Sunday, August 19, 2007

How Much Do You Tell?

This was part of my last post but I felt it needed one of its own...

One aspect of having a preemie that I have given a lot of thought to over the years, is not knowing how much history to give to certain people.

Giving a complete history to a new doc/specialist is a no brainer.

But, what about school forms?

The classroom teacher?

The piano teacher?

Parent of her friend?


Strangers who inquire about her size/behavior/distinct look?

I know my feelings on this subject are colored by the past. But I am still left wondering... "Who needs to know what?" Will she be judged differently if they know she is a former preemie? Will she be judged unfairly (behavior wise) if I don't tell them she is a former preemie. If they know she is a preemie, when she acts differently, will they be more understanding? Will that "understanding" take the form of allowing her to get away with negative behavior? If they know her history, will they not challenge her as much as the next child?

Thoughts anyone?


Anonymous said...

I know what you mean! My 25 weeker just turned 3, actual age. He is super intelligent, but emotionally still a baby. If I tell them he's 2, they look at him and say how huge he is ( he isn't, but hey, whatever.) If I say he is 3, they think he is immature and should not be behaving like a baby.

He just started school in the Early Intervention program in the school system and he is so small and the youngest child in the entire school, so I also worry about other children pushing him around. His teacher obviously knows his entire story, and his ped and neuro and PT and OT.

But what is the right spin for others? Even family members who still don't get it? (I used to get so tired of the phone calls while he was in NICU asking how big he is and is he ready to come home yet. Those members just know the short and sweet version of his ordeal and think he has grown out of the preemie label.

Since I am fairly new at this whole thing, I am interested to know what others feel is the correct amount of information.

Helen Harrison said...

An awkward situation I frequently encounter involves taking Ed somewhere in public (he's 31 years old), and he has to go to the bathroom.

I get a terrible shock reaction if I simply bring him into the ladies' room unannounced, but if I say something along the lines of: "Don't worry, my son is retarded and, for all intents and purposes, blind," I get an even worse shock reaction.

Anonymous said...

I can only give you the perspective from the classroom teacher. My personal preference is to let me have a chance to get to know the child first in the context of my classroom. In my case, I like about 2 weeks. By that time, I have a lot of the students figured out as far as names and general needs within the classroom. Any earlier and I'm struggling to put the all the information together with the mountains of details that come with the beginning of the school year.

One of my favorite approaches used by parents of my students is to put together a packet of information for each teacher the student sees during the day as well as the administration. They start with a cover letter introducing themselves and giving an overview of the family situation including health problems of their child. It is best to ask for concrete adaptations such as "Because of her poor vision in her right eye, please seat Meghan in the front of the classroom to the left side..." That is something I can do easily. Prioritize the list and pick only the most important things you want the teacher to do.
At the end of the letter, let the teacher know the best way to get a hold of you (cell, e mail) if she/he has questions.

Parents have also enclosed several current articles about the child's condition in general and then working with children who have that condition in a classroom setting. In your case, this may validate some of your requests as well as educate a teacher about what your daughter is dealing with.

As for the other adults in her life - I don't know where to draw the line. Best wishes

medrecgal said...

Wow...a familiar dilemma, indeed! Sometimes it can be hard to tailor your explanation to context, but of course not all situations call for telling the story in all its entirety. It's really an art form, in my experience, learned over time.

There were times when I was a teenager when it would seem to me like my mother was so flippant when talking about my history that it annoyed me to no end. But these days, still having to discuss it owing to things like curious physicians and the ongoing tangles with my NLD, I tend to be very no-nonsense about it. Give them the information they need without being overly dramatic about it, is my theory. Give them the nuts & bolts without all the emotional baggage or too much jargon. Put it in layman's terms, as: "She has X problem, which will affect her ability to do Y." or "She has X in her history, which is why Y behavior might happen." Tough to do, I know. I've had plenty of experience explaining about the origins of the shunt, and the likely connection to NLD as well. For me it's now basically a case of, "Well, this is what happened and this is the end result of it." No drama or trauma, really. It took me an awfully long time to get there, however; there was a period of time in high school when I was so totally traumatized by what those idiots did to me, I couldn't even say any of the related words without cringing.

Frame it in such a way that your daughter learns to take her history in stride, in a way that others get the information they need without getting so much their understanding is overwhelmed. Easier said than done, I know!

Your daughter isn't the problem; it's society's general inability to properly interact with those of us who have disabilities. If you can help her understand that, you will have done your child a great service!

chris and Vic said...

When a parent faces off with this question, s/he may learn that they are still quite traumatized by their child's disabilties. I think this is often evident in the need to spill one's guts, to retell the story, giving colorful detail. To me this means that we aren't over it. And I think some listeners say "Whoa!" meaning TMI (too much information).

Teachers want to know basics. Others may need only "nuts and bolts," practical info related to practicalities. How to get things done. Concrete.

Flash!!! There may be very few who want to know our familiy's emotional response to our kids' issues, or how hard daily life can be.

To the classroom teacher who wrote, I wonder if she struggles getting to know our kids who are not neurotypical (it may be a confounding experience, full of seeming contradictions); and I wonder that she doesn't want a short-cut--that is, a concise history, early on. I, myself, would want to know ahead of time in order to feel prepared on the first days and weeks of school.

I sympathize with the bathroom experiences that Helen has with Ed. I have the same experiences taking my son into the ladies bathroom. I don't explain anything to anyone, except to say, "Pardon us".

Vic is going to middle school in a few weeks. We asked his special ed teacher if she read his history from his previous school, and she said "Yes" so we have not gone into much detail. On the day that we visited the classroom-in-session, we asked where the bathroom was, saying Vic would need to be told to go every 2 hours, and would need to be monitored to wash his hands afterwards. We asked in the IEP for Vic to be supervised in the cafeteria because he puts too much food in his mouth and doesn't chew adequately, and frequently seems to be choking. Safety issue, goes to the head of the line. Etc. I think this is what the anonymous teacher and medrecgal mean when they say make a list of practical items . . .

