He Who Teaches Me

I've done quite a bit of thinking over the past week. My last blog was a result of a lot frustration - it wasn't because of my son, it was really about having to face people exactly like my former self. People who believe they can predict the future based on the past, those who were educated and trained in environments where the best they can offer is an address to delay, and professionals who think parents embellish what their child can do to buffer their own egos. 

If I could only show those people at the table, all new and expectant moms on this journey, and all of society what my son has achieved in 4 short years, they might begin to understand. I wouldn't talk about developmental skills, physical abilities, or even cognitive achievements (as impressive as they are), rather I would start by explaining how this small boy whom I was told would ask so much, has singlehandedly changed the course of our lives. 

Lucas should be named honorary Life Coach because he has created change in every area of our life. We all eat well - it's hard to go through a drive through when you know the stuff in the food could literally hurt Lucas's brain and body. I'm learning to like running - because I like being alongside Lucas when he runs. It's kind of hard to sit on your ass complaining about how difficult it is when Lucas never says no, even when it's raining and I want him to. It's hard not to be inspired by a 4 year old who doesn't know he isn't supposed to be healthy or strong enough to do the things he does. It's hard not to be awestruck when Noah starts lacing up his sneakers just to go with us in the evening.

It's hard to find an adequate excuse for not finishing things, when I spend my days watching Lucas work until he does. You find yourself thinking twice about judging another person, or saying something you can never take back because Lucas's main concern is ensuring everyone is happy. 


It's impossible to let fear get in the way when I watch Lucas fearlessly make new friends at the park, or introduce himself, or participate groups. You find little tolerance for the people who would try to bring Lucas down - the pessimists, the cynics - those who tell you to look for plateaus, look for behavior problems, and look for challenges - they don't see what Lucas is trying to show them.

You learn quickly not to care what others think when it comes to the one person who trusts you most. You find your voice and are not afraid to use it.

Some may look in and think our days are hard, that being at home and "working" with Lucas is a labor. The truth is, there isn't anyone I would rather laugh, bike, run, play games, crawl around, sing, and learn with. It's laughable to hear people say Lucas's ability to learn will be limited when I have been forced to learn thousands of things I never knew just to keep up with him!

I am Lucas's mother first and foremost but I enjoy or days more than anything. I marvel at how much Lucas does, how much fun we have, and how I instinctively know how to teach him.


I know for certain he motivates me more than I could ever motivate him and the one person who I was told would make life less perfect is the exact one needed to fix everything that was wrong before he became part of it.

I am certain all the hockey greats wear their helmets for a potty break!

Those Who Would Like to Teach My Son

Above Photo of brilliant child! :)

It has taken me two days to write this blog. I still can't believe what transpired at the CSE meeting for Lucas. At least I am to the point where I can find the humor in it. The wine has helped.

Here in NYS, a child needing services is followed by the county's Early Intervention Program from birth - age 3. At that time, the services transition to The Committee on Preschool Education (CPSE) and the county shifts the responsibility of services to the home school district. When the child turns 5, services shift again to the home school and CSE takes over. The child must start kindergarten in order to receive therapy services and if the parents decide the child is not ready, they must then drive the child back and forth to the school to receive them. This is where we find ourselves as Lucas turns 5 in August.


I have already sat through the last CPSE meeting where the therapists who have worked with Lucas reported that his progress is outstanding. Physical therapy has been coming only on a monthly basis to consult with us and is shocked at the progress each month because of our physical program (despite the lack of direct PT services). Our OT, having found Lucas's adaptive and fine motor skills to be age appropriate - an in many cases above age appropriate - focuses on a handwriting program that utilizes his wonderful reading and spelling skills. Speech therapy has been coming out twice a week and has also morphed according to Lucas's unique set of skills. The Speech therapist gives Lucas "Reading Homework" which is books that he is to read, talk about and "report" to her at the next session. 


