Prematurity and Developmental problems

JailRN · Aug 23, 2002

Denise,

I have 2 sons with Aspergers Syndrome. This is a developmental disability-high functioning autism. In Calif, too many people want their children to be included. (That means they are in regular ed classes with assistance. They have IEP's (Individualized Education Plans) which addresses their specific problems, needs and how the school is going to solve it. Unfortunately, the schools usually end up lying to the parents, not telling them all the options available, and trying to do the least they can get away with, While, everytime he has a problem, it's bad parenting, or he needs more drugs to control him. Worst is what happens to these kids when the other kids decide they're "wierd, stupid or a bother" and the parents don't want them around their kids, because they get into trouble. Then, our son's emotions go into the toilet.

You didn't say why you chose to put the boys into public school and I DO understand the expense of private school, but if the boys didn't have these problems in a smaller, Christian school, get them out of public school before they destroy your sons.

We have done the military, Catholic, boys only, private, and public school thing with both of our sons, and the public school did destroy our older son, who's now 19. With the 8 year old, no way will the public school get their hands on him for any longer than they did. We've had behavior plans, specialists, medication, tests, EEG's special diets, I don't think there wasn't much these 2 didn't try, but in an environment where they aaren't happy,(and if they're acting out, they're not happy) they won't do well/ Good luck and let us know what happens

cna on her way · Oct 23, 2002

I am the mother of an 8 1/2 year old son with ring chromosome 18. I chose public school with a seperated classroom for Blake and we love it. He has been in a trainable level program for the past 4 years and he has done very well. I don't know where you have your children and I am sure that every state and school district are different, but as for his teachers and faculty they are wonderful with him and keep me up on every little thing that he accomplishes. I do hate that its not working out for you so far though. Oh and just to let you know his teacher doesn't like the pharmacutical approach to handling her children so that has really made a difference with the way we feel about her classroom.

prmenrs, RN · Oct 23, 2002

If you can afford it, send them back to the private school. My guess is that the small class size is less overwhelming/stimulating for them, there is more structutre and attention, which makes it much more comfortable for them and makes it easier for them to learn.

Premies have real issues with overstimulation, and that can carry through, even at this age.

kids · Oct 23, 2002

I am wondering about the prevalence of ADHD in "normal" premies (given what I "do" you would think I would know). The very limited info in your post make me wonder if it could be at least part of the problem. Kids with a 6:1 student/teacher ratio are often over looked when it comes to attention problems also if the private school they attended had a Montessori based philosophy very mild learning disabilities could be iterpeted as a being part of a childs personal "style".

I PM'd Jenny P (she may have some input) and asked her to look at your post...my brain is so fried keeping my high-tech kids breathing that I can't remeber how their brains work right now.

prmenrs, RN · Oct 23, 2002

I'd like to recommend http://www.ldonline.org as a resource for these issues. You can pose the ? on one of their BBs--either parenting an LD or parenting ADHD ones come to mind. Just because you check that site out doesn't mean that's the issue, but it has such a variety of info related to education you might find just what you need there.

Keep in touch!!

Jenny P · Oct 24, 2002

Kids-r-fun did PM me and I'm not sure how much help I can be here. Neither of my kids were premies; but as Kids-r-fun says, there is a higher prevalence of ADD, ADHD, etc. in premies (this is out of my usual nursing field, however). You have received much good advice so far, I'm not sure what I can add other than my own experiences with my kids.

Emotional liability and inability to follow directions MAY be symptoms of ADHD. I strongly urge you to have your children tested, but not through the school system. Some schools are so quick to label kids and put them on meds that I was afraid that that might happen with mine. After having them tested through our HMO's pediatric dept. I went to an independant peds psychiatrist and paid out of pocket for further evaluations. Both of my kids are ADHD, and are totally opposite from each other when you look at their personalities and behaviors.