I like the idea of a letter of introduction and a "packet" of information, proposed by anonymous teacher. In our school district, there is a "care plan" for health conditions. I think behavioral issues should come under this rubric, as well. Maybe there should be several copies of letter-packet-care-plan, for the school nurse, for the administration, for the classroom teacher?
Chris and Vic

Helen Harrison said...

to medrecgal who wrote:

"Your daughter isn't the problem; it's society's general inability to properly interact with those of us who have disabilities"

I've never looked at it this way with my own child, but instead felt that my son had brain problems (secondary to prematurity) that made him unable to interact properly with society (or with individuals.)

I see "society" doing what it can under very difficult circumstances: the recent tidal wave of severely disabled children from NICUs,the constraints of all-too-many unfunded mandates, etc.

There is, of course, a powerful segment of society that loudly objects to the increased taxes that could fund services for children and adults with disabilities...

Jennifer said...

My parents are very familiar with preemies having had a 30 and 32 weeker. There was no 'weight' given to children who were a preemie then (late 1970s, early 1980s).

In the case of school I think it was beneficial to us. Seeing that we were not 'on par' with our peers (me especially being the earlier preemie) emotionally the school demanded we be kept behind a year. Had weight been given to the fact that we were born prematurely may have made them second guess that decision and severely affected my brother and mine's education.

My parents dropped the preemie label after age 3 or so and even now don't look at my daughter (who was born even younger than I was!) as a preemie.

Its an odd turn to that point of view.

My parents had no Early Intervention so they never worried about us. I didn't walk until 19 months actual and was only 15 lbs. at one year old. Yet I was freaking out that my daughter (who is medicated for her reflux where I was not) was 17 lbs. at one year and wasn't walking at 16 months actual.

It makes me wonder what the fine line is?

By all accounts my daughter is doing wonderfully. I took her for a PT evaluation last week due to her gross motor delay and was told by the therapist that my daughter is doing amazingly well for a 28 weeker. Ya... but then you get inundated with information from EI and other medically motivated sources that say there will be problems. For instance, my daughter opthomologist has me terrified that my daughter will develop an eye turn. I had a SEVERE eye turn at 11 months old, yet my daughter shows no sign of it thus far... but I still check every day and worry about how to keep glasses on a toddler...

Sometimes ignorance is bliss and personally I think giving all the information can be a bad thing especially when in the grand scheme of things... its doesn't matter. Hopefully teachers will understand that all children are unique and adding a 'ex-preemie' label may not be necessary, what benefit will it add? Understanding because s/he doesn't fit in? You don't need an 'ex-preemie' label for that.

Personally I didn't know what a big deal being a preemie was until I had my own and I'm starting to see its not the big deal I turned it into and I hope I can continue down that path as she gets older.

Just last night I took her for pictures at Sears and the photographer was 7 months pregnant... I was holding Arianna's hands to walk her to the spot to take the photos and the photographer made a comment about how close she was to walking and all I could say was "well... she was a preemie born at 28 weeks which you must be right about now".

I hate that I use it as an 'excuse' now... I hope that she won't use it as a crutch and I'd be afraid that I'd present the opportunity if I told EVERYONE about it...KWIM?

medrecgal said...


It is the interaction of both that is the problem, in my experience. You can look at it in both directions: yes, the individual has a given problem or constellation of issues that originate out of some situation involving the brain/body; society also poses a problem by its general inflexibility and unwillingness (or inability) to handle whatever the individual's problems are. There are no easy or cheap solutions to this dilemma; but we can still work on the underlying attitudes that encourage stagnation in an obviously broken system. Those vocal people you describe who complain about increases in taxes to fund services for those with disabilities: some part of me says they need to be beaten down and gagged. (I'm only half-joking here; I know it wouldn't help, but I also know that it can be like pulling teeth to gain access to appropriate services.) Perhaps my perspective has been a bit warped by many years of dealing with the disability bureaucracy. Still there, still bonkers as ever.
(That would actually be one of the perspectives I could easily cover if I did write that book.)

Helen Harrison said...

To medrecgal:

Do you know of any workable systems serving people with disabilities that could serve as models?

How would you change the current system based on your experiences?

Future of Hope said...

My opinion is that I share only what is relevant to the situation. With my son some things are obvious- it is kind of hard to hide a big red wheelchair, for instance. Most people see the wheechair and want to know why. We keep that answer simple, either he or I will answer that he has Cerebral Palsy. If that is met with a why? then I will add that he was a 26 week preemie. I do not use the "preemie" tag as a descriptive, because he is not a preemie any longer, anymore than he is a newborn or a toddler. This is about all of the information that I will provide to anyone that is not going to be directly physically responsible for my child.

As far as school goes, if they are permanent record forms, or nurses office forms,then I fill out a complete but abbreviated history. The school has no need to know his gestational age at birth, apgars, NICU complications, etc. The do not need to know every grueling step that we have taken over the years to get him to his current level of function. They DO need to know all current DX's, all current meds and therapies. For the classroom teacher - the information is in the files if he/she wants to know things before the start of the year, but the only advance information that I provide is concrete and physical (desk layout, making sure that the room is arranged with adaquate driving room etc.) For everything else I think it is important for the teacher to meet my child and form his/her own ideas before he/she gets the info from me. After about 2 - 3 weeks, then I get together with the teacher and we have a meeting of the minds. This is much more productive than if I went in at the beginning with a laundry list of dx's and quirks that need to be addressed.

Anonymous said...

The teachers have already been commented on. I have some experience being that mom of a friend....

As the mom of a friend, I can tell you I certainly don't know and don't need to know everything about my daughter's pal's background, but a little bit helped. I was able to soothe things over and encourage my daughter to stick it out when her new friend never looked at her and was not always appropriate in her interactions. My daughter would say, "I tell her something, and it's like she doesn't hear me...." Just a sentence "she has ADHD and some other problems..." helped me guide my daughter with the friendship in a situation where I was not responsible for correcting this child's behavior but simply nurturing. They did become good friends, and the little girl was very attached to me as well. I never needed to know much of her background to welcome her into our lives. Whatever the issues were (and I do know early to mid 30 week prematurity was one of them) her parents obviously had their hands full and were working very hard with her.


medrecgal said...


None of the systems I've personally worked with are fully "workable", IMHO. Part of the problem is that services for people with disabilities are a patchwork of disconnected local, national, and governmental agencies. There is an awful lot of bureaucracy involved, and sometimes attitudes interfere, too. It's a matter of extremes, too; you're either "too disabled" to be helped, or "not disabled enough" to meet the criteria for services. There's a lot of filtering and need for excessive documentation and general inertia.

