Wednesday, May 4, 2011

IEP Transition Meeting

The past two years Garrett has been in special education programs. In Louisiana last year, he was in a full day program with half special kiddos and half typical kiddos. We usually picked him up by nap time, 1:00, because he never napped at school. This year has been a half day program, but since it is cooler here, he can ride the bus to and from school. But the time is here to move on, to real school, to kindergarten....maybe not.

Garrett will be six in July. His transition meeting was held at the local elementary school today with his current special ed staff and therapists and the new team at the elementary school including the principal and the nurse and all his new therapists. I had prayed we would have more angels sent our way to help our son, and I got MORE THAN I EXPECTED!!!! These women are SAINTS!!!!! Everyone was receptive. I geeked-out and made a notebook deal for each person complete with his IQ scores, GI letter explaining his inability to be potty trained at this time, other standardized testing from the psychologist, detailed info from his developmental pediatrician, and tons and tons of great info from MitoAction and the United Mitochondrial Disease Foundation. So I went into it like a business meeting, complete with photos of Garrett so everyone knew his sweet face. They were all thankful to get so much information and even promised to watch the MitoAction videos to become even more educated about Mitochondrial Disease. The school nurse had even heard of Mito and wanted to know what type he has....that's a cool deal!!!

One at a time we introduced ourselves and then the current therapists gave me their testing results from weeks of testing him. Bottom line is that in the physical area, he was scoring 2-3 year of age, and in speech and occupational therapy area, reading readiness, and pretty much everything else, he is three. Three to three and a half. So interesting because many, many times when asked to describe Garrett, I have said he is like having a three year old.....but triplets!!! So he is like three on red Koolaid!!! Seriously, I have said he was three forever. So three he is, for what seems like forever now. SO he is stalled at half of his age in all areas, and physically he is under three. Hhhmmmm. Okay, swallow that. Once again, just hearing what I can say from others is, well, hard. But good and real and necessary and truthful.

SO I went into the meeting as the psychologist recommended, gunning for full day school and a one to one aide, and it didn't work, but it couldn't possibly work. Bottom line is that Garrett is three, not ready to be in a three hour kindergarten class in rural Idaho where reading is heavily taught....for two blocks of 45 minutes and another an hour. Then there is math for a half hour. We talked about trying to place him there, but then it became apparent that there is no way we can expect that from Garrett or the teachers or the other students. He would hate school, always be a disturbance, and never be able to keep up, much less pay attention for that long. So then we came back to the day program I had observed a few months ago. It has more affected kiddos in it.....from moderately impaired to severely affected. I spent a couple of hours in that class observing and meeting the aides and the AMAZINGLY WONDERFUL main teacher Jannel. I loved her from minute #1....and her son, Baylor, is in Garrett's class and will be in her class next year. While at first I thought Garrett would not do well because of not enough "normal" kiddos to model. However, once Jannel explained how one of her three aides would be able to take Garrett to parts of the regular class and the special activities and resource room for extra one on one help. I started feeling it. Jannel was so excited to have Garrett coming to her class....seriously, y'all, this woman is AMAZING!!!!!!!!!!! And I am completely in love with her son Baylor. And if nothing else comes Garrett's way for a job, I am most certain he would gladly push Baylor's wheelchair around for the rest of our boys' lives!!!! So sweet!!

Problem, though. The psychologist wants Garrett in a full day program so he learns more, catches up some, etc. The neuro and developmental pediatrician also agree and add we need Garrett to be in school all day for our sanity as well. Agreed. But there is only a half day kindergarten. But wait, everyone chimes in that there are several local organizations that Medicaid will help him get into that will do behavioral therapies with him. So other kiddos in Jannel's class are picked up by these organizations after their first or second half of the day classes at the elementary school, then take him for more one on one including help with his school work with coordination of those folks and his teachers through his IEP. They can also take him out in public to stores, restaurants, etc., to help him learn better how to react as normal folks react.

SO there, full day, did it. But then there was the question as to whether he should take a break at him for a couple of hours after morning kindergarten (we all agreed the first half of the day is best for classroom opportunities for learning) for a nap and lunch or if he should be picked up from school and carry on through the afternoon. We will have to see on that one.

So it wasn't a big surprise as far as what was available, but it was a surprise the comfort and people God placed in my life during this process today. I am humbled and thankful.

Meanwhile, the emotions.....the emotions. Garrett is one of "those" people. He is one of those who will be navigating WalMart with a personal aide to teach him to act normally. He will be one of "those" people in one of "those" vans with other of "those" like him. This may not makes sense to anyone but me......but it is real. Garrett isn't normal. He probably will never be normal. He is first grade age this fall and he cannot even go into a grade (if you call Kindergarten a grade) below his age. Shoot, he cannot even handle it ten minutes........
My umph is gone. I used it all up preparing neat handouts and all for the meeting and wondering what would happen. Thought I would be fighting to get him in school in Kindergarten all day with a one to one aide, and he isn't anywhere near being able to pull that off yet. If ever. We are here. Wherever you go, there you are......words from an old country music song. And we are here. And where is there? We have no idea where this leads, what the future will take us....Garrett.....or how long we will have him.

Got to keep our heads in the clouds...IN THE CLOUDS....looking to God and being thankful and realizing that while we are on Earth, we are his caregivers and he is our angel. Looking forward to a great school year next year with a team that is concerned about his health and education but even as much or more about his enjoying school, having fun, and being a little boy who LEARNS better how to deal with the life HE lives.

Thank you for your prayers and your encouragement. Each of your comments, calls, emails, and texts keep me motivated. We are so loved, and your love overflows onto our precious boy. And can I pause here to tell you how amazingly well Addie and Ainslee are being with their complicated, difficult brother??? Since we have taken to a more gentle and quiet approach with Garrett, we have seen amazing love and patience with the girls. I am so darn proud of these two. They are my heroes....along with Garrett.

Wow, that was long.....


  1. Clara,
    I am so glad everything worked out for Garrett's school....and it worked out just right for him! I am rejoicing with you! I will continue to pray for you, your sweet family, and for Garrett-the-Cutie as you continue to navigate your way through this complicated world of mito. I SO understand experiencing a victory, and then the other side of the emotions hit hard and there is a whole new series of things to deal with. Just know I am hugging you from far away. :-)


  2. It sounds like a really good plan for next year. The great thing about these plans is that you can change them every year as needed. This is reality this year, but you never know what the future will guys will find your way through it together, though!