Eliza Grace was born on March 15, 2006, at 26 weeks, 4 days, weighing 1 pound 4 ounces and measuring just 11.5 inches long. She is the light of my soul and this is the story of our life in the big city.

Sunday, March 13, 2016

Prematurity... Should It Be a Classification for Special Needs Services?

It is hard to fathom that in a couple of days Eliza will be ten. I look back on the past decade and and am amazed, and often baffled, how she and I have come this far given the grim outlook at her birth and in her early years.  Eliza is an empathetic, funny, bright, loving child, and a pretty good artist too boot.  She is a creative author and can do more math in her head than I can.  

But there are the lingering effects of prematurity and there is no shame in acknowledging this or speaking about it.  Recently there was an article posted on many of the endless preemie parent Facebook pages about a study from the UK concluding that premature children should receive a special needs classification.  As one parent, among many, of a micro preemie, we have argued that micro-prematurity should be a classification for the purposes of receiving special ed services, not only for Early Intervention but throughout elementary school.  I was almost amused by the comments to the Facebook posts, such as "my nine month old 30 weeker is doing great, how dare someone suggest he might be special needs!!!" I shook my head thinking, a nine month old isn't expected to do much, but give me a call in first grade when your kid still can't hold a pencil.  Or maybe you are one of the lucky ones who will have the child that escapes all of the micro-preemie fall out:  chronic lung disease, poor fine and gross motor function, executive function issues, processing issues, ADHD, and anxiety, just to name a few.  

In order to get special ed services your child needs to fit into one of several classifications.  Unfortunately severe prematurity, micro prematurity, extreme prematurity are not classifications.  Many of our children do not fit neatly into one of the designated classifications, so we end up spending small fortunes on neuro-pyschiatric evaluations, which are generally never covered by insurance, and have to cobble together a report that will help get our children the services and accommodations they need to thrive in school.  

Based upon my ten years of dealing with the powers to be in control of Early Intervention, Preschool Special Education and Elementary School Special Education, I would be very happy to be able to check one box called "premature" and not have to deal with the endless crap to get my daughter the services she needs.  Most educators, principals and special education bureaucrats have no idea of what prematurity really means and the long lasting effects of prematurity, nor do I expect them to know this, since it is not something that has been addressed in an educational setting. 

Given all of that, I'm not in the least offended by the idea of classifying prematurity such that your child can receive the services if they need special education services.  

And if you are one of the lucky parents, then stop getting your knickers in a jam over this.


Amy, John, Sam, and Frank said...

TOTALLY agree, Anne! What a long road it has been with our micros. Extreme prematurity should be listed as a classification of special education and it makes me sad that special education still has that ugly stigma attached to it. I wish that wasn't the case. There is a hell of a lot I wish for in the education world. Well, all we can do is the best we can, right? Thanks for posting this.

Catherine W said...

Could not agree with you more. We are also in the position of not fitting any nice diagnostic box other than . . . .something is not quite right! So I try and try to get occupational therapy and speech therapy and anything else I think might help. Like you, I have found that whilst the long lasting effects of extremely premature birth as well acknowledged in the medical community it is a different story in the world of education.

Meghan said...

I totally agree. I have read your blog for years and last July I had my own 27 weeker. I'm so glad I knew so much from your blog and others that I wasn't as blindsided by terminology. My Piper gets EI now and I hope that she continues to receive any support needed throughout her school years but know we may have a lot of battles ahead of us.

best research paper writing service said...

An issue like this is just good to be shared and to be talked about in order to put some clarification that not all students who have this kind of problem don't really need some special education or if they really need to undergo into that kind of learning.

Jean said...

This is so correct!! I inwardly cringe each time I share his birth history with people who do not understand that prematurity causes long term issues that are not always diagnosed. Our former 27 weeker needs more support in the classroom then his typical peers. As he gets older it is becoming more apparent that he is slightly "different" from his classmates. We are lucky in that we are in a small school district that has been able to help our son without too much fuss. I worry every year with new teachers, new classmates, and ever increasing expectations that he will struggle more.