OTOH, I've also had experiences where they've said things like, "You're so totally impaired that there's no way we can help"...and I've had to fight tooth and nail to prove that this wasn't necessarily the case. What a disability looks like on paper doesn't necessarily tell you how it is in real life. I could write an entire volume on my experience with vocational rehab alone. The system needs a total overhaul IMHO. I actually had one person suggest I should go back to school and get the necessary degree to jump over the desk and get into that system myself from the other side. I think sometimes they become so completely focused on a person's disabilities that they see nothing but. (It's kind of a relative to when you hear physicians talk about "the appy in room 204", turning a person into their condition(s).) This is just a starting point...I could say plenty.

Helen Harrison said...

To medrecgal:

What services do you feel you need that you aren't getting?

medrecgal said...


It's not so much a case of not getting needed services per se, it's that the ones I do encounter often don't know quite how to help my situation. It's taken me more than a decade to educate them enough about my particular disability to reach a place where I stand a chance of getting the necessary help so I can manage to hold down a job commensurate with my education and intelligence. I think part of that is the structural problem I described earlier, and the other part is just the nature of the beast. (NLD is something so unusual to them that they don't understand it.) There have been many occasions when I've just about had to fall apart in attempting something before they realized I needed help. (E.g., school, driving, the job...) I think that's a byproduct of how these systems are often so used to people with certain types of disabilities that are usually more obvious, and more traditionally thought of as disabilities.

The other factor is one I heard described by a manager just moments before she let me go because they "couldn't handle it", usually stated as some form of, "Well, you're obviously highly intelligent, what's the problem?" That's the "intersection" I'm talking about, in the sense that sometimes it can be both the disability and the system having a clash that results in even more problems. Those are the times when I dream of finding some means of explaining my situation in a way that's concise and understandable without resulting in a "well, we can't handle that" sort of reaction. I've had warped fantasies of being able to literally pull out the shunt and say, "See, this is where it all started, and it's NOT an attitude problem...but we can work with it!" That's how frustrating it can become at times. They either think you're too bright to have the kind of problems they see, or they think you're beyond help. This is not an indictment of the disability system as much as it is of the world in general. Like one of my job counselors once said, "They just DON'T get it." They talk like you're either making it up or like it's so bad it's beyond help. All I'm looking for is the middle ground, which apparently is hard to come by. I WILL, however, find some way to make this work!

Helen Harrison said...

To medrecgal:

What were/are your problems with driving? Do you have vision problems? Or visual-motor problems?

Do you have a license, now?

What kind of special working conditions do you think employers should establish to help you do the work they need to have done?

Carla said...

I'll definately have to agree with Medrecgal: "what a disability looks like on paper doesn't necessarily tell you how it is in real life."
My son has the C.P., MR, legally blind diagnosis; so people automatically think he should be vegged out siting in a wheelchair unresponsive to the world. This is not the case. He can walk, only needs a wheelchair for long distances. He does understand a lot of what you say to him; although he can only communicate yes/no, more/all done. He can see at least 3 feet in front of him.

We had the "most pleasant"--note sarcasm-- experience of visiting the ER twice in the past week. (He just had an incarcerated? hernia that ultimately needed to be repaired.) Both visits were in the middle of the night so we both weren't in the best of moods. The first visit to the Chlidren's hospital ER was after first going to the local hospital (didn't realize how serious it was), then going by an ambulance that broke down on the highway and having to switch ambulances, finally getting there about 2 hours later at 2:30 in the morning. So I guess I was just a little caught off guard when after explaining symptoms, previous diagnoses, etc. that both the resident and her boss wanted to know what his "baseline" was.(Jacob was passed out asleep at the time being it was a long ambulance ride and the middle of the night.)
"Is this how he usually is?"
I was about to say do you want to know HOW retarded he is? but just said he can walk, cannot talk, but does understand and likes to squeal. To which the doctor said OK Jacob get up and squeal and was disapointed when he didn't comply. To which I said it's 3:oo in the morning, he's had a rough day and is pretty tired, give him a break.
----Most of you probably think I should be prepared for questions like this, but I have not ever heard this term used before.--
What does a hernia have to do with how well his brain functions? I already told them that he was extra tired, irritable, i.e. sleeping/screaming all night.

As far as how much others know about him, I give it out on a need to know basis. The little girl at Walmart who says to her mom "what's wrong with him, is his leg broken?" I just say no, he's OK, he just has cerebral palsy and his leg doesn't work very good. To the guy we meet walking his dog who says "what's wrong with him?" I cringe, bite my tongue and simply say he has CP. To the neighbors we meet I start off simply saying he was a preemie, and now is developmentally disabled, has CP, etc. I explain further if they ask questions.

Obviously, his primary doctors, therapists, and teachers know his whole story. He is going to "the big kids building" at his school and getting new teachers and therapists so I am a little worried about logistics (the little stuff).

P.S. Helen, I can totally relate to the bathroom experience and look forward to announcing the same exact thing when we enter the bathroom in the future (and waiting for the gasps).

medrecgal said...


Most of the controversy over driving stemmed originally from the visual/motor and visual perceptual problems that are part and parcel of NLD. I do happen to coincidentally have a form of strabismus, but it is such that both eyes retain normal visual acuity, and it has NO effect on my driving ability. (It is purely a cosmetic problem having no bearing on my cognitive situation.) Part of their hang-up was that I have almost no sense of direction; that is part of the visual/spatial perceptual "glitch" also, and doesn't have a direct effect on driving, either. Like I said to them, I may not know exactly where I'm going, but that doesn't mean I should be denied the chance to try and get there!

I did finally manage to untangle the mess enough to get a license; what it took was an experienced instructor who was able to talk me through the necessary motor sequences for driving and who had enough patience to see the process through. I've been driving for more than 9 years with a clean record. I have NO points on my license and have seen far worse driving at the hands of supposedly "normal" people. What was interesting was the instructor's reaction when we realized I had passed the road test on the first try: "I was a skeptic; I didn't think you could pull it off after the story I heard from your vocational rehab counselor...". The difference between him and some other people who'd been involved was that he didn't make the automatic assumption that I didn't have the "necessary cognitive skills" to drive. By the time I ran into this guy, I had a bachelor's degree, after all!

medrecgal said...


