Score

Nine sessions of basketball at the Y.

Eight weeks each.

One game each week.

Sam made the first basket of his career yesterday.

Need I say more?

Medieval Times

Yesterday Sam went to Medieval Times to celebrate his friend Danny’s 8^th birthday.  They have been in class together since Kindergarten and on most days they consider themselves best friends. While both struggle with all things physical and are socially goofy, they are kind, thoughtful and caring. Sam and Danny are true good kids and you can’t help but cheer at how hard they try.

His mom, Katie, and I often breathe a sigh of relief that they have each other. Through them, we have become friends. We swap therapy stories, compare doctor referrals, share IEP details and offer each other much needed support when the worries take over.  Lately our focus has been the imminent change to Special Ed in our town. 

Four years ago, our district got a new Superintendent. Till then, co-teaching was offered in just one school and most Special Ed kids were bused there. Those who got to stay in their home schools were pulled out of their classrooms during academic lessons to learn different material with a Special Ed teacher in the Resource Room. While both options provided the academic support necessary, neither was ideal since the Special Ed kids were singled out. It added another difference to their already too long list.

The new Superintendent came blazing into town with new ideas; he mandated that each grade had to include a co-teaching classroom. This meant that kids with an IEP could stay in their home school and they wouldn’t be pulled out – they could stay in their classroom all day to learn side by side with typical kids. Sam’s Kindergarten class was the first inclusion class in our school and it reflected the start of this new policy. 

Pre-Brain Balance, having a special ed teacher in the class for the entire day was ideal for Sam. Even though he has no learning disabilities and is on grade level, he needed a lot of help staying on task and transitioning from one subject to the next. The rest of the class seamlessly switched from one book to the next but Sam didn’t. He missed the teacher’s cue and in a regular classroom, no one would have noticed. The teacher would keep teaching. He would get confused. She would ask him a question. He wouldn’t know the answer. And boom – this is how Sam could have received a label he didn’t deserve. His teacher would start thinking he’s not smart. Or that he’s a troublemaker. So she would stop calling on him or change her tone of voice when talking to him. Then he would feel bad. His self-esteem would decline and he might start living up to the label he was given. But this never happened to Sam because Mrs. Holland encouraged him to take the right book out. He kept up. He didn’t get bored or frustrated and his school experience was what it should have been.

At a meeting last month, the Head of Special Services struggled to explain the changes that are coming next year. If you think I am intense, you should have been at this meeting. It was a heated two hours filled with flailing arms and raised voices. Over and over she told us to trust her because she wouldn’t let any of our kids fall through the cracks. But no one trusts her. And the changes she vaguely outlined were scary. She should have provided more concrete details on how each child’s needs would be addressed. As she explained it, the Special Ed teacher will no longer stay in the inclusion classroom all day. She will be pulled out to work with kids (typical and those with IEPs) who need reading help. It’s great that kids who don’t read at grade level are getting what they need to catch up. But funding for this should not come from our kids’ classroom. Parents left the meeting scared and frustrated; She did a terrible job making us feel comfortable with the new system.

Very smartly, Sam’s principal followed up this tumultuous meeting with one for just our school. Our kid’s case managers attended and they all explained, calmly and respectfully, that the changes would not be as dramatic as we feared. They offered to meet with us each one on one to go through our child’s plan.

So what does this all mean for Sam? Next year, there will be two teachers in his classroom for most of the time. The second teacher might not be in the room during non-academic times like Morning Meeting, but she’ll be there for all key academic lessons. Phew. This is what I wanted to hear. Yes, he’s been a rock star these past few months. But I really want that second teacher there as backup for as long as possible.

Katie and I talk about the services offered in their school a lot. She knew these changes were coming and was so concerned that she decided to enroll Danny in private school for next year. She felt that this was the only way to guarantee that he will get what he needs. I think she made the right decision but when she told me I wondered if we should be doing the same thing for Sam. I don’t think so. Because here’s the truth – and I hope his case manager and Principal aren’t reading this - for the past month or two Sam hasn’t needed much help. He keeps up without it. At the end of the day, he is the first one with his backpack ready. He switches from one subject to the other – no problem. He raises his hand with the right answer, participates in discussions and is a true contributor to the class.

And what does Katie think of Sam these days? When I picked him up from their day at Medieval Times she said he was great:

I always knew this Sam was there, but he couldn’t quite get it out. And now he can. It was so great to see.

But shhhh. Don’t go screaming any of this from the rooftops. We don’t want anyone to take away that safety net – not yet.

History

In previous posts I’ve alluded to Sam’s traumatic preschool past. Since all is going well in present day, this is a great time to step back and share a little history. It’s a long one with a lot of details so take a break midway through or skip ahead to the next post. I won’t be offended.

