Sunday, October 21, 2007

Please Help Michelle

Every week I receive emails asking for help with a particular issue. Some ask for links, some ask for hope, and some ask for help.

I am going to start a reoccurring post in which I feature one of the emails (always with permission of the author). I ask that all of you who may have an idea, thought, link, positive story, etc leave a comment for the featured parent.

I will only allow positive feedback. Many of you know that I do not shy away from controversial topics and comments. But, when it comes to helping a family that is in need of direction, harsh wording will not help and will not be allowed.

Today, please help Michelle. Her emails to me (with her permission) are in bold. Although this post will be long, I chose not to edit them in fear of omitting an important piece of info.

"Stacy, I am emailing you asking for some guidance. I didn't want to hijack your comments section on an unrelated post. I am trying to find information on Vestibular Sensory Disorder written in lay-person's terms. Until I can absorb some information in regular-speak, I am often unable to comprehend and fathom what in the world the doctors and researchers are talking about. I need, at least, a point of reference, to jump off from.

We are unsure, at this time, if this is an issue, along with something else, that afflicts our preemie. But something is going on, more than just the normal, spoiled 3.

Some days I feel like throwing in the towel. Like today at the surgery center, when none of the other adults in his life were able to go with me. I was just waiting for the staff to call DFACS. I know all the other parents were judging my inability to control my child. He was freaking out about the environment, the hospital bracelet, the BP cuff, which is like flashbacks to NICU, the gown, etc.

Oh, God. The more I write it down, it doesn't really sound like Vestibular the way I understand. I thought Vestibular was affected by your ears and eyes. Oh hell. We may have bigger issues that I realized.

Maybe you or Helen have some resources readily available for one, now, panicking Mom, before I call the Neuro I can't stand and the Ped who abandoned us?"

This is another email from Michelle, giving a little background on her son.

Perhaps I should give you some background on my son, since, though I have been reading you for about 18 mos, I have only commented a handful of times.

My son was ripped from my body at 25 weeks weighing 26 oz. Spent 6 weeks on various ventilators from the high-speed oscillator to the nasal cannula. Had PDA ligation at 11 days old, blah, blah, blah.

My mother (and now, my sister) are both NICU nurses. Despite growing up with a mother who brought home stories, and often having visited her NICU as a young adult, (Prior to HIPPA. Also, these babies often had no one who cared what happened to them. No home to be discharged to, no family to hold vigil at their bedside.) I was still one of those seriously mislead individuals who believed that "whew! we dodged a brain bleed. No disabilities for us! He came home with just the standard preemie diagnosis and specialists.

The cardiologist, gastroenterologist and audiologist all released us from their care at 17 mos. We inherited an awful neurologist around the same time. We originally went to him for "seizure-like activity" that originated at his 1st birthday party. My mother, a healthcare professional for 35 years witnessed it and says they were definitely seizures. However, they were unable to reenact them under controlled conditions, and after a couple months, he ceased to have them at home. They discovered a hydrocephalus during an MRI for the seizures. Around this time (2 yrs old) he was also diagnosed with extremely mild CP.

So, all those bullets we thought dodged, were just waiting for us to become comfortable with our son's outcome.

He has been receiving OT and PT, and some ST, through the Early Intervention Program here, called Babies Can't Wait. Unfortunately, the suits are messing up the funding and that program is not going to be able to stay afloat much longer. When he turned 3, he was evicted from that program and accepted into the county school early intervention program. That is where he is now.

His gestational age is 38.5 mos, adjusted age is 35 mos. His cognitive and language skills are well above his "normal" peers. Sometimes, his speech even surpasses his sister, who just turned 5. His fine and gross motor skills are his area of challenge. He was 22 mos old before he started walking. (he was over a year old before he could lift his head up off the floor) He has just now started jumping, getting both feet off the floor and we are working on pedaling a trike. He can spear with a fork, but a spoon is a challenge, also a regular cup. He cannot dress or undress, or unscrew a cap.

Then we have his sensitivity or lack thereof. He has always liked touching skin, usually my stomach or chest, but his will do, or really any skin. I just always thought that was a hold-over of Kangaroo Care in NICU. He has a huge tolerance for pain. He was covered in fire ants a couple weeks ago and did not cry once. He just said " help me please Mommy". Yet he cannot stand to have his shirt off, or his shoes on inside. In the car, the shoes HAVE to be on!

