The "special" bus

I have a love/hate relationship with the "special" bus.

On one hand, I think that fact that the school district will literally pick your kid up at your doorstep and drop them off from school is a wonderful thing. I absolutely love our bus drivers! And, I make sure to give them particularly fabulous cookie assortments at Christmas time and continually thank them profusely.

Although, we live so close to the school that it really is more about how much Shea loves to ride the bus rather than needing a ride to school. But, I do think about other folks, far flung in the community who really must need and appreciate the "special" bus. There might be kids who wouldn't necessarily participate in the Developmental Preschool if the transportation wasn't part of the equation.

For us, the buses are the smaller van sized versions. All the seats have either seat belts or harnesses and there is usually room for wheel chairs. All the kids on the bus are "special" to some extent and, for us, there is actually a pretty good little social dynamic going on.

Ok. That's all the good stuff and there is probably more I am overlooking right now.

But, there is something very distancing about sending your kid off on the bus. You don't get to see how they act as they walk into the classroom. You don't get to see the social dynamic with the other kids. You don't get to see how they interact with the teacher or the helpers. Basically, you are shut out.

I never felt really welcome to volunteer in the preschool classes and I can understand. Most of the kids are dealing with separation anxiety and having a parent hover is only going to make it worse.

I just always felt like I needed to hyper vigilant due to the fact that Shea was non-verbal and couldn't really tell me about his school day. Ok, I have been known to be overprotective at times. I admit it.

Also, "special" parents don't get to know each other because they do not collide picking up or dropping off their kids like the rest of the parents. This has to add to that feeling of isolation. The "special" bus is indeed special but a double edged sword. I feel a heck of a lot more unconnected with Shea's class this year because we do the "special" bus both pick up and drop off.

I have been lucky up to now and have been able to volunteer in Molly's classroom for an hour or so one day a week each year since Kindergarten. I hope that I will be able to do that again with Shea. I guess a lot of it depends on how "mainstream" we can go.

Denial

How long can you comfortably live in a state of denial? Oh, trust me, you can live there for a good amount of time, but comfortably?

I remember when Shea was a baby, I had him in my arms as we walked through our back yard. We went over to the chicken yard and I said something like, "Look at the chickens, Shea. Aren't they funny? Look at our funny chickens!" He said, "CH" but then he never, ever said it again. Oh, yes, I thought it a little odd but I waved it off. Denial? You think?

When our doctor flagged Shea's lack of verbalizing at his 18 month check up, I thought, "What's the big deal. He'll talk when he is ready." I displayed a healthy amount of disdain and skepticism about all the "big fuss". I remember floating luxuriously on a river of excuses and anecdotes about other late talkers. And this went on for years. Was that denial? Probably.

Don't get me wrong, denial is understandable and healthy to a certain extent. In this sense, I consider it a defense mechanism that kicks in to protect your heart and mind of the bad news you think may be coming.

Although, even though I was in denial, we still enrolled Shea in the Developmental Preschool despite thinking that he didn't really need it. I was sure in my mother's heart that he was "going to be fine". I remember thinking, "It couldn't hurt."

There is a large and growing body of evidence about the positive benefits of early intervention. But, some parents may avoid it due to their own denial. I know a family whose child was a late talker. They never did identify her or do any treatment or therapy and, sure enough, the child can talk now. But, the child is having problems with school and some learning issues. There is no way of knowing if anything would be any different if early intervention had been pursued. And, I am not preaching that it would. But, it is a lot harder to get a child identified later on in the public school process. Oh, sure you can do it but if they are identified at a younger age, they do benefit for longer.

I would just encourage parents to keep the avenues of help open; and the earlier the better. You can still pursue them even if you are in denial but reaching out and getting more eyes on your child can open up paths that are hard to even imagine at first.

Early Intervention is not time wasted. Even if your child "doesn't really need it", there is no harm done. No child suffers from just a little more quality attention and in some cases it may be the exact kind of attention they need. And, there is no denying that.

IEP or Individual Education Plan

I will admit right out of the gate that I HATE standardized testing. I have been a strong critic of "No Child Left Behind" from the beginning and not only because it is an unfunded mandate.

I believe that standardization forces teachers to teach to the test. It also forces kids to learn only what the test asks. I think it stunts creativity and alternative forms of learning for both teachers and students. And, I worry that kids that do not test well view themselves as dumb or unintelligent just because of a test score. I wish with all my heart we could go back to a more well rounded curriculum and that teachers were encouraged to bring their own creativity and interests to lesson plans instead of having their job performance linked to how well the kids pass a standardized test. Alas, I fear that the genie is out of the bottle on this.

So, what does this have to do with Shea? Well, when a child with special needs turns 3, the school district makes their formal assessment about need. A whole fleet of standardized tests are given which determine what services will be provided through the school district. They use these tests as a starting point to determine the IEP for the child. By the way, this entire round of testing happens again at age 6 as the child moves into Elementary School.