Here's the second part of my answer, regarding the job situation: What we've established is that what I need is TIME. I.e., some way to extend the usual learning curve in a new job situation because I can't have everything thrown at me all at once and be expected to retain any of it. My retention is somewhat slower, but it works. Once it's there, it's retained forever. Also there has to be more concern with quality standards than quantity; I can DO it, it just takes a bit longer. I also need a situation where I can learn the various parts of a job as parts and not as a whole mess of new stuff; I can do different things, just not all at the same time, constantly flipping between different tasks. I need to break up a day into doing each part of a job separately (like for instance, spending part of my day filing, another part coding, another part dealing with release of information... the usual stuff part of medical records, just not all thrown together). Constant switching between tasks leads to nothing but sensory and cognitive overload and frustration.

I also need a heads-up; I can't just be expected to "know" what is supposed to be done when there are any of several possible tasks to be covered. I need a bit of direction, which is often not given because they think you should already know this kind of stuff. Unfortunately my brain doesn't work that way.

Helen Harrison said...

To Carla:

My brother, his wife, and two young NT children (both under age of 3) are visiting, and we just went, with 31-year-old Ed, our autistic preemie son, to a local park.

The park is arranged on several hillside levels -- a small children's park at the top, an intermediate park below.

We were in the lower intermediate park when a family arrived at the upper park. They had an autistic son (about 10) who did nothing but throw sand down the hill and make loud noises.

Ed (also autistic) noticed the boy first and immediately wanted to go home. Despite the fact that Ed is autistic (or, perhaps, because of it), he *hates* the noises other autistic children/adults make -- this is one reason the idea of ever putting him in a group home is totally abhorent to us.

Anyhow, Ed and I left, and passed the other family who were, by then, on the way down to the intermediate park. They could see Ed was disabled, and we all exchanged sympathetic, knowing glances.

But my SIL later told me that when the family came down to the intermediate section of the park, our nephew Danny(age 2), listened to the boy's cries for a moment and then asked (loudly), "Mom, is that boy a baby?"

SIL (as quietly as possible) explained, "No Danny, his brain is different, just like cousin Ed's."

Danny said, "No! Cousin Ed can talk!" (well, sort of -- cousin Ed has told Danny, in no uncertain terms, to stay away from his toys!)

Then, Danny started following the boy around the park and imitating his cries. SIL had to bring him home to prevent further embarrassment.

I really don't know what the answer is to these situations.

We are also recently back from a very long hospital stay with Ed.
Over and over, we were asked the same questions the doctor asked you and your son. Everyone wanted to know, and test, Ed's "baseline," often at the most inappropriate moments.

Some of the staff caught on quickly with a bit of coaching, but others just didn't, and I can't hold their cluelessness against them any more than I can hold it against my nephew Danny that he was bewildered and intrigued by the autistic boy in the park.

We just have to keep the explanations coming and keep our sense of humor and perspective as intact as possible under *very* trying circumstances.

I wish you good luck in the ladies' rooms! This has proved to be a major, and sometimes fraught, intersection between our family and the NT community.

Helen Harrison said...

To medrecgal:

Do you tell prospective employers about what you will need in order to do the job? Do you tell them about the NLD and shunt? If so, how do they react?

medrecgal said...


Regarding potential employers, the usual answer to that would be no. But...that is what resulted in that nasty firing a couple of summers ago that I want to prevent any repeats of. So...I've been forced to take this on in a different way that will result in their knowing at least that I have some sort of disability. (Not necessarily the specifics, but enough for them to understand what sort of accommodations I would need to stand a chance of holding onto a job.)

That former manager and the higher ups all said something like, "You need to be up front about your disability." That idea was totally distasteful, because I was always of the thought that focusing on the problems was completely backwards. But now that I see how it will work, it's not so bad; I'll get the help I need via supported employment, and they'll understand what the deal is so I won't get fired again for not "getting it" quickly enough.

Chris and Vic said...

Here's the trick--telling enough to get the supports you need; holding back enough so that you don't prejudice your employer or your child's teacher (thus encouraging a no-use-trying or an I-give-up-before-I-start attitude).

I have just done an extensive (perhaps too extensive) letter of introduction to disclose and discuss Vic's issues to his new school. I used these sub-headings:
Home, Family & Background, Health and Safety, Sensory, Learning Style, Therapies, and Miscellaneous. I don't elaborate on what is in the IEP--I just say "See IEP"--and I don't elaborate on what is in the 2 care plans, on for asthma and one for hydrocephalus.

Has anyone else prepared such a letter for the beginning of the school year? If so, what did you include/exclude?

Chris and Vic

Carla said...

Helen, I'm thinking medical professionals shouldn't be quite as clueless as small children. Educated adults should know better and you would think they would have more experience dealing with those with special needs therefore EVERYTHING would not need to be spelled out for them. Then again, we can't teach them not to be rude.

Helen Harrison said...

To Carla, who said: "Helen, I'm thinking medical professionals shouldn't be quite as clueless as small children"

You are right, of course. But then the question becomes how best to teach clueless medical professionals under the circumstances.

DH can be quite brutal, and alientating. This, in my opinion, does little to improve patient care, at least in the short run.

I try to take a less confrontational approach unless something really outrageous is going on. I figure that if the MD has no manners (and a few don't), what I do or say won't make much difference.

When my child, however briefly, is in the power of such people, I try to be as "nice" as possible and suppress the many things I'd *love* to say, or I say those things as calmly and good naturedly as possible.

Carla said...

Yes, I also prefer the less confrontational approch and frequently end up biting my tongue. If I do say something, I try very hard to say it in a pleasant way. We have to keep in mind that our children's health and safety are in the hands of these "professionals". (Don't pi$$ them off or bad things might happen.)

Helen Harrison said...

To Carla,

I tend to cut other people some slack on knowing how to deal with Ed, because just knowing he has disabilities is not enough information for them to work with.

As we all know, people with disabilities are more unlike each other than NT people are unlike each other, and a detailed discussion and hands on experience is often needed, even by medical professionals, to know what to expect from our kids -- and even then...

I tend to assume that other people mean well...and they almost always do, even their method of coping with the situation is clumsy or downright bizarre.

