Quarter Inch Cuts of Paper

When Wil was a baby, I proclaimed, in unison with many other new parents of babies with special needs, No one will limit my child! The SKY is the limit!

I see these, and many other similar statements, from new moms on Down syndrome social media pages. It is almost 9 years later, and I’m still cheering right along with them, but I know, as time marches on, so do the meanings behind these proclamations.

When Wil was a baby, though he was lagging behind in some areas, he hit many age-appropriate milestones. My proclamation remained the same. Wil is going to reach great heights!

He had amazing support in his Early On and pre-school years through his service coordinator, teachers and therapists. Communication between these professionals and myself was free flowing, and any speed bumps in Wil’s development were quickly addressed. We made it through those years with shining colors.

Sky’s the limit!

Next was grade school. I was nervous for Wil to leave our comfortable pre-school nucleus. The teachers, therapists and I were all squeezed into a room, paper and pen in hand, projector alight with IEP forms reflected on the large screen hanging from the ceiling. Form by form, we went through all of his current achievements and set new goals, accordingly. No surprises, all was going well, until a test score revealed that my 5-year-old son had scored at a 6-month level in fine motor skills. I could not stop the tears.

The sky just dropped a little.

I was very aware that Wil struggled with his fine motor skills, but that reality still hit me like a ton of bricks. I was reassured that the way the test was designed, it did not register many of the “emerging” skills Wil had, and that is why the pre-school therapist was there to pass on her knowledge and notes to the grade school occupational therapist.

This grade school occupational therapist took the proverbial bull by the horns (Wil can be darn stubborn when he doesn’t want to do something), and got to work on one of Wil’s weakest skills, cutting with scissors.

She tried everything! Specially-designed scissors, hand over hand, rewards of bubbles (Wil’s favorite), and much more, all while keeping me in the cutting loop so we could reinforce at home. Wil struggled for a long time to accomplish the pinscher grasp, so pushing his fingers together with the resistance of scissors between them was no easy task.

He simply did not have the control to hold those scissors straight, and so they would topple and crimp the paper. We had crimped paper all over! Wil got to the point of hating scissors, and admittedly, so did I!

Again and again, again and again, we would try, and his occupational therapist continued to work her tough-love magic. Then one day, Wil just got it like he’d been doing it every day.
Oh, happy, happy day!

We’ve had many such stops and starts as Wil has made it now through 2nd grade. He continues to have wonderful friends, excellent support through the schools and through our Ds support team. Yet, as he grows older, there is no denying the growing gap between himself and his peers.

I know there will be many changes and stops and starts in the years to come. I still proclaim the sky is the limit, just like I did when he was a baby, but there is a much different meaning behind that statement today. Though I still look ahead to the future, I know now, that the sky is not touched in broad, sweeping statements, rather, the sky is touched in 1/4 inch cuts of paper.

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