I admit I probably had a pretty bad attitude as I headed into this testing when Shea turned 3. First, all the testing is verbal. How do you do accurate standardized tests on a non verbal child? Good question but no easy answer. There was a lot of paperwork, checklists and questionnaires for the parents to fill out. The teachers and specialists were very supportive and wonderful, I just didn't have any idea what was coming or how I would react.

A meeting was scheduled to talk about all the testing and Shea's needs. I didn't really realize how hard it would be to sit and hear the results; the tests determined his language at 9 month old, that his IQ landed below average, etc. I remember pretty much crying through the whole thing; I just kept going through tissue after tissue.

My husband was home with Shea during that meeting and silly me, I went alone. Big mistake! DO NOT go alone to an IEP meeting, especially the first one! Everyone, no matter how tough, will need a support person that first time around.

I remember one of the specialists asking me what had happened that made me so upset. Not her words exactly but that was basically the gist. I said, "I guess, I had promised myself that I wouldn't freak out until Shea turned 3. Now, he is 3 and there is no way for me to deny it anymore." In a word, I was freaking out and the future seemed very dark and scary. They all just sort of sat there looking at me with compassionate, somewhat embarrassed looks on their faces.

It was true. I had tried to stay light, breezy and not over react. I set Shea turning 3 as a threshold for my full scale worry. Well, when it hit; it was fast and furious.

My husband was much more taciturn. He knew that Shea was intelligent and that he would be fine. Was he sad? Yes. Was he concerned? Yes. But, he wasn't a puddle like I was. It's nice to have a rock in the family and he is mine. Love you, honey. XOX

Looking back, I think it took a good month to just come out of that depression fog. I had good friends and support but I needed an expert. I realized that the school would never be able to give Shea the sort of intensive therapy that he would need. They just can't afford it. But, how does one go about choosing a therapist? Hopefully, you have a good friend that can refer you to one, and I want to send out a shout out and a blessing to Sally for helping us find ours.

Child Find and Early Intervention

I really can’t say enough about how wonderful the Child Find Program was for Shea and our family. If there is any advice that I can share at the top it would be; if you have any concerns about your child’s development, search out the Child Find Program in your area.

What is Child Find?

“Child Find is a component of Individuals with Disabilities Education Act (IDEA) that requires states to identify, locate, and evaluate all children with disabilities, aged birth to 21, who are in need of early intervention or special education services.”

There is a lot of good information at:

http://www.childfindidea.org/

Under the umbrella of Child Find, Shea was welcomed into the Developmental Preschool program housed at our local elementary school. In the beginning, we were included in some play groups with other kids that had delays. I found networking with the teachers, specialists and other parents very helpful.

I remember this being a very sad time. I know, parents are not supposed to compare our kids to others but, honestly, it is very hard not to. I guess I was just beginning to realize that Shea was “different” and I yearned to understand what it all meant….NOW! I wanted someone to tell me what did this mean for my kid. Would he grow out of it? Would he just “get it” one day? What did I need to do as a parent to help?

More questions than answers surround times like these. And, even though the teachers and specialists were very supportive and kind, they would not even hazard a guess about prognosis. At the time, I found it very frustrating but later realized that they were in a very tough position. As soon as they predict one outcome and it doesn’t turn out that way, they are blamed. Later, as I was learning the maze that is Special Education in our public schools, I realized this was probably a necessary and perhaps legal directive and it was considered the safest way to deal with special kids and their very upset, nervous and feisty parents.

Again, I am so thankful we got referred to Child Find so early. I see it as the most important first step we make. All the pain, worry and insecurity was still there but at least we weren’t dealing with it alone anymore.

Late talker

Shea came along when my oldest was 5 1/2. She wanted a little sister but a boy was ok too. I was on the cusp of turning 40 and had never imagined to have a newborn at that age but that is exactly what happened.

Looking back now, Shea seemed an easy baby; quiet, slept through the night early, good eater and easy going. He was our blue eyed, blond haired boy. Physically he was perfect, nothing unusual until the 18 month check up. Our doctor ran through the standard checklist and Shea's lack of words was flagged. It was true. He babbled but no words, in fact he didn't seem to mimic. Didn't seem to want to copy.

She referred me to the Child Find program through our local Elementary School.

Honestly, I didn't think there was anything wrong with him. There seemed like so much light behind his eyes, I felt that he was taking it all in but not talking about it. I just thought he was a "late talker" with all the comforting vagueness that term can muster. Everyone has heard stories about a child who didn't speak until he was 3, 4 or 5. Albert Einstein, in fact, did not speak until he was 5. There was so much anecdotal evidence that I felt like I shouldn't worry too much.