I was a preschool teacher in a previous life and have a college degree, but I honestly cannot distinguish what is normal stubborn 3 yr old behavior and what is a possible "syndrome"

Ok everyone, now it's your chance to help. Please leave a note to Michelle in the comments section.


kate said...

I can't give you any professional or even experiential advice, Michelle, but I do want to say that I'm thinking about you, and bravo for trusting your gut. This always seems to be the first step.

I'll keep you and your family in my thoughts.

Jen said...


I'm certainly no expert, but I've been there. I hope that helps in some small way for you.

My DD Grace fits the description of your son in a lot of ways. What finally helped me was to read the book, "The Out-of-Synch Child" by Carol Stock Kranowitz. It gave practical suggestions and tips for finding the right therapist and dealing with the behaviors that go along with Sensory Processing Disorder. I'm not sure if anyone suggested that to you or not, but please know that there is help. Our child is classified as a sensory seeker. She is the kiddo who will run up to you and then promptly bowl you right over. I called it the Dino Syndrome (remember the Flintstones?). There are many other behaviors, but that is not the point here.

For me, learning that my child, like so many other former preemies, had a disorder that had a name was a life saver for me. I no longer blamed Grace's behavior on myself and supposed bad parenting. I learned how Grace's brain was misinterpreting situations, events, feelings, etc. and now I allow time to help Grace experience them without the super meltdowns/tantrums.

Each day is still a struggle to help Grace cope with her sensory issues, but she can and does cope with them now. Some days are better than others, but we are coping.

Most kids diagnosed with Sensory Processing Disorder see an occupational therapist/developmental pediatric specialsit/neurodevelopmental specialist who is trained in therapies for Sensory Processing Disorder. Basically, you give your chid a full sensory diet of active play situations where they can touch, feel, delve, dive, jump, run, and basically be free to touch, touch, touch, which then allows them to be able to better control themselves in situations where those actions are quite allowed. It is like telling a kid to go "run it off." This therapy has been a life saver to Grace and to us. Sensory Processind Disorder is quite the spectrum though so I'd advise getting a specific assessment done for your son, if you haven't.

Gracie is 5 now, but I remember 3 was the absolute worst timeframe for her sensory issues. Hang in there, and again, I hope this may help in some small way. Feel free to contact me via my blog if you'd like.

Jen, mom of Grace (34 weeker) & Meghan (27 weeker)

Jen said...

I was thinking about you after I left my last comment. This summer I wrote a blog entry about some of my daughter's sensory reactions. If you are interested, here is the link to that post:

If nothing else, you may recognize some of the behaviors. haha

Again, best of luck and know you aren't alone.

Jen, mom of Grace & Meghan

terri w/2 said...


There is a disorder called "non-verbal learning disorder" or NLD in which the child is extremely verbal at a young age, however, also very sensitive to certain things in their surroundings. They are not to be able to "read" others non-verbal communication (of which 65% of our actual communication is made up of). Puzzles, figuring out how things work (and later math), turn out to be areas of weakness. When tested, these kiddos always test very high verbally, and very low in computation. If you think that your child may have this, an evaluation with a pediatric neuropsych would be able to diagnose this. We found a great peds neuropsych at a university hospital/clinic.

There is a website with fantastic info on this disorder. Go to:
www.nldline Many professionals have never heard of or are aware of this disorder. This disorder originates in the right side of the brain, and unfortunately, most people are more aware of difficulties in the left side of the brain.

Chris and Vic said...

Michelle, a neuropsych eval would give you entre to other neurologists, if you are not clicking with your current neurologist.

I assume you have read The Out-of-Sync Child by Carol Stock Kranowitz.

And I assume that either your OT or PT or both believe in Sensory Processing disorders and address them specifically.

If establishment medicine and therapy does not help, look into Brain Gym, cranio-sacral therapy, hyperbaric medicine, massage and other alternative modalities.

Diane Maroney contributed to Stacy's blog recently, didn't she? Why don't you go back and see if you can read what she wrote. She has ideas about alternative practices in abundance. I will try to look up one of her posts, as well. If/when I find it, I will post it here. Or maybe Stacy has it cataloged.

