Being Different

Yesterday I had to have a talk with Sam about how it feels to be different.

There is a boy, Cadence, whom Sam has always admired for his charm, wildness and agility. Sam usually loves to hang out with him in the pool or at the park because the boy is full of fun and loud about it. Lately, when Sam sees Cadence, he turns in on himself and makes himself small. Sometimes he even wants to leave wherever we are if Cadence is there. I hasten to add that Cadence has never been anything but nice to Sam. He has not ever criticized or hurt Sam. Sam simply feels his difference.

I have seen this interaction with another child and her daddy. Tessa is fairly adventurous and her dad likes Sam. He often comes up to Sam to "pound it out" or get a high five. Sam likes him, and probably Tessa as well. Despite this liking, as soon as Tessa's dad says, "Sam, watch Tessa," and invites Tessa to do some acrobatic trick, Sam tries to leave. I say tries because if he is not in his walker or wearing his swimmies, he relies on me or another adult for locomotion.

In other instances, Sam has been on the brink of speaking and stopped himself from making a sound.

He has a great book by Todd Parr called, "It's OK to Be Different." Unfortunately, this book doesn't talk about how it feels to compare oneself and come up wanting. I suppose I will try to write a book about this for Sam, since nothing else is available. In the meanwhile, now that my heart is wrung out, I suppose I will hang it out to dry.

Because I dont have enough to do helping my physically disabled child with his functional issues, I seek out the need for intensive advocasy . NOT

The Update: Sam was on the waiting list for Tree of Life, the Montessori charter school. He was first. He got in. Nobody told me because word came down from one EG, special education director, that first we must have a meeting to be sure his needs could be met. Funny, but nobody called me to tell me any of this. Meanwhile, his current preschool teacher advised me to sign him up for the neighborhood school, "just in case." I told her that I could not go observe that school until I finished my college semester. She went out on medical leave for a month. I happened to call the charter school to see what was happening with the waiting list and discovered that he was in-- providing this meeting I had never heard of, but was supposed to receive a call about from the special ed office, went well.

I called the special ed office. No explanation. I leave a message and don't hear anything. Then I called a special ed advocate. I repeatedly call the special ed office. Then I had a phone call saying when Sam's teacher comes back, there will be a meeting. Then no meeting, no call, but, once his teacher returned, repeated urging to sign him up for the neighborhood school. Still no contact from the Special Ed office or the charter school. I go observe the other school. I tell them I want two years of kindergarten, which is automatic in the charter school. I am told this is absolutely not possible. No word on the charter school (where it will cost more to provide Sam with services, need I add). I tell his teacher that I very much want Sam in a two year kindergarten. Inquiry made on her part. Suddenly, one of the people who told me it couldn't happen AND (via his teacher, no actual communication to me that could be quoted) the special ed director says, yes it is possible, but not guaranteed. So now, with my deal breaker ostensible resolved, I agree to put him in the neighborhood school.

Now we prep for an IEP. I had previously agreed to a date, but when I tried to change it, this was (illegally, I believe) refused. Last week I sent the Ukiah Unified Special Education Director a letter requesting an assessment of Sam's behavior (not acting out, just preventing himself from learning and focusing). I have not heard back. I have sent this letter to all of the IEP attendees along with my write-up for the IEP, emphasizing Sam's need for a better communication device. When I go to this meeting, I go armed with the knowledge that, by law, Sam can be reassessed for communication by an outside source at my request AND at the district's expense. I am on fire.