Advocating for Your Preemie: School Years

We are entering a new, scary time in our family….dealing with public school and public school systems. D will be 3 in a few weeks. Back in October, he had his evaluation for public preschool. In Kentucky, you have to qualify in one area for a special need in order to qualify for public preschool and additional support services.

I was extremely disappointed in the way his evaluation was conducted. I was originally told it would be a 1.5 hour session, and we would need to come back to complete the other half. It turned into an almost 4 hour ordeal in which my 2 year 9 month old had assessments for OT, Speech, PT, and an IQ/Psychological evaluation.

The school psychologist was late, and so OT, Speech and PT were first. By the time he got to the final portion he was exhausted,  and it was lunchtime. Why did I let it go on? I don’t really have an answer for that. I think partly, it’s because so many of our (his dad & I) concerns for him have dealt with gross and fine motor issues.

Today, I received an IQ report that says he is mildly delayed and low below average, but not enough to qualify for services. That his score will probably impact him during his school age years, but not severely.

I just don’t see this. And his Early Intervention lead was in the meeting and agrees with me. So then my husband asked the best series of questions, how does this report impact him? Where is it stored? Who can access it? Do they need our permission?

I don’t really care about D’s IQ. I think standardized tests can be a tool, but for the most part it is just a snapshot of that day and how the person was performing.

We just want to help him the best we can. We are concerned that we have focused too much on motor and not enough on cognitive. And then I think that’s the preemie parent in us. We’re always searching for answers that aren’t there. We’re always wondering what we may have done wrong.

We just want to make sure we give him every opportunity to be the Drake he wants to be. That’s enough for us.

It’s been a rough week. Yesterday, we got some scary news at Ophthalmology follow up, too. Eye doc saw something very concerning, but D won’t be big enough for the pictures to fully diagnose and check it out until next year. I wish I didn’t even know about it. I need to find some new coping mechanisms for staying out of anxiety loops.


2 Responses to “Advocating for Your Preemie: School Years”

  1. January 31, 2015 at 10:07 am

    We will be doing Jax’s preschool evaluation this spring. It’s completely nerve-wracking! I’m sorry you didn’t get the answers you were looking for. Also, what is going on with Drake’s eyes? We got some bad news at the eye doc this week, too. It’s like we are living parallel preemie parent lives. As far as anxiety goes, I have learned some strategies that I hope might help you. Here’s a link to the list: http://www.preemiebabies101.com/2015/01/dear-mom-waiting-diagnosis-five-things-remember/

    • February 4, 2015 at 11:24 am

      It’s is nerve-wracking! The part that was hardest for me is that in public school or at least this particular system, our kid was not treated as “unique/special” like we are used to from NICU clinic or EI IFSP meetings. I have a real hatred of “standardized” one size fits all, and I am really re-thinking if public school is for us at all. Even though I have 3 public school educators in my family. I have a feeling it’s going to be 12-13 years of “going to bat” regularly to get him what he needs, and for me it was definitely a NICU trigger type experience.

      He has some eye pigment clumping/clustering is how the doctor described it. It is not related to ROP according to our doc.

      Nothing that I have managed to find has very good things to say. All I can hope right now is that it is found to be something benign/less significant than I suspect. Based on the Dr’s attempt at trying to keep us from worrying, and research I think it is possibly some kind of Congenital Retinal Dystrophy or possibly Retinitis Pigmentosa. She said he needs pictures and that it will have to be followed regularly for the rest of his life, but that he is too small until next year for the first set to be taken. I did my searching on aapos.org.

      This is Cincinnati Children’s ophthalmology so I’m pretty confident they wouldn’t steer us wrongly. His pediatrician 3 year well visit is in a few weeks, so I’m going to see if he’s heard anything about it.

      I just hate not being given any type of name for it and being told a year wait is necessary. I had anxiety issues before having a preemie and unfortunately putting it in the back of my mind and ignoring it won’t work for me. 😦

      Thank you for the article link!

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