education action plan,” is enough to bring trembling to any parent’s steady hands. It has all kinds of categories, goals, percentages, test scores, etc. It’s a picture on paper of what your child supposedly is. And people spend hours and hours writing them. I know our special education teacher did; she is enthusiastic and capable, and really wants to do a good job. I love that about her.

     But it’s not important. It doesn’t matter what is written in the IEP. Well, it does when there is a problem. When something is not happening, you need to have the IEP so you can say, “Look, here is what’s supposed to be happening and it is NOT.” It is important when you find yourself in a disaster situation with a school that does not get or does not know how to deal with your child. But even then I do not find an IEP all that helpful. We have been in that disaster situation (I keep calling it the “Great Montessori Experiment,” although “great” means “NOT great, but really, really terrible”), and the IEP did nothing for us. It does not matter what is written in that document if the people on the team are not capable of carrying out those goals. Ultimately we questioned if, IEP or no IEP, we really wanted those people being responsible for our child. The answer was no, which is how we ended up here, at our new school home.

     So here we are, in our second year in this new school, and we had our yearly IEP meeting this morning. A group of people, including the principal, sitting around talking about C for an hour. It is a great thing, really; ideas flying around, suggestions made, handwriting studied. And somehow, I walked out of there and found myself the newest Cub Scout Den Leader, but I’m still not sure exactly how that happened. These are highly skilled people.

     What I have found, over the years, is that it is about the people around the table, not the document on the table. It is about a group of people who are not only excited about my child, but take ownership of what he does in school. It is about caring how he does, wanting to do right by him, and cutting or adding services based on what he needs, not on what the budget needs. Perhaps I am seeing things through rose-colored glasses, but I always walk into the room at this new school feeling like these people are on C’s side. Not my side, not their side, but C’s side. And that’s where we all should be.

It’s all about your principals

     C attended two different kindergartens, because the first one we tried was so terrible. There was a little girl in his class who had Wilson’s Syndrome, which is an autism-like genetic illness that has at its base a high copper content in the body. I went in for lunch a number of times and sat with the kindergartners outside. Several of the kids were making fun of this little girl behind her back and saying very sophisticated and horrible things about her. Frankly, I wasn’t exactly sure what I was supposed to do or say given it was a Montessori school whose main tenet seemed to be that adults weren’t supposed to get involved in much of anything.

     I later brought up the incident with the principal, while attempting to explain to him my concern about C’s future and his complete lack of friends in his class. Mr. M’s response was that this little girl often hit other kids and that explained why the kids didn’t like her and therefore made fun of her. It seemed completely okay with him that she was the brunt of vicious comments. This wasn’t my first clue that Mr. M was not the kind of person I held much respect for, but it was one of the most telling. It broke my heart that his answer to the problem was to blame the little girl instead of working with her aide to make sure the incidents lessened as well as perhaps helping the other children understand why she often lashed out.

     The most damning moment for Mr. M, however, was the day after a particularly unpleasant IEP meeting. My emotions were raw as were my eyes from crying, and as I tried to get out of the school after dropping C off with a minimum of interaction with anyone, Mr. M called me into his office. As he was yelling at me, with door open, teachers, parents and students wandering in and out, he made a comment I will never forget. “I don’t care if C has any friends,” he screamed. “That is not my problem!”

     This, from an elementary school principal. I understand it’s not in a principal’s job description to help children have friends, but that comment brought on a light bulb moment for me. We pulled C from that school right in the middle of the year and never looked back.

It can go either way.

     I’ve seen autism do many things to many families, and more specifically, to many mothers. I’ve been struck by two types of mothers I’ve seen, and I can see how it can go either way.

     First, the Mom who has such a grasp on her own kids and how they function. She recognizes the difference between autism behavior and kid behavior. She has the delightful ability to advocate for her children without being confrontational, and I envy her that skill. While killing the school staff with kindness, she manages to get what her kids need into their IEPs (Individual Education Plan) and probably makes the IEP team members think it was all their idea in the first place. She is calm, cool, collected, and I want to be around her in the hopes some of it will rub off.

     The second Mom, (sadly, I’ve seen many more of these), breaks my heart. She is beaten down, either by difficulties with her child, frustrations with the school system or the inability to find any doctor who can help. Recently at a meeting for parents with special needs children, she spoke her piece, shaking with anger and rage, and stormed out of the room. I didn’t know whether to be relieved or to cry, and frankly, it made me feel horribly lucky and terribly sad for her at the same time.

     I can see how it could go either way for many parents. We struggle so to help our children, to make sure they are getting what they need in life and school. Nothing is what we thought it would be, but we of course adore our children. We try to maintain a balance between the time we want to spend with them just playing with no agenda and the time we need to spend with them teaching them important life skills. We stay up late researching, sorting through medical bills, trying to read lab reports, and all the while trying to make sure we are taking care of everything else in our lives.

     But I know which Mom I want to be.