Parents of older preemies (preschoolish +)

Cara03 · October 2013

I came across what parents are calling "Preemie Syndrome" while searching for something to match symptoms/traits I am seeing in my 24 weeker who's now almost 4 years old. https://www.astridvanwoerkom.com/en/preemie/preemiesyndrome.html

I am amazed that it seems to fit DS so well. We've talked to doctors about some concerns (nothing major, but enough that it seems to warrant some attention to help him be more happy and functional in life). No diagnoses. Too old for early intervention & didn't qualify for early childhood program. Doesn't seem to quite fit autism or sensory processing, etc...but it does seem to totally fit with "preemie syndrome."

Any experience with this? Does any of this seem to fit for your preemies? If so, how do you go about getting therapies/resources/etc without having a medically recognized diagnosis?

TIA... we have some amazing kids and they all deserve the help needed to allow them to flourish!

meldoo2002 · October 2013

Interesting. I wouldn't say it fits our kiddos. Our current issues are partly related to their prematurity (asthma) and partly not (epilepsy). And then of course we may be facing ADHD diagnoses eventually, but for the rest of it they are caught up in most areas.

punky917 · October 2013

After reading that I am really glad that DS is in his 3rd year of preschool. He did not go through early intervention, but we paid for him to be in private preschools. We had concerns mostly about social interactions since he was our only child and we don't really have friends in the area with the same age kids. We put him in preschool at 3 and 4 years of age. After thinking about it, we put him in a 5 year old preschool program instead of kindergarten since his original due date was the end of Sept. He has grown so much that I feel much better about sending him to kindergarten next fall.

He has lost vision in his right eye due to ROP. He definitely has fine motor issues from this as far as cutting, but his writing and coloring are more age appropriate. We plan on making sure he has a 504 Plan before kindergarten to make sure that he has all the accommodations that he needs to help him be successful in the classroom.

Cara03 · October 2013

Meldoo & punky, thx for sharing your experiences. Punky, what is a 504 plan? I only know of IEPs for school accomodatons but DS doesn't qualify, so I'm struggling with how to get him accomodations that he needs. Also, when you mention social concerns, how does your DS do with other kids? My DS does not like other kids, despite play groups, library & childrens museum porgrams, and now starting preschool. I don't know if he just needs more experience & adjustment time with kids or he is just never going to like other kids... ? Thanks!!! It is so nice knowing we are not in this alone.

Cara03 · October 2013

One more question: anyone know of other boards, listserves, support groups, etc, more targetted at older preemies?

brachysira · October 2013

I do not have an older preemie, but I have been reading a ton of blogs written by parents of preemies that are starting school. I would start with "Logan's Sisters" and follow links to other blogs from there. Some of these blogs talk about getting insurance to pay for things and many discuss negotiating for therapies with medical people and schools. You may be able to get connected there, or at least pointed to some online groups. I don't know exactly what is going on, but a common thread among these bloggers is that they really end up advocating a lot for their children when they get past the infant stage and start interacting in group situations, and you might have to see a developmental pedi or psychologist or similar in order to get some diagnoses you can actually use before you accept that this isn't going to happen.

Cara03 · November 2013

Thanks for the leads, brachysira!

punky917 · November 2013

@Cara03 a 504 Plan is basically accommodations a school will provide to "level the playing field" for a student. So if a student has longer processing time, an accommodation that could be written for him/her would be providing 50% additional time to finish assignments or tests. Boston is right that is not as legally binding like an IEP (unfortunately). This is where it is very important that the school that our kids go to is a good one. I am a special ed teacher and I know that even some of the teachers that I work with feel like they don't feel they need to follow accommodations even when written in my student's IEPs simply because they feel like it is giving the student an edge over their peers which is not the case. If I know my student can do something without accommodations, I don't write it in their IEP!

In our school, a 504 is written after solid data has been gathered to support why accommodations are needed. Then a team gets together and talk about what needs to be provided for the student to be successful in the classroom. But since your LO is not in school yet, maybe talk with your pedi about your concerns and he/she would know what direction to point you to next. In our case, Noah's ophthalmologist is the one who initiated the contact with the agency which provide supports for students in schools. So the person is going to visit with Noah at his next eye appointment to see what accommodations would be helpful to him. That person will also communicate with the school district we are planning on sending him to next fall. I have heard great things about the school district, so I am hoping that providing him with what he needs isn't something that they just brush off.

Sorry this is so long-I hope it helps! If you have any more questions, feel free to ask me!

Parents of older preemies (preschoolish +)

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