By the time Sam was 15 months old, we knew something was up. He wasn't walking or talking and was really spacey. He qualified for numerous Early Intervention services – speech, PT and Developmental Intervention (DI).  He finally started walking right about when the services kicked in (of course!) so the PT stopped as quickly as it started. Speech therapy stopped when his therapist got pregnant and they couldn’t find a replacement so we decided to start private speech therapy and continued DI through Early Intervention.

Sam’s private speech therapist quickly shared that she was concerned about his motor planning. What’s that? I naively asked. It’s his ability to move his body around smoothly. It’s too hard for him to figure out how to get in and out of his chair. He should just sit down and he doesn’t. He readjusts and backs up and moves forward and does a whole dance before he gets his tush in the right place to plop down. It just shouldn’t be that hard. Since we were still involved with Early Intervention, she recommended requesting an OT eval. They tested him and he didn’t qualify. Relieved to hear there wasn’t another issue, I took their word for it and Sam went on with speech.

When Sam was two and a half he started preschool at a local temple. At our first parent teacher conference his teacher said she was concerned with how hard it was for him to move around. It was a struggle for him to get in and out of the police car. Leaning over to pick up a book was more challenging than it should be. Something wasn’t right and she wanted him evaluated by an OT. Sounds familiar, right? As much as I had been thrilled that Early Intervention said he didn’t qualify, the reports from these two new experts were too similar so we scheduled a private OT evaluation.  Springboard Therapy (in Morristown, NJ. I love them there) was shocked that he hadn’t qualified for services and recommended that we start right away. 

It was hard to hear that Sam needed more therapy. He responded so well to speech and was now at age level. I thought he was cured; that we’d solved his problem and that he was now a typical kid. Hearing that there was a whole other issue was disappointing and I started to realize that this was going to be a long road.

As a three year old, Sam was shy. He was uncoordinated. He wasn't as happy as I wanted him to be. We contacted the Special Ed department and asked to have Sam evaluated. There's a public preschool in our town for special needs kids that we thought would be a better fit. He did not qualify. While they acknowledged that he was behind physically, they did not see an “impact on his ability to learn." They did a second observation a few months later and while the disparity between Sam and the other kids had grown, he still knew what he was supposed to know so didn’t qualify. It was frustrating. Of course he knew his colors and his ABCs. We drilled him all the time. He had an older brother who was constantly stimulating him. But knowing that a cow says moo and the sky is blue was not the issue. His problem was his muscle tone, his motor planning and his motor skills.

And he'd made through the first few months of school intact. His two teachers babied the kids and the demands were low. But when they returned from winter break, the bar rose suddenly. With the close of the school year in sight, they expected the kids to move quicker and be more independent.  Sam couldn’t keep up.

His day started in a loud echoey hall that was unbearably loud. I would drive up to school, his teacher would unbuckle him from his car seat, he would find his group and sit down on the floor to wait for his whole class to arrive.  Within minutes, he would lay down. He would roll around. He would space out. I know now that he didn't have the core strength to sit cross legged for that long and the sensory overload was overwhelming. 

Next, his class walked single file down the stairs to their room. Hand on the wall, the teacher said. Sam tripped. His hand was on the wrong wall. He walked too slow. He dragged behind.

When the class reached their room, he had to take his backpack off and hang it up. He couldn’t get it off. He couldn’t figure out where to hang it. He couldn’t get it to stay on the hook.

Next - off with the coat! It was too hard to get both arms out. He couldn’t figure out how everyone else got theirs to stay put. He would leave it on the floor.

Finally in the classroom. They would all sit down on the rug for circle time. More criss cross applesauce. He would lay down. He would lean on the boy next to him. He would start talking about something irrelevant.  He would zone out.

And then their day would really begin. Only 20 minutes had passed and he was already exhausted.  He became disruptive. He would break out into laughing fits. He would act silly. He distracted the class. Kids didn’t like it. And the teacher really didn’t like it. Every day at pick up, as she put him in my car, she would list what he did wrong. I would nod my head, apologize and speed off so she couldn’t see the tears.

Tom and I talked to him about what was going but we never got anywhere (he was three, after all). His teacher tried time outs - she would put Sam out in the hall with the other teacher (the warm and nice one who we loved). He would calm down immediately and tell her how much more he liked it in the hall. Can we stay out here all day? he would ask. One day he got sent to the Director’s office because he was being more trouble than usual. He sadly told her it was raining outside (which it wasn’t) and that he wanted to go outside by himself and play in the rain.

Enough is enough. This was happening every day.  I was a wreck. Tom was mad. Sam was sad. I scheduled another appointment with the Child Study Team. His teacher (who I despised by now) wrote down the details and I walked into the meeting prepared. They agreed to another observation. But under law, they reminded me, it could take up to 90 days. I am not an emotional person. I hardly ever cry. I try not to ask for help. But I burst into tears. He doesn’t have 90 days, I sobbed. They will ask him to leave. Or maybe I should pull him out. And then I just kept crying. They handed me tissues and pulled out their calendars. We can get in next Tuesday. Would that work for you? It did. He got in. The rest is history. I guess sometimes it pays to let people know how you really feel.