We repeatedly had to tell the docs and nurses that the usual neurological tests would not work for Ed, and that we were the best judges of whether he was at baseline or not, and we were always there to let them know if we saw changes. Some of them took our word for it; others went through the charade of trying to get him take the neuro test. Some people just have to learn the hard way!

Then there were the people who would come in and ask, "Mr. Harrison, how would you rate your pain on a scale of 1 to 10?"

Ed probably thought they were addressing his father, but in any event, the 1 to 10 scale meant nothing to him, whereas it might have been meaningful to another person with severe disabilities. I would help the staff rephrase the question in a way Ed could plausibly answer, and, no matter what, I made sure he got his pain meds.

The Preemie Experiment said...

Chris wrote: "When a parent faces off with this question, s/he may learn that they are still quite traumatized by their child's disabilties. I think this is often evident in the need to spill one's guts, to retell the story, giving colorful detail. To me this means that we aren't over it. And I think some listeners say "Whoa!" meaning TMI (too much information)."

Hi everyone, I've been swamped with getting Paige back to school and myself (and Tyler) back into some sort of routine. I've been reading every comment and I wanted to thank you all.

After reading what Chris had written, I started to think about the times when I've given strangers the full version of Paige's birth story. I've come to the conclusion that Chris is correct. There have been times when I have told the story because I was truly not over it. There are days when that is still true.

The other side of the coin is I feel the need to tell people about Paige's prematurity in hopes they will understand (and sympathize) why Paige is so socially different. When she acts inappropriately, I feel the need to make people understand the reason behind it. I think it's especially hard because Paige appears normal because of her large vocabulary. So, when she acts odd compared to her peers, I am brought back to reality.

I hope everyone is enjoying the end of the summer months.

Thanks again for all of the great comments!!


future of hope said...

P.E. Wrote :
The other side of the coin is I feel the need to tell people about Paige's prematurity in hopes they will understand (and sympathize) why Paige is so socially different. When she acts inappropriately, I feel the need to make people understand the reason behind it.

*** I may go down in flames on this one, and I want to preface my comment with a disclaimer - I am in no way passing judgement on anyone's CHILD or anyone's PARENTING SKILLS. We all handle things differently.***

I was with a friend at a popular resturant's play area the other day, we had her 8 year old niece with us. The child was being very pushy and demanding with the other kids there. My friend kept making exuses to the other parents "She's autistic, and can't help acting this way". Now, the child does have mild Asperger's, and sensory issues, but the fact of the matter is, NO ONE CARED! They only cared about the fact that their kids were being pushed around by a child old enough to know better, that was not being controlled or corrected. I try to remember this when I am out with my son and he goes on sensory overload, or the other times when he is just acting like a brat. No one is going to care what the "reason" is. His behavior is still unacceptable in a public place. He doesn't need pity or sympathy, he needs to learn how to assimilate as best he can. I will not say "he is this way because......". That is not going to get him anywhere. Sure, it might make things easier now, but in the long run it won't help him.

Anonymous said...

Future of hope wrote:
Now, the child does have mild Asperger's, and sensory issues, but the fact of the matter is, NO ONE CARED! They only cared about the fact that their kids were being pushed around by a child old enough to know better, that was not being controlled or corrected. I try to remember this when I am out with my son and he goes on sensory overload, or the other times when he is just acting like a brat. No one is going to care what the "reason" is. His behavior is still unacceptable in a public place. He doesn't need pity or sympathy, he needs to learn how to assimilate as best he can. I will not say "he is this way because......".

I think this is largely true and very operative in the eventual lives that so many preemie families lead. Parents of former preemies with severe cognitive disabilities (for whom all the corrections in the world probably won't change their global behavior) or children whose ASD is so overwhelming that even with intensive modeling such as ABA or Floortime, they are poorly suited to social environments eventually largely withdraw from society and family. They live lives entirely focused around their disabled child and creating a life and environment for that child that does not create stress for them. Chris has spoken very eloquently about the ways in which loving Vic has meant giving up meaningful, enjoyable and self-defining activities and relationships - because Vic simply cannot control his Vic-ness simply because it makes other uncomfortable - or alternatively those with neurotypical behaviors negatively impact Vic. It is why every year on the preemie groups I've belonged to for 12 years that parents give in to outplacement for their preemies. They feel desperately sad in doing so, but they are often left with little or no options when put into a situation where their preemie is a danger to other members of the family or themselves, or they come to the conclusion that it is grossly unfair to deprive their other children of "normal childhood adventures" because of their former preemie sibling.

It is different of course, when you are dealing with a child who is cognitively normal, but manifest severe behavioral or psychological issues. In that scenario - I think you are very correct in your statement that the best service you can give to a child like that is to continually and significantly correct and control them so that they eventually understand what is expected of them by society. My daughter Ali, though not really a preemie has always exhibited behaviors that would be very familiar around preemie-land - lots of sensory issues, devotion to routine, labile emotions etc. It's been a 12 year "project" to get her to put the Princess Crown down and join the rest of us peasants with our shoulders in the yolk ... but it is probably the most important part of my job as her parent.


Helen Harrison said...

To Future of Hope and Sheila:

I have to agree with what you have both said.

Society, however much we may wish it, is simply *not* going to create an alternate universe where our children can manifest their "different ways of being." At some point reality must be faced.

There are *many* activities in which my family can not engage because our son has the problems he has. We try to accept this, and move on.

Ed should, according to legacy, have gone to Harvard, as did his father, grandfather, great-grandfather, etc. But that's not in the cards.

We do not apply, on Ed's behalf, to Harvard, and we do not take him places where he is likely to "lose it."

We try not to ask "society" for the impossible, or even the improbable.

I have recently been following a series of articles on special education that has been running in the Wall Street Journal.

The stories are tragic. And, to me, one of the greatest tragedies is the denial (by parents, by school systems, and by the politically correct)that makes some unfortunate situations so much worse.

The following account from one of the latest articles really grabbed me:
The family of Alba Somoza, who has cerebral palsy and speaks only
with the help of a computer, filed one such case [against a school
district for failing to provide proper education via mainstreaming].

Alba drew national attention in the 1990s when her family successfully pushed to include
the then-third grader in a regular classroom. Then-President Bill
Clinton backed her cause, and Alba, now 23, graduated with honors
from a New York City high school in 2002.

