Parent Voices

Wishing all parents can have access to educational services they need


Note: Parents who have chosen a variety of schooling options have shared their educational wishes for 2016. This is the final installment in this year’s series.

by Jennifer Wilmot

Seven years ago, my daughter was born a beautiful, pink baby girl: six pounds, six ounces, ten fingers, ten toes, and a full head of hair.

2016 wish logoYet, just minutes after being placed in my arms that first time, she was diagnosed with a cleft palate, and hours after that, we would nearly lose her to severe heart defects.

Since then, my entry into the world of special needs parenting has been a persistent whirlwind. My daughter has Digeorge Syndrome, also known as 22q11.2 deletion — the most common genetic syndrome you’ve never heard of, second in incidence only to Down syndrome. In those first few days, I had absolutely no concept of what being the parent of a medically complex, special needs child would be. What would our future look like?

Since my daughter was about two months old, we’ve had two to four therapy sessions a week, every week, for seven years. This special girl has worked so hard for what so many take for granted. I would read blogs about “new mom guilt” but could never relate to the breast-fed-vs-bottle-fed controversy. I only longed for my tube-fed child to gain weight and eat by mouth those first few years. We celebrated every ounce she took in. Like all parents who want the world for their child, my husband and I did everything to provide the best care and intervention we could.

Wishing special needs children can get support they need, without a fight


Note: This week on the blog, parents who have chosen a variety of schooling options will be sharing their educational wishes for 2016.

by Lydia Burton

When I think of the wishes that I have for my child, so many of them revolve around his education. Not just the ability to tailor his education to his individual needs, to provide him with all of the resources that I possibly can, and to help him realize his full potential, but for other people outside of the special needs circle to truly understand why his individualized education plan is important, and to help stand up for it.

2016 wish logoI wish I didn’t have to justify every choice that we make that falls outside of the traditional school system. Parents who decide that the public school system isn’t a good fit for their child typically don’t have any major issues with the system as a whole. It simply isn’t the right fit for their child. When people take this as an attack on the system, what they don’t realize is that, with or without accommodations, if a school isn’t what’s right for our children, we aren’t going to place them there.