My son still can't follow a list of 4 or more directions and probably never will! And I swear that my daughter was born with PMS! Talk about emotional liability! Many kids can learn to function in spite of ADD/ ADHD; I think that in smaller classrooms they may learn to use specific coping mechanisms that they don't learn in larger classrooms, and there are less distractions in a smaller classroom also so they can focus on the schoolwork better.

I made the mistake of taking my kids out of the small Catholic school they were in (where they both were extremely successful due to small class sizes and caring teachers) and putting them in a public school when we moved to a different school district. We "couldn't afford" the cost of private school when we moved to a different house; I totally regret it because my son got lost in the shuffle of a huge middle school and got into drugs in high school. He's 23, clean and straight now, but we had 4 years of hell with the drugs, behaviors, and his problems with the law etc. Both he and my 20 yr old daughter are still ADHD and will probably require meds for the rest of their lives. They are both successful on meds and are at least aware that they need them, but it HAS been a long hard road for all of us.

Keep us posted on what is happening with your kids; and I wish you lots of luck-- and patience!

kids · Oct 24, 2002

Thank you Jennie, you are much more articulate than I am and do a much better job of saying what I am thinking when it comes to this stuff :)

Jenny P · Oct 24, 2002

You are welcome, Kids-r-fun; I'm not much help on the premie aspect of this, but I do know what I'd do if I had a chance to do it over! If it was up to me today,my son would probably STILL be in a parochial school somewhere, LOL! He has grown up and is independant of us, lives with his girl friend, and has chosen a small technical college to study computer programming; so far he has a 4.0 GPA!. And our daughter is a sophomore in a small college and loving it (even though her grades aren't quite as good).

Denise, I forgot to mention that you are the only one who can be the best advocate for your kids. As parents, we know what our kids are capable of and what they need to succeed. It's important to know their limits-- and yours.

debralynn · Jul 15, 2003

Even though my mentally retarded son is now 20, he went to public schools since he was in the 3rd grade. He was in self-contained classrooms. Even though I had to fight for everything he got, it was overall a good experience. It was a small school which I think helped. Denise, first know what your rights are for your public school district who HAS to educate your children. That doesn't mean they have to go to your districts school, it just means if you can prove your children can not get what they need at your district, your district might still have to pay for where ever they go. You should have some type of advocacy program someone in your state that can help you with what your rights are. You need to know them frontwards and backwards or the district will try to railroad you. A lot of times, when a parent comes in to the IEP meetings and the adminst. knows she knows her rights, they won't give you too much trouble, but be prepared to fight for what is rightfully your childrens in the first place. But all this said, it is still worth it! Good luck!

MarthaJ · Dec 9, 2003

There are studies that have the prevalence of ADHD as high as ten percent in premature infants. I personally think that the brain developing in the NICU has alot to do with this. I'm a big believer in both medication and behavior modification to help each child meet his/her optimal potential.

I work in a developmental clinic that follows high risk infants after discharge from the NICU.

Martha

crankyasanoldma · Feb 23, 2004

Hi,

I'm coming late to this conversation but wanted to add my .02 cents.

My son is an x 23.5 weeker who is now in kindy and has been recently diagnosed as having Asperger's Syndrome. He had 5 private annual neurodevelopmental exams that were 'normal' (after having been deemed 'caught up' at three). He had a relatively easy NICU course with only minimal eye damage, no bleed or NEC.

He was only in K for a week when the teacher began to recommend evaluation for behaviour or LD's. I was hoping to not have (but prepared for) a diagnosis of some kind of LD once he started school. I was not expecting Asperger's. Reviewing the literature, I can see that he does indeed have Asperger traits- and I thought he was just quirky- like his parents!

I have collected much information about preemies and outcomes. The biggest study recently was done by Maureen Hack. Here is a link to a recent article by her : http://www.futureofchildren.org/information2826/information_show.htm?

doc_id=79895

Most of the stuff I have is about very early preemies like mine. Let me know what you are looking for and maybe I can help locate it.