Last year, Alba and her family filed an administrative case claiming her education was a sham. A school report prepared weeks before she graduated showed she had language and math skills at an elementary school level, court records show. "You cannot shunt children through -- you cannot scam them through the system," says Alba's mother, Mary.

Since shortly after she graduated, New York has been paying for a
special program for Alba that costs $400,000 a year -- including a full-time teacher, an aide, transportation and extensive technology. The city says it is doing so out of compassion, not legal obligation.

The family is seeking to continue the public funding another year to
help Alba receive enough education to work as a museum docent.

The Somozas lost the administrative case, but a judge in U.S. District Court in Manhattan ruled in the family's favor earlier this year and ordered another hearing. Rather than develop a program that
would help Alba reach her academic goals, teachers lowered the
curriculum's "level of difficulty" and removed "large and meaningful
portions of its substantive content," the judge said. One teacher testified that he did most of the work on Alba's final project in 2002. New York officials say the school properly adapted the curriculum for a severely disabled student.

From: John Hechinger and Daniel Golden,"Extra Help: When Special Education Goes Too Easy on
Students: Parents say Schools Game System, Let Kids Graduate Without
Skills." Wall Street Journal, August 20,2007.

future of hope said...

Helen wrote:
The family of Alba Somoza, who has cerebral palsy and speaks only
with the help of a computer, filed one such case [against a school
district for failing to provide proper education via mainstreaming].

I have followed this young woman's story since it first became public back in 1993. At the time I didn't realize just how much of an impact it might eventually have on my life, my child with SQCP was not even born yet. As I remember, she is the more severely affected of a pair of twins. Her sister also has CP, but her's is moderate and she is fully verbal. The parent's argument was that both girls had normal to above levels of cognition. I remember thinking at the time that this was such a good, progressive step. Good grief, how nieve could I have been!! Don't get me wrong. I think that the child deserved/deserves an education EQUAL to that of her peers. I just no longer think that it can occur side by side and in the same manner that her peers are educated. Mainstreaming is a farce, and No Child Left Behind is making it so much worse. Schools now have to have the scores, and they will get them one way or the other - who cares if any actual learning is going on. A multi-handicapped cognitively normal child CAN LEARN, but it takes much more than sitting in a classroom to accomplish it.

Teacher Again said...

It is the teacher back again. I am certainly enjoying reading these comments and seeing this issue from the point of view of the parents involved. I just wanted to clarify a few different points and add one more thing to the discussion.

First, I am a science teacher to 8th grade students. I see about 155 students a day in groups of 30-35 (numbers are way to high, don't even get me started on that) for 55 minute class periods. There are some times it DOES take me a full 2 weeks to get a feel for all of my students. I like to give every child the opportunity to show what they can/cannot do on their own. Sometimes (as you may know), children will perform certain tasks at school and not at home and vice versa. I like to get a feel of what their capabilities are in my classroom before I get a lot of detailed information about them. That way I don't set the bar for their performance too low/too high.

That being said, there are a few students every year that I need information about prior to the school year starting. This information relates directly to the safety of the student or medical information I need to know.

As a result of the medical forms that are filled out at registration, the school nurse puts together a list of "Medical Conditions". The list has everything from bee sting allergies to Asperger's syndrome. And it is just that. A list without any other information.

Someone referred to the student files. These files are there for teacher reference. However, I have 150 students and there is not enough time before school starts to read each of them (they cannot be removed from the guidance office). In 8 years of teaching, I have asked to read a student file once.

The reason I'm going into such detail to explain this is because it is possible that a teacher will NOT get all the details and information about a child's condition before school starts or during the school year. They may be armed only with a list from the nurse and an unofficial view from last year's teacher. That is why I appreciate the parents who take the time to put together information for me. That way I can't miss it and it is exactly what you want me to know. Not what last year's teacher, the nurse, the special education teacher or anyone else wants me to know about your child.

*Although, keep in mind once you tell me stuff, you can't untell me. I had a parent once tell me about the the debt their family was in over medical bills and the affairs her husband was having as a result...I don't NEED to know that much information. After that, I was kind of embarrassed when I saw that parent in public. I just knew too much of their family history.

I wish you all the best of luck this school year!

Anonymous said...

I agree with future of hope on almost all counts. I would share only what is necessary under the circumstances, which usually means current diagnoses or treatments shared with those who need to provide assistance in some manner to my child.

Socially I think it might be appropriate to explain conditions to close friends, who really care and are impacted by potentially negative or different behavior (eg at a playgroup or babysitting situation).

I have a nephew with PDD, he is 8 years older than my oldest child. He needs constant supervision, as he poses a safety threat to himself and others. I love him, he is a great kid and deserves to be part of normal kid stuff. His mom says he simply doesn't respond to discipline or limits or rules. She must hate going to parties, etc. because everyone looks at it as a parenting issue.

I understand that it's not a parenting issue, but I worry about safety a lot. Especially if I have other people's young kids at a party or something. Recently he held a toy gun on a 2-year-old, and put her in "jail" under the bed. Although none of this is his "fault", he really should not be around young children and I wish his parents would realize this.

Anonymous said...

Interesting read:


Andrea said...

Hey all, quick question: Does anyone know the status of the surviving Morrison sextuplet in Minnesota? Last I heard, he was in critical condition, but that was a month ago.

Can't find anything on internet. Anyone know?


Chris and Vic said...

Okay, about Alba Somoza:

Schools have high stakes testing, esp for high school graudation. Did Alba pass that testing? Was her testing done with accomodations appropriate to her CP?

What did her IEPs look like all the way along the line? Were there accomodations in place that could overcome her communication deficits? Or were the deficits only discovered at the end of the line? (At graduation/high stakes testing time?)

Would the accomodations used in the school transfer to the workplace---i.e., communication boards, switches, etc?

Was there a transition plan in place at the school? Did the DVI join with the school psychologist in the transition plan? It seems as if these guys/this transitional plan would have discovered the problems before the very end of Alba's time in school . . .

Last, the remediation is outrageously expensive ($400,000), it seems to me. But is that what is required to bring a child like Alba (and some of our kids) up to speed, and graduate them at the same level as their peers? This is the most important question to me.
What would it take . . . If this case, given media attention as it gets slugged out, is taken seriously by N.Y. and other school districts, it spells out a revolution in the educational system. I don't believe the costs could be sustained--given the 12.8% preemie birth rate at the present time. Think about it--12.8% of all the kids in YOURs or MY school district requiring $400,000 to get them to graduation!! What would that do to everyone's taxes? How much would yours and my and our neighbors' property taxes go up in order to accomplish that?!

