Does My Child Have Special Needs?

When I was pregnant I often said “I don’t care if it’s a boy or a girl – as long as its healthy.” 

Did I really mean that?

Does a child with a 93 day NICU stay, oxygen support for 146 days, 6 blood transfusions, 6 surgeries, two MRIs, physical and occupational and speech therapies, Chronic Lung Disease, and a brain tumor count as healthy?

Probably not.

I take what I said back. I wouldn’t trade the Jax I have for a “healthy” version. Healthy or not, Jax is the best thing that ever happened to me.

It’s no secret that our family is facing things that most families do not have to face. When talking with families of typical children, there is always a point when the other parent looks horrified. They say things like “Wow – I could never do what you do!” Usually, that shuts the conversation down. I can tell they don’t want to hear any more. (And frankly, I interpret that as “Wow – your life sucks!“) They can’t relate because they have not had to experience such an intense medical journey.

Do Jax’s medical issues count as special needs?

It’s hard to find a concrete definition of special needs. Most definitions make reference to the additional support needed in a school setting. Cognitively, Jax is tracking in the normal range for his actual age. He has a small speech delay, but he is making huge progress. By the time Jax enters preschool and kindergarten, he will most likely not need any additional support for learning. (Fingers crossed!)

Jax doesn’t really need any support physically. He wears an AFO on his left foot for additional support, but that does not qualify as a documented physical disability.

Chronic illnesses, i.e. a brain tumor or Chronic Lung Disease, are rarely mentioned in a definition of special needs.

This week, we learned that the hypospadias repair did not work. Jax will need another surgery. The pediatrician told us that Jax’s tonsils will probably have to come out. The pulmonologist told us Jax should have allergy testing to help manage his Chronic Lung Disease and asthma.

The neurosurgeon said things like “I’d rather wait and remove the tumor when he’s older.” and “When he goes through puberty, there is a high likelihood the hormones could cause the tumor to change.” (For now, the tumor is stable and surgery is not necessary! He will have another MRI in four months.)

Jax’s medical issues are a big deal. We will be a “medical family” for a long time to come. But I don’t know if that counts as “special needs” because he doesn’t have a defined diagnosis for a lifelong disability like Down’s Syndrome or Cerebral Palsy.

So, I came up with my own term. I’ve been using the words “extra needs” when describing Jax’s medical situation. Do you think that fits?

The only reason I’m even thinking about the label of special needs is because with that label, Jax qualifies for extra support. For example, an child with a label of special needs may be allowed more absences from school. And, believe it or not, Jax is going to start preschool next year! It’s closer than we think. And if Jax’s path continues the way it has been, he will need those extra days out of school for MRIs, surgeries, respiratory infections, etc.

I feel like we’re living in the gray zone – we are different from typical families and we are different from special needs families. I’m not sure where we fit.

There is such a wide range of extra and special needs. If your child does not have a clearly defined disability, did you find it difficult to use the words “special needs” to describe your child? Do you prefer the term “extra needs” over “special needs?” At what point did you accept or acknowledge that your child has special needs?