Two Momentous Years

Two years. In adult terms, two years is nothing. And then you have children. And, though they fly by, two years and the development that occurs within them are momentous. These past two years have been momentous.

Where were we two years ago this November? I had a one and four year old. I was working half time- my dream job, striking a balance between the role of mother that I adored playing and the role of teacher of young children. The mother role allowed me to spend time with my thriving, spirited boys, arranging playdates, spending extra time cuddling, making messes in the kitchen cooking pancakes together in the late morning, and cooking, cleaning and running errands during the day in order to keep the home running efficiently and effectively. The teacher role allowed me to have my own space to create and cultivate my craft,  helping students grow as readers and writers, and interacting with peers and colleagues, brainstorming how we could improve and reach students even better.  Two and a half days of each, plus the weekend with my family. What could be better? What could be more perfect?

But I was concerned. Concerned about Rocketman’s (then 4) development. His sensory issues. Fine motor. Gross motor. Speech. And, while my concerns had been mounting for two previous years, the medical community in which he was involved finally took my them seriously and sent him for evaluation.

This time two years ago, Rocketman’s OT evaluations came in. And they were not pretty. Sensory seeking behaviors combined with sensory avoidance. Weak core resulting in developmentally delayed gross motor skills. Weak left side of body. Delayed fine motor skills. He could not draw a picture beyond a circle. He could not copy shapes. He could not stand on his left foot from kneeling without falling down. He could not run down a soccer field and keep up with his peers. But the most alarming thing of all was that he could not function in his Pre-K classroom because he was so overstimulated. And he would completely shut down. And I was supposed to send him to kindergarten in a year. And he wouldn’t be ready for the developmentally inappropriate content that kindergarten currently offers. And that’s when my third role began: the role of parental advocate for my child who officially had special needs.

My previously designated playdate Mondays were now designated for speech therapy in the middle of the morning. Right at the point that the one year old toddler would be ready for a nap and grow manic, running through the hallways of the school while the school staff looked on disapprovingly and I wrangled him apologetically for the thirty minutes that Rocketman received therapy.

Tuesdays I took Rocketman to pre-k, checking in with his amazingly gifted teacher to see what kind of progress he was making coping in the classroom and learning that the progress was slow. Then I would run errands with Bubba or take him to music class and really get to enjoy my “Mommy” role…until 12:30, at which point I would again put on my parental advocate hat and pick up Rocketman from Pre-K. Bubba would go down for a nap and at-home therapy for Rocketman would begin. His home sensory diet. Fine motor manipulating beans, heavy work, usually a “project” consisting of sensory friendly materials. Then a balancing course. Mommy and Rocketman yoga. Heavy pressure. Brushing protocol. Brushing protocol. Brushing protocol. And then Bubba would wake up. And I would attempt to make dinner while he tore my house apart. And then Rocketman would eat dinner, getting every bit of food all over his face and drool. And I would be ready to go to work the following day.

Wednesdays and Thursdays were my days. Where I would work with kids and colleagues and focus my creative juices on working to become a better teacher every day.

Fridays I worked until 12 and then picked up Rocketman while Bubba napped at his one day of daycare and I brought Rocketman to one on one OT therapy.

Saturdays and Sundays I spent time with family and prayed all of our work with Rocketman would adequately prepare him for kindergarten. But knew he wasn’t ready.

And so the battle began to get Rocketman on an IEP for his sensory, fine motor and gross motor issues and to allow him another year in pre-k to be able to receive therapy in a developmentally appropriate setting. And, what a battle it was.

Our victory began another year of therapies, evaluations, sensory diets and brushing. But this time the progress wasn’t so slow. Instead, Rocketman was growing leaps and bounds. And this time, when kindergarten registration came around, we knew he was ready.

So here we are. A new year. A new school. A new and improved kid. And a new IEP meeting to discuss what should and should not be included in his new IEP.

The teachers think he’s fabulous. He’s so smart. So verbal. So funny. And he is for sure! And I’m so glad that they see and appreciate that. But I warn them. He had trouble focusing. He couldn’t function in a classroom. He ran out of theaters. He. Melted. Down. But, they don’t see it in school. They would never have guessed had I not shared that.

At our first IEP meeting at Rocketman’s new school, I heard it all. All the positives. He is thoughtful. Kind. Funny. And what a memory! And what great progress! And just sign here if you agree to the IEP.

And as I read through, I was surprised to see the piece that was missing. The sensory piece. The OT. The therapy. Not there.

“We just don’t see a need for it. If you had not shared his history, we would not have had any clue that that was ever an issue. And if it was, it is certainly not anymore. And if it becomes one then we reconvene the team and add it back in. But for now you should be celebrating. Because he has come this far that it is unnoticeable in the classroom.”

And I wanted to put on the breaks and yell that, “No! You are not seeing it because you choose to not see it! The issues are there! He still sucks his fingers! He puts fluff up his nose! He takes hours and hours to go to sleep and cannot stay asleep for more than 4 hours! He has Special Needs! You need to meet his needs!”

But here is the truth: At the end of his second year of pre-k, his teacher said the same thing. And his occupational therapist. And the speech therapist. And when I had him evaluated at the end of the year last year by an outside occupational therapist, he was assessed as not needing services. And so, really, this was the third time I’d heard this in the past 6 months. My child was no longer considered one with special needs.

And, of course, it was my mother who came to talk me down. “So three groups of people agree. His issues are not hindering his success in the classroom. And that is because: you have already done all the work. All the fighting and early intervention and sensory diets and extra time paid off. And now you are seeing the rewards of your hard work.”

So, then, why can’t I celebrate? Is it because I have lost a part of myself in Rocketman’s success? The parent advocate part? If so, I should simply step off my soapbox and walk away quietly and celebrate in triumph. But, I’m not quite there yet.

Being a parent of a child with special needs is something that one could never understand unless they were to go through it themselves. And, though I’ve considered myself to fit that role for at least the past two years, really I’ve sat on the periphery. My child did not have severe special needs. His services were limited. He was able to do most things his developmentally typical peers could do. He was just not so great at soccer. Or writing. And he’d run out of crowded places screaming. Otherwise, one would never know.

But, I still identified him as a child with special needs. And I still identified myself as a parent of a child with special needs. And I still worried incessantly about his development. And how these needs would affect him as he grew older. Socially. Academically. Emotionally.

And then all of a sudden after two years it’s like: poof! Oh, he’s all set. Totally typical. Issues? Nope. We see none! Time to celebrate!

So I will. In time. With caution. Because, while I really am overjoyed that this child, who took two years to prepare for this moment of entering kindergarten, really is doing so well in this new setting, I can’t look at him without seeing the child that curled into a fetal position and screamed in pain the first time we tried to take him into a small movie theater at 3. The child that fell out of of his chair every single night at dinnertime for the entire year he was 4. The child that needed deep pressure and joint compressions every night in order to go to sleep at 5. The child that sat under a table and wept in his classroom because he was so overwhelmed with the environment and could process so little of it.

He has come so far in two years. I know. But, just as it took time to process that my child had special needs, it may take some time to process that he doesn’t anymore. And when that happens, I will celebrate and rejoice over our grand successes. But for now I will reflect on how much change these past two years have brought and take comfort in my most cherished role of all: mother of a smart, funny, kind and, yeah, super quirky kid that has momentously transformed in the past two years.


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