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?
Share this:
An Early Start 
I accepted it sometime before some mom in the clinic waiting room assumed my child had a similar issues to her child. She asked me how many surgeries until we were ‘done’. I told her we have the lifetime plan (we will always have neurosurgeons in our life). But sometimes chronic conditions are less pressing, there have been stretches of great and good. My child has two health plans that are also part of 504 plans for school. Learned about IEPs in case some learning disorders common with conditions we face come up later (some things won’t be apparent until kid is older, shocker for families that only have learning issues come up later without medical issues, so many roads to special needs) but also just decided to drop seeing a specialist who I like but my child just hasn’t needed in a long while and the neurologist can cover the issues if need returns.
LikeLike
I always have said my mom had THREE special needs children. My brother with his CP my sister with epilepsy and her learning disability and me with my extreme asthma. Although there was no IEP for me, I did have to have extra “allowances” at school such as missing school for hospitalizations/Dr. Appointments, exemption from certain phy ed activities, and I didn’t go outside for recess if it was under 20 degrees. I think call it whatever you feel will fit. Whether he has special needs or extra needs, he’s a great kid, and you are an amazing momma!
LikeLike
Thanks, Jen! You are always so supportive and I really appreciate that.
LikeLike
It does seem as if society and “the system” needs a label for special needs to see where the emphasis should be. I am impressed with “extra need” because that seems like more of a fit. They do look for “permanency” in the need and Baby Jax has been such a miracle that I am not certain what is permanent or what he can overcome as he has overcome so very many things. When you seek that label that will fit Baby Jax in an academic meaning…..he will fit special needs as his may be different than most but his are very special also. I marvel at where he has come and the direction he is heading. Thank God he has you all as his family…..as it truly takes a village. God bless each one of you!
LikeLike
Thanks Kathy! I’ve learned that there is a designation of “Other Health Concerns” that will help Jax qualify for the support he needs in school (i.e. extra absence days, etc). I think a big reason I’m having trouble with the semantics is that I really, really hope that Jax’s medical issues are not permanent, but they might be. I’m learning to be ok with that.
LikeLike
Great question that I wrestle with on a daily basis. Our Jack definitely has extra needs, compared to a typical kiddo. He has BPD, will soon be wearing AFOs and still receives PT and OT for delays. But, like you said, academically/cognitively he’s doing just great at the moment, so he doesn’t fit the typical definition we understand as “special needs” in the academic sense. I don’t really have a problem with either label, extra or special. It’s others that don’t want him to be seen as “special” because, for them, it implies “less than.” I know that Jack is NOT “less than,” no matter the label. I want others to know that too.
LikeLike
I could not agree more with your blog post and with Heather’s comment above. V is in a similar position where he’s not part of the “traditional” special needs definition but he definitely has extra needs. Hello third lockdown. But Heather is totally right. I have absolutely no qualms with whatever labels we need to get him the help/accommodations he needs now or later. But others don’t like that because it does imply he’s “damaged” or “less than” or forever in this group that they don’t want him in. We never see him in this light and it would be great to bring some light to the fact that these labels don’t have those implications.
LikeLike
Yes! (And I think that’s why I am having a hard time with the semantics. Up until recently, “special needs” did imply permanence to me and I’m not ready to admit that Jax’s medical issues might be permanent!) This is why it’s so great that so many of us blog and share our stories. We are allowing people to really get to know our kids with “extra needs” as real people. Hopefully that will help us reduce some of the stigmas that accompany the labels.
LikeLike
Good point, Heather. Maybe that’s why I’m having such a hard time with the semantics. The label is just a label, but the implications are real. A label of special needs gets Jax the support he needs, it’s a simple as that. It doesn’t mean he’s “less than!” I’m glad people like us share our stories so others can truly get to know our kiddos and see past the labels.
LikeLike