Wednesday, April 10, 2013

Preemie in Preschool

When you have a preemie, you hear over and over that they catch up at 2 years.  Most doctors and parents stop doing the adjusted age at that point and from there on out your preemie is now all caught up with their peers.  Or are they?

I think that there are plenty of preemies that are all caught up.  I am sure there are some preemies that will never catch up and have disabilities all their lives.  And then I know there are preemies like mine that live in middle.  K is caught up to ahead in many things but, still has issues that are preemie.

When you see her in her preschool class, I don't think she sticks out.  Or at least doesn't stick out that much.  She is still really darn small. People are often very impressed with her vocabulary and her speech, which I will admit is impressive.  It is even more impressive to others though because I think they assume she is a 2 year old, because that is how big she is.  I seriously just stopped putting her in a few 18-24 months clothes.  And her feet, well they haven't grown in over a year, she still wears a size 6 shoe (sometimes).    I have been hoping to get her up to 30 lbs, but boy we can't seem to get anywhere near that.

Her other issues are more subtle.  Okay, most are more subtle.  The kid won't eat still.  Drives me insane.  Let me repeat, DRIVES ME INSANE.  She won't try anything, doesn't like any variety and is very opinionated about it all.  As well, she won't drink anything.  These are daily battles, that after four years have worn me out (to be honest it wore me out after a year and now I am utterly exhausted with it). I swear that I have the only child that you have to force to have juice, or try to get milkshake down her.  She still gags on her food (thank you reflux, and oral defensiveness).  She also bites her fingers a lot, which took me awhile to figure out.  Some of it is that she has sensory issues where she doesn't know or is unaware of where her fingers are but, mostly its because she has adapted to push food forward in her mouth when she is about to gag.

And not eating and drinking would be okay if it didn't make her into a grumpy and a constipated terror.  I know when she is acting out a lot, crying a ton, and just being difficult that it usually has to do with the lack of eating and or the need to get a poop out.  I've done about everything to help this situation.  I have reward charts, rules on what needs to be consumed in a day.  For a month this summer I just stopped doing everything, thinking that maybe I was creating the problem with negative attention.  She didn't poop for over two weeks, and we had some serious doctors time and work to get that all corrected.  I haven't even gone into the use of miralax, and so on that I have orchestrated to keep things moving.

As I mentioned this is her not subtle issues.  Her other issues or challenges are much more difficult to realize or see.  Most people may laugh it off or may just ask me casually about it. I have really become more away of them as I have watched her full term much younger sister develop and grow. I need to blog about some of these issues more to give them justice, but do a quick google search for sensory processing disorders, NICU syndrome,  gross motor planning issues.

She runs into everything, she falls when nothing is around her, she has a hard time still with some of the most simple containers to open.  She can't open the refrigerator.  She struggles getting dressed.  I sometimes think that she will never ride a bike or do anything that requires that much coordination.  And its gotten much better but she used to absolutely shut down in over stimulated situations.  Like if we had a big group of people over she would just go lay in her bed with the covers over her head.

Now don't get me wrong, some of these things are normal toddler.  They are just a bit amplified in her.  Also, I haven't written about all the amazing and talented things she can do.  Her cognitive ability is almost scary.  She can read at least a kindergarten level, for example you hand her a book she has never seen from the library that is marked for 1st grade and she will read about 80-90% of the words.  She corrects me all the time when I read something wrong or don't tell the truth about something.  She has a memory that is amazing.  She asks me all about the patients I see in a day.  She will quote those patients, and treatments back to me several weeks later.  And, she can be so sweet and loving.  She really enjoys making everyone cards and crafts.  She also has this funny creative imagination, just yesterday she told me she had some cats in her room that were English and needed to make it back to England.  And on and on that story went.

I write this for a few reasons.  To vent a bit, because it is hard to deal with this.  I know there are parents that have far more to deal with but all the same it is a bit of a drain and even just the worrying wears on you.  I also write it because I want to show another side of the 'all caught up by 2' saying.  We aren't all caught up, I don't know if we will ever be all caught up.  Being a 25 week under 2 lb preemie just doesn't go away. She is an amazing gifted child, and I know that we will keep working on things to help her reach her full potentional.  We've come a long way to this point and I know that we will make it even further.


  1. So interesting. As you know, Zach is somewhat in the same boat. Really cognitively gifted, but a mess in gross & fine motor (although better in gross motor than he used to be). I still adjust at times as I feel he isn't totally caught up. Will he ever be.....I don't know.

  2. Thanks Dawn, I know you would understand.

  3. (((Hugs))) you are doing a great job. I'll admit to having stopped adjusting but I do worry, especially seeing Aidan doing things I thought she should be but isn't. Or we fight her to do. I agree it is lifelong. I've tried to let it go but I'm always watching. I wonder if I'm delusional sometimes and she's really not caught up but I don't like to think about that.