Quiet = Happy

I’ve been really quiet lately and have not been posting often. It’s not because I’m sad. Or too busy. Or on the phone yelling at Betsy about Brain Balance being a sham. It’s because I just don’t have that much to report.  Everything is weirdly kind of status quo. In a good way. An excellent way that makes me unbelievably happy. 

Sam continues to chug along like the little engine that could. Most days he does something to make me smile. I pause and wonder who this amazing little boy at my side is.  There’s nothing major or earth shaking. I couldn’t write a whole blog entry about any of it but there are all these really wonderful moments that make me sigh….

At his basketball game he actually dribbled the ball and tried to make a basket instead of clumsily trying to pass it as soon as it landed in his hands.

Sam never wants to try anything new and he asked if he could start piano lessons.

Sam hates sports and decided he wants to try playing soccer again.

He winked at Mrs. Holland while she was handing out an assignment. Really?

He winked at Mrs. Holland again the next day as she handed out another assignment. Who is this kid?

All year Ben has asked if they could walk to school on their own. I have resisted because I had visions of Sam wandering into the street while chasing after a butterfly. I don't worry about Sam wandering off anymore and finally said yes. It went off without a hitch and they're doing it again this week.

All Sam ever wants to do after school is get home. Last week, he stayed late to play four square with Ben and a couple of 4^th and 5^th grade boys.

You may be reading this list and wondering why I’m making such a big deal about such little things. It’s because they add up to a more typical childhood for Sam. Better experiences. Which then evolve into more self-esteem and confidence. Which hopefully lead to some extra happiness and a better life. Everything we all want for our kids. So don't think the lack of posts is a bad thing. I'm just trying to sit back and quietly enjoy the moments as they happen.

Progress

It’s hard to believe that Sam is two-thirds of the way through the program. As you know, I am happy with his progress – he’s excelling in school, he’s morphed into a social butterfly, he still likes going to his sessions and he earns lots of stars every week. At one recent session, the crazy competitive mommy in me actually considered counting all the other kid's stars on the walls to see if anyone is doing better than he is (103 - but who’s counting!). Luckily reason took over and I resisted but was reassured when Erin, my trusty receptionist companion, confided that Sam had already earned more stars than the current record holder had at the same time in his program. Hearing this allowed me to sit back in confidence and know that my boy Sam is flourishing.

Today was the day to review his final progress report and get some numerical support for my unofficial observations. After much back and forth about setting up a time, Betsy and I decide to meet at Starbucks. I was hopeful that she would tell me that Sam has maintained his lead; sadly I didn’t walk out with a crown for him but was ecstatic with what she shared. And maybe they’re saving it till graduation. Ha!

There are several different ways that progress is evaluated and Sam has gone up enough to make me happy in every one. I don’t know how many details you really want to hear about my kid, and I don’t want to be a super braggy mom, but I hope this information will be useful and provide a sense of what you too can expect for your son –

In the three different areas that are stimulated during his sessions (tactile, visual and auditory) Sam has reached the highest level possible. This means that the brain stimulating gadgets he wears while he exercises are turned up to high. At this level, he receives the most stimulation (ie benefit). This happening with a few weeks left means that he receives the maximum input for the remainder of his sessions. This is a good thing and will produce the most results.

The cognitive room is an area of strength for Sam. His initial evaluation had him at or above grade level for most categories (word reading, pseudoword decoding, oral expression, oral reading fluency, spelling, math fluency, etc.) The three areas that were challenging for him were listening comprehension (he was 3 grades behind – not a surprise at all to me or his teachers – paying attention to anything, even on Ritalin, is unbelievably hard for him), math problem solving (so, so challenging for him to conceptualize) and handwriting (this is where his fine motor skills fail him). Eight weeks into the program, Sam has increased 1-2 levels (= grades) in every category. So where he was already performing above grade level, now he’s even more ahead. And in the areas he was behind, he’s closing the gap. Awesome.

For tactile activities, his age equivalent level increased from age 3, 4, 5 and 4 (yikes) in various categories to age 10, 8, 8 and 9 (respectively). So he went from a preschool level up to where he’s supposed to be at age eight.

For core muscles, his age equivalent level increased from age 7, 6, 8 and 3 in various categories to age 12, 10, 11 and 10 (respectively). So my boy with extraordinarily low muscle tone went from slightly below age appropriate strength to exceeding age expectations. Awesome again.

For synchronization, his age equivalent level increased from age 5, 5, and 5 in various categories to age 10, 10 and 9 (respectively). Dancing with the stars, look out!

It’s reassuring to know that along with the social gains I see daily, he’s truly improving a variety of key skills. And while his lack of coordination and continued inability to make a basket makes the 45 minutes we spend at his game the worst part of my week, his improved confidence, mood and ability to connect is outstanding. And who knows, maybe now that his brain has grown in so many other areas, it will be able to focus on the truly important things like passing, dribbling and shooting. Ha!