Your son's issues are just beginning to unfold at age 3. It may be a while before you or any doc or therapist or educator can give a satisfactory description/diagnosis of his neuro status. YOU KNOW there is a lot going on with him--you just don't know how to label it . . . For now, suffice it to say that he is not neurotypical. Helen's posts can tell you about orbitofrontal area of the brain (and other areas affected by prematurity and NICU treatments), but that still is not a diagnosis, a label, that would give you a buoy to cling to and help direct treatments. You just have to wait.

"They also serve who only stand and wait." This is your life, as the mom of an ex-preemie: waiting helplessly, advocating like a she-bear, worrying, grieving, and trying with all your might to just live one day at a time.

You can do this. Doing this will serve your son.

This is YOUR normal. Just hold out your arms to your son, and accept his needs. Do the best you can. You will have a breakthrough. Many breakthroughs in the months and years to come. You can do this, even when it includes painful waiting.

Lickety Split said...


My thoughts and prayers go out to you. Your son and I sound similar in some ways. I too did not walk until I was 22 months or so. In the early 1970s there wasn't a lot of developmental pediatrics available. My parents had multiple neurologists evaluate me for the left side of my body being easily fatigued and less coordinated than the right. They received every prognosis from "he'll grow out of it" to "he won't live into adulthood" and in the end, it was more the former. While I did better than most "normal" peers in school work, I can't say that I wasn't frustrated.

Now, at 37, I myself am a physician and I know that I could never bring myself to care for th medical needs of preemies even though I was one. I will tell you that my numerous medical school assignments in this area cut right to the point you're making..."what is normal child behavior and what is abnormal?".

Sometimes the distinction is not clear. I will tell you however that as sick as I was as a child in many ways...I am considerably healthier as an adult.

I wish I had something more substantive to add to the answers received here but the easily googled reference material is easier to understand than any medical textbook. Perhaps the best answer I can give is in the above testimonial.

Anonymous said...

Thank you all for your thoughts and well wishes.

Chris and Vic, I have not read "The Out of Sync Child" yet, as I have been burying my head in the sand and just hoping it was normal behavior he would outgrow. That book has come up numerous times, though, so it definitely is on my list, as soon as I can bring myself to delve deeper.

terriw/2, NLD, doesn't really sound like my son, he likes to try to figure things out, and he has always enjoyed puzzles. Not that I am shoving any suggestions aside. He will work with anything as long as his patience holds, and that all depends on if it is something he wants to be doing. I will check out the website you recommended.

jen, I have been learning a little here and there about Sensory Processing Disorder. I am going to go visit your post, and explore your blog, when I have some quiet time to process, and take notes.

Thanks everyone!

Mom to Preston, 25 weeker

Tammy said...

First let me say, Stacy, this is a wonderful idea. Like I mentioned when I emailed you, your blog has been a Godsend and this idea of helping each other with our various issues is a great addition! Michelle, let me mention you are not alone and please don't worry about the diagnosis. Focus on the solutions. The range of symptoms for sensory processing issues is huge. Lots of children besides preemies have various symptoms and there are books that offer solutions. I like "Raising a Sensory Smart Child" by Lindsey Biel. I attended a birthday party after learning about my son's sensory issues and noticed a child who wouldn't eat his hot dog. I realized he didn't want to eat with his fingers and I got him a plastic fork and he quickly gobbled it up. Best of luck in finding the solutions to helping your son.
mother of Daniel (24 wker)

Helen Harrison said...


I'm just catching up with the blog after being away from home for 2 weeks.

My first reaction to the situation you describe is that it probably doesn't matter what your son's set of behavior and developmental issues are called, and I'm not sure that "vestibular" problems are actually considered a diagnosis outside the OT community.

Your son's behavior and developmental issues do appear to be brain based, however.

Hydrocephalus which is not progressive (your son doesn't have a shunt, does he?) is indicative of brain tissue loss, and PVL. This condition is sometimes referred to as "hydrocephalus ex vacuo"-- because the ventricles enlarge into the vaccum left when the surrounding tissue dies or fails to develop