Helen, do the articles you are reading in WSJ discuss the cost of special education, if it were done correctly? All the way through to graduation?

Chris and Vic

P.S. I, too, doubt that inclusion in a regular classroom only works up to a point, with some kids, not all. If the Alba Somoza case plays out in the courts, I have no doubt that the parents insistence upon inclusion will be used as a defense by the schools' attorneys.

terri w/2 said...


This is all that's being released publicly at this point, it appears. Initially, there were some pretty derogatory articles about this situation in MN papers once several of the infants had died. After that, the hospital and family released nothing substantial to the press. Someone on here back in June said they were friends of theirs, or knew the couple through friends, perhaps they would know more.

Andrea said...

Thanks Terri. I noticed the dropoff and wondered what had happened.


Also, teacher again said:
Although, keep in mind once you tell me stuff, you can't untell me. I had a parent once tell me about the the debt their family was in over medical bills and the affairs her husband was having as a result...I don't NEED to know that much information. After that, I was kind of embarrassed when I saw that parent in public. I just knew too much of their family history.

I can understand that sentiment. And I'm sure that mom was venting to you because she needed to for herself, not her kid.

However, that is information that might be very useful to you in the classroom if the child starts acting out or whatever.

Of course, I'm a newspaper reporter and love hearing other people's business. That's just my personal glitch :)

Oh and guess what everybody? My 24-weeker turned 2 yesterday :)

Helen Harrison said...

To Chris:

Here are the numbers from the recent articles:

In 1999-2000, the last year for which figures are available, the US spent 50 billion for special education

New York City's public school district alone spent $390 million on private education for disabled students considered unsuited to public school

Such private tuition can cost $50,000 a year

Special education typically costs 50% more per student than regular education

14% of US students receive special ed

There are slightly more than 6.1 million special education students (as of 2005)

Placement in a nursing home for a child can cost about $100,000/year

I don't understand what is being done in the Samoza case to justify this exorbitant $400,000 expense. I can only think of how many other disabled children this money could have helped get the basics of care.

I also have to wonder where the parents were during all this and why they didn't notice that their daughter was not being educated, until, apparently, last year.

Helen Harrison said...

More figures from the WSJ articles:

The average special-education student cost East Islip, NY, $21,847 in 2004-5 compared with $9,550 for general students.

Publically funded private placements were 71,082 nationwide in 2005 up from 52,012 in 1996.

However the highest level of private placements was 73,149 in 2004. What made the difference was Supreme Court rulings and other new laws that have made it difficult for parents to challenge school districts for these services.

Helen Harrison said...

Chris also said "Think about it--12.8% of all the kids in YOURs or MY school district requiring $400,000 to get them to graduation!! "

The article says that "since shortly after she graduated" 2002...New York has been paying for a program for Alba Samoza that costs $400,000/year... and the family is seeking another year of funding!

The way I figure it, this has been 4 to 5 years at $400,000/year and she still can't get a job as a docent. So at least a million and a half, so far.

The Preemie Experiment said...

I'm late in responding so some of these comments may seem a little out of order... sorry...

Correcting behavior... I am a firm believer in correcting behavior in a child who is capable of learning to fit into society. Beyond that, it's just spinning your wheels.

Paige is constantly being corrected. Like Sheila mentioned, it is our job as her parent. But, I still feel the need to explain her behavior, at times. I'm still not completely sure why. I honestly don't feel it is because of the fear of what others may think of hubby and I (ok, maybe a smidge). I do know that I hate people thinking negatively towards Paige.

As far as what to tell the teacher... I believe it depends on the teacher. Last year Paige's teacher asked every parent to write a short into on their child. I wrote the important parts (loves to learn, accelerated reader, loves to be boss, struggles in math, epilepsy, sensory issues, etc) but I also added that she was born very premature and that I feel there are long term issues that will affect her education experience. I wrote that I would be happy to discuss them further, if the teacher felt it was warranted. He never asked for details but was EXTREMELY accomodating with anything she needed, without going through the IEP experience (been there, done that in the early years).

I am so incredibly thankful that she has him again this year. I am amazed at how much easier school life is when you have someone in your corner.

On mainsreaming... I may get flamed for this but I do not believe in full inclusion, in all cases. In cases where it may benefit the child, I am all for it. But, putting children in a class where they are forgotten, just so they can be fully included, is seriously wrong. I also believe that NCLB is hurting our kids.

Carrie said...

Different 8th grade teacher here. (I teach math and history) Wow! I thought it was just us in education that thought that NCLB was harming kids. Glad to know I am not out there alone:)
On full inclusion... Well, I think it is like everything else in education - there is never a one-size-fits-all solution. Inclusion works wonders for a lot of kids, but there are kids that it just doesn't work. Some students need something else for them to realize their full potential. And I see this for kids on both ends of the spectrum. Our high ability kids need to be challenged outside of regular education frequently too.
On a slightly different note; I went to a great inservice today. It was entitled "Climate of Respect." The focus was how and why to build community in a school.
During the session, we were asked to list the skills we wanted our students to have 20 years from now. Our list boiled down to - economic self-sufficency, healthy family/social relationships, and contributors to the community. Funny - solving linear equations didn't make the list :)
Something else that I took away from the inservice was that I should assume people have good intentions. I should not assume that people are out to get me (my family).
I know that a lot of people have had negative experiences with educators / school districts. But speaking for the vast majority of educators... The actions of most teachers were done with good intentions. I wish everyone a good school year. I am sure it is a challenge for a lot of you and your kids.
Andrea- Happy 2nd birthday to your little one.

future of hope said...

P.E. wrote:
On mainsreaming... I may get flamed for this but I do not believe in full inclusion, in all cases. In cases where it may benefit the child, I am all for it. But, putting children in a class where they are forgotten, just so they can be fully included, is seriously wrong. I also believe that NCLB is hurting our kids.

No flames coming from this direction! Seven years ago, I was a staunch, outspoken supporter of full inclusion. Then I got my wish - a fully "included" child. Which worked great in Kindergarten. After that, well....

