Consider. My. Mind. Officially. Blown.

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My baby 3 days old

I’m starting off with a warning. This post is me processing the information that I have literally just read. Usually, I like to sit on things for awhile and let them digest and then blog later. It helps me to not be all over the place and to organize my thoughts so that I don’t sound like a ranting lunatic that is incapable of seeing the silver lining. That is a big part of who I am as a person -or at least I like to think so- the one that can take any catastrophic situation and find the good in it. Life is too short to spend it wallowing in regret or being angry at the world for turning.

See? I’m already babbling. But you were warned.

The last therapy session that we attended, Dana and I were discussing the semantics of Jp’s “lack of disorder”. He wouldn’t classify as Autistic anymore since he uses imaginative play. He still has tactile issues and sensory moments, has a receptive language delay, and doesn’t appear to socially be developing as his peers do. But the pretend play, or more accurately a lack of it, is a huge defining characteristic of Autism. I wouldn’t trade his imagination for all of the tea in China though she cautioned that at a certain age -with no diagnosis- he will begin to be ineligible for services even if he still requires them.

So I went on a search. I remembered that he had an abnormal CT scan in the NICU that, at the time, they assured me was utterly and completely normal. It was nothing to worry about. In fact, the doctor told me that his own child had the same abnormality and she was a senior in college. I was placated. I blindly trust medical professionals most of the time as I didn’t attend medical school so what do I know? Though in light of everything that is going on I decided that maybe he was wrong and I began doing some research of my own on it to see if it could be a reason to go and have a new CT done.

What I found both shocked and comforted me simultaneously.

Most of my mom friends on here are parenting children with difficulties (for some reason I avoid the word disabilities since I like to think they are able to do anything, it just is a little more difficult) and they know what it feels like to think that something “just wasn’t right” and to look at a list of symptoms and say, “Yep, yep, yep, oh my goodness, yep.”. I have never had that moment. When Autism was first on the table I couldn’t help that think that the puzzle pieces didn’t quite fit (pun intended). They could if you forced them but there were so many glaring differences. I never had that ‘aha!’ moment…

…Until now.

What I found was not so much a syndrome but a phenomenon that has been coined, “Preemie Syndrome”. Jp crash landed into this world at 31 weeks via emergency C-section. The term was developed to label preemies that fall into categories of delay but may or may not meet all of the diagnostic criteria. It seems that the statistics show (about 52% and more likely occurring in males) that preemies can develop abnormal brain functions which result in developmental delays that fit Jp’s issues EXACTLY. The clumsiness, the tactile food issues, the sleep problems, the behavior issues. All of it. The article stated that many children have the traits of autism but “aren’t quite typical of children with that label”. Are you talking to me specifically, article? It was like a light went off in my brain. His prematurity, of course! He skipped an entire trimester of development in utero, it would only make sense to me but I have asked a million times of a million different professionals and no one ever told me this was an issue.

Let that sink in.

No one ever sat me down and told me that that level of prematurity could cause serious developmental delays. Not only did they not tell me, even when I asked specifically (do I strike you as the ‘beat around the bush’ type?) they repeatedly assured me that all preemies ‘catch up’ and that everything would be fine. He may meet his milestones a bit later than his peers but, other than that, not to worry. His pediatrician kept telling me how wonderful he was doing for his situation, what a rock star he was, how lucky I was…no one ever thought to tell me that the effects could show up much later. And that is exactly what the article said-that past the age of 2 when people stop “adjusting” the bar for preemies is when the symptoms start, typically with a speech delay. The autistic traits are “mild” and don’t typically fit diagnostic criteria for the disorder though they still struggle with socialization and standard social cues amongst other things.

That’s my Jpeezy almost to a T.

It was comforting to find where my atypical son “fits in”. It may sound crazy to someone that can’t identify with a child having developmental delays to think you would want your child to be different. Although it’s not that you want them to be different, they just are and it’s maddening, in a way, to know that your child is having issues but to have everyone around you act as though you are just being “negative”. Do I see his progress and relish in every victory as though it were my own? Yes, yes, and yes. Does that mean I still don’t see the places in his development that are odd? No. I still see them and am waiting on pins and needles for him to “outgrow” them like he did the lining up of objects or the eye contact aversion. Maybe see him eat a vegetable every now and again.

That in no way means that I am not so proud of him that I could burst.

In a way, I think sometimes I am more proud than a neurotypical parent. I know what a success every sentence is for him. When he approaches a child on the playground and says, “Hi!”, I know how much that means. Even if he does hightail it back to me right after, I know that he knows that is what you are supposed to do. He’s trying, even when he feels uncomfortable talking in front of other children, because we work on it constantly. He’s doing so well that I don’t want to even see the differences anymore. But that doesn’t mean that I will become one of those parents that is blind to them -intentionally- and wants their child to be “like everyone else”. No sir, not me. I see my child, flawed and perfect, and I love him just the way that he is.

Then comes the downside to the article.

Since Jp obviously doesn’t fit neatly into a diagnostic box, it will be harder to get him the services that he needs. Preemie Syndrome is not an actual diagnosis and without a label, insurance will be less likely to cover things such as in-school therapies if needed. There is always a downside. This one I can live with. I’m a fighter. I will stand toe to toe with anyone that comes between my Jpeezy and anything that will better his situation. I will sit on hold, stand in offices, write letters to the editor, write the media if I have to.

I will stand and fight for my son. I won’t let some medical professional placate me again.

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Thanks for letting me get that off of my chest! Also, if you are interested in reading the original article that rocked my world into this rant here it is: http://www.prematurity.org/research/not-catchingup2.html

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Childhood Development Parenting Parenting and Childhood Development

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Amber Perea View All →

I'm just living minute to minute, hour to hour, day to day.

22 Comments Leave a comment

    • I know! Especially since everyone kept acting like I was crazy for asking so much. Even my SLP just dismissed it with, “Yeah, autism is more prominent in preemies.”. But never stopped to explain why!

  1. I can relate a little. My 4 year old had major issues with food as a baby. I could get no help from medical professionals. So, I started digging on my own, and found that he had a rare disorder (later confirmed by a doc) called FPIES. It was such a comfort to me to be able to identify in real terms what was happening with him when he didn’t fit into a normal food allergy box. Anyway, kudos to you for finding it! Mamas are good like that. 😉

    • Doesn’t it feel good to finally know that you aren’t crazy? I’m sorry to hear about the rare food allergy, though. Mammas are good like that because we don’t take no for an answer. We would lay down and die for our families so what’s a little (or a lot) of research in the grand scheme of things we would do for our loved ones?

  2. Three out of four of the kids on our farm (between my brother and I) were preemies. Oldest was 2 months early and has always had eating issues. Mine were 4 weeks and 6 weeks early, and had no prenatal care, terrible general health of bio mom (I adopted!). Both of mine are parallel stories to your Jp.

    • Wow, it’s such a comfort to know that there are other moms like me out there.

      As a side note- as I was reading that, I was wondering, “Why didn’t you have prenatal care?” Lol

      Kudos to you on adopting! There are so many wonderful and deserving children out there!

      • My two are full siblings, and I was there for the seven months of “dude’s” pregnancy, wanting to scream at the 5 foot tall maybe 75 pound woman who just didn’t get it. It was hard, to risk through foster care taking some in, and losing them, but my munchkins seem worth it! 😉

  3. I understand completely when you say it is is comforting to find where your atypical son “fits in”. It’s not that you want your child to be different and in a way knowing why he has the challenges he has makes him less different and brings more hope.
    Glad to hear of the progress JP is making.

  4. I’m pretty new to your blog, didn’t realize that Jp was a preemie. I was on bedrest from 23 weeks with my first child because my OB feared I was going to deliver early (I didn’t). But I still occasionally pop onto message boards for preemie parents and some of the issues you describe seem to be pretty common with preemies. Best of luck with moving forward.

    • Thank you for following! Yes, I think I only wrote one post ages ago about his prematurity. Mostly since all of the medical professionals that we see (including a pediatrician I am considering replacing at this point) kept telling me that it had nothing to do with his issues. That if it was, it was because autism is more prominent in preemies. Never once did anyone even agree that MAYBE it was the issue.

      I wish I had been on the preemie boards! I never did because Jp was just about the healthiest and luckiest preemie out there. I never felt to need to reach out simply because it wasn’t something that I had to “cope” with. As you can see from the recent discovery…I didn’t even do that much research on the aftereffects of being a preemie. Stupid me! Is there a particular site that I should check out? I would love to exchange information with other moms in my position and see how they handled the diagnostic issue!

      Thank you for taking the time to read and comment! It truly means so much!

      • Bliss.org.uk and sidelines.org were the message boards I used to check out. The first is UK based (can’t remember where you live) so some of the info might not be relevant in terms of where to seek help. I just signed into Sidelines.org but their message boards were cleared in August and the forums are really inactive now so I wouldn’t even bother with that one.

  5. Hey Amber, I know somebody else asked you at some point about getting JP evaluated by an occupational therapist. If you can get your insurance to cover it, it might not be a bad idea between the fact he is clumsy, has some delays and has some sensory issues. I think some of the OT stuff is a little loopy, but a lot of it is good stuff.

    In any case, have you made it over to Pinterest yet? If so, just searching for speech therapy, fine motor, or preschool will give you a TON of stuff to do. (But you’re always welcome to stock my blog as well) :).

    Blessings,
    Alyson

    P.S. Do you know what kind of abnormality showed up on JPs CT scan? Did he ever have a MRI? (My 9-year-old has a brain malformation called Chiari, so I was just curious.)

    • Actually, that was part of my research. I can’t remember now and couldn’t pronounce it then. I remember having them write it down for me and it was 14 or 15 letters long. I requested a copy of his medical records from the hospital but that takes weeks.

      I’m not a patient soul so I tried finding common abnormalities in preemies but couldn’t find anything…and I am a research master. So I’m back to waiting.

      And I attempted Pinterest but I am new and working it is confusing. I haven’t really sat down and tried though, though I keep meaning to! 🙂

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