Everyone of these sessions is tailored exactly to who Lucas is and if their report of his skills went to committee without the diagnosis listed, they would probably decide to test him to figure out exactly where he fit because his academic skills are well beyond a kindergarten level. 


With all of this in mind, I headed into the CSE meeting on Monday. Naively believing there was no discussion to be had because I am not sending Lucas to kindergarten, we will be continuing our program and if his speech is not at peer level next year I will apply to the district to homeschool. I thought the meeting was a formality. 


The people who "know better" apparently thought differently.


I went to the meeting with the latest round of reports from the therapists, and more importantly myself, to give an accurate picture of Lucas's development to the group which consisted of a psychologist, special education teacher, PT, OT, ST, school principal, and the school district coordinator of services. None of which have ever met Lucas. 


Cue Amusement.


When I finished talking (and they apparently were done humoring me), the projector screen lit up an on it was Lucas's IEP (Individualized Education Plan) for next year.  I knew they had to put one together - this is the part where I could use the wine. 


 The Special Education teacher began by saying he would be placed in a supported classroom where there is a greater staff to student ratio. I cut her off - "Why?" I asked. "Because that is the classroom that is most supportive of children with learning disabilities," she said annoyed to have been interrupted. Silence.  "What learning disability?" I pressed. Silence. Paper shuffling. "Are you assuming he has a learning disability because of his diagnosis?" I insisted. Silence. 


The psychologist came to her rescue, "No of course not, this is simply the classroom that has built in aides to assist with transitions and management of routine." Cut her off -"Why would Lucas need that?" I asked, "Did you not read the report from the preschool he had attended that said he did all of those things independently?" Silence. Paper shuffling.


I smiled, "It doesn't matter, he isn't going to kindergarten next year anyway." 


The point at which I began to really wonder who exactly had the learning disability was when the coordinator said, we should really have had the school nurse be part of this committee. Beyond annoyed, I cut her off too, "Why? I just reported that Lucas has not been sick in over 2 years." (Minus the nasty stomach flu that killed us all but she didn't need to know about that!) 


"Because of his respiratory problems," she said - "You just reported that you work on them daily."


"No, (you freaking idiot) I don't work to remedy a problem, I work to build respiratory excellence, that is why he runs, that is why he is never sick, that is why he learns easily." I snapped.


Paper Shuffling - and the dawn.


The Special Education Teacher (?) was not about to let it go.  "Mrs. Spiesz, according to the standardized test results I have in my hand, your son has a significant learning disability, severe communication problems, and is not yet even able to run."


-sidebar- VERY PISSED OFF NOW - because apparently I am a liar.


"What evaluation are you looking at?" I demanded. And then it dawned on me.


The regulations state that each child receiving services must be evaluated every three years. His first set of evaluations were done before he aged out of EI - WHEN HE WAS 2!!!!! He isn't due for the next evaluation until after he turns 5.


Not caring I now started to laugh. In the meeting. Out loud. "You all sat down and wrote an educational plan for kindergarten based on a standardized evaluation from when he was 2?"


Dead Silence now.


The answer was yes they did. They did not contact his therapists, they disregarded the CPSE reviews because those were not "standardized" and chose the most appropriate method of planning was to use tests done when Lucas was 2. Plus that allowed them to give him an IEP and put him in the supported classroom where Lucas would bring in some cash from New York State.


I'm pretty sure I wouldn't send a dog to them to be trained, let alone my brilliant son who loves to learn and be independent.


I can't help but feel for other parents too, many of which believe their child's best chance is to be taught by people who know better than they how to teach their child. These people are not interested in teaching Lucas. He was number 121 on their roster and had "Down Syndrome." Their plans for him were written long before they ever thought about meeting him.


The meeting did not end well either, I had done some homework and found out that the school historically attempts to "educate" children with T21 until middle school, where they of course see a "plateau" and decide a 12:1:1 classroom is best. I let them know I was aware of their outcomes and had loftier goals for Lucas. I am not surprised children "plateau" in this system. I am not surprised that children who "graduate" from this system end up achieving far less than their full potential.