The problem in most districts that I have dealt with is that you only have two options. Main-streaming with "supports" , or self-contained - where you completely give up all hope of the child receiving anything resembling a formal education, and consequently give up any chance for a regular diploma. Both options are good choices for certain groups of kids. But what about the ones that straddle the fence? The kids that have too many issues for a regular classroom setting to work, yet are still cognitively able and eager to learn? Where are these kids to go? So many questions, yet there are so few answers.

medrecgal said...

No flames here, either. Just a boatload of experience with an education system that is (still) deeply flawed. I can speak volumes to the question of "but what about the ones that straddle the fence?" What happens? They get recognized but ignored, too, and nobody knows quite what to do with them. I don't blame the teachers per se, just the fact that the "system" itself wasn't properly designed. One size fits all winds up not fitting most.

As a child who was bright but had some definite cognitive issues, I often caused confusion among any involved educators. I was always in "mainstream" classrooms but had some extra supports where they were available, to a point. I think they completely blew it, however, because it took them until I was most of the way through high school to realize I had a serious problem that was interfering with my ability to reach my full potential. I was a "B-" student who could have been far more if they'd paid proper attention. It wasn't until I fell flat on my face in trying college that I was formally diagnosed with an unusual form of learning disability.

The middle ground is sadly lacking, and always has been. NCLB is a farce, IMHO; a case of "we need to get our numbers to look better", a bureaucratic catch-all that does nothing to improve the education of children with disabilities.

The worst part? They STILL don't get it. It gets more problematic, rather than less, when you are beyond your years of formal education. I think perhaps cognitive disabilities (of ALL degrees) are the most poorly understood and accepted of any. People have certain assumptions they make and that colors the opportunities a person (child or adult) gets to reach their full potential. This is true of all disabilities in general, but I think because there is so much variation and at times subtlety to cognitive issues, people don't quite know what to do with those of us who have them.

Anonymous said...

Helen wrote:
Publically funded private placements were 71,082 nationwide in 2005 up from 52,012 in 1996.

However the highest level of private placements was 73,149 in 2004. What made the difference was Supreme Court rulings and other new laws that have made it difficult for parents to challenge school districts for these services.

Helen -
I couldn't possibly agree more -

On our list for preemie families there is a discussion about this exact issue. One of the long term parents finally had to take her child out of the public school system at 6th grade because it was clear that the placement was entirely wrong. She was able to find a private school that accomodates twice exceptional children as they are sometimes referred to (gifted, but learning disabled). The annual cost for the program in Denver is 20,000 dollars. The cost for the same program in Los Angeles is 25 to 30 thousand dollars - this is for elementary, middle and high school level education. Using an average of a grade three point of bail out from the public school system you are talking about 170,000 to 280,000 dollars - BEFORE the kid gets to college. Before you buy a pair of ballet slippers, a t-ball uniform, a Tae Kwon Do lesson - or any other "incidental" like I don't know food, shelter, clothing or insurance. This compares to a national average of 8 to 11 thousand dollars per student per year public school spending. When these placements are done on the public school dollar - you can easily see why school districts (even large well funded districts) are collapsing under the burden of SpEd. But it IS getting harder and harder for parents to get districts to foot the bill for this type of intensive education since districts do NOT have to prove they provide the BEST education for your special ed student, merely that they provide an adequate education for children with your childs issues - and most (not all small) districts can make this case. So it is becoming more and more an issue of classism - there are very few families with the economic resources to foot a 25000 dollar a year education for only one of their children. Parents on the list are sucking in their family belts and giving up every creature comfort - but still it is rarely enough and puts them on the brink of financial disaster that makes financial ruin an almost certainty... And the tidal wave grows.

Dear Mr. President,
Can you hear the tears ? Can you feel the sadness ? Do you understand the rage and panic ? America's parents are being crushed to death with the remnants of your school systems and your devastating laws.


David L. said...

Hi Stacy-
My daughter was born at 23 weeks gestation weighing 18 ounces (14 ounces at her most ill). Although she was not expected to live, she is now in the 6th grade. Due to a line complication causing her to lose fingers on her right hand, thick glasses due to ROP, mild cerebral palsy and bilateral hearing aides, people have always asked questions. My wife and I have always been open about her prematurity and Rachel is very proud since the other kids are often impressed that she once weighted less than a pound. Rachel is a delighfully engaging person and most people melt when they meet her. Likewise, we are very open about our adoption of our beloved daughter Amy from China. It is of course a very personel and individual decision about how much to tell people. My wife Sue and I have decided that educating people about the effects of prematurity has increased their sensitivity to the issue and to our daughter. After all, more money is spent on cosmetic surgery and sexual enhancement than on fighting the causes of prematurity, the leading cause of death of our precious children. By the way, my book "For the Love of Rachel: A Father's Story" was just nationally released by Enalan for publication and Rachel is extremely proud of her accomplishments and hopefully the general public will be better educated about the serious issues of prematurity.
Best, David Loewenstein PhD
Professor of Psychiatry and Behavioral Sciences, University of Miami School of Medicine

Carla said...

When my son was ready to make the transition to school I was worried given I'd heard mixed reviews about the county special ed school that he was most likely going to. I did research and tried to get him evaluated for two different private schools, but the school district/intermediate unit would not go for it because they have multiply handicapped classrooms in their school. I then found out exactly how bad Jacob's vision was and I do admit I pulled out the "legally blind card" just to get him into a better school. It's harder for the school districts to fight you when have such a concrete diagnosis such as blindness (plus other issues).---We live in PA, not New York where their school for the blind has big problems--check out the Special Education Muckrakers website where I found out some scary info. While there, make sure you read about the "Abu Graib on the Hudson".
Back to school.......
I am not very optimistic about the upcoming school year for my daughter. We have the same "special teacher" for the next 2 years. We found out last year just how ignorant, stubborn, just not very helpful, etc she can be. The bad news is we are just stuck with her---there's no where else really that she could go.

Carla said...

Yes, I would definately agree that the NCLB act has screwed our kids in special ed. Could it be why my daughter brings home math homework that is way beyond her and she has no hope of understanding (and completing in a reasonable amount of time)? Is it because the government/school just can't leave her behind? Well that's just what they are doing. You can't just drag someone through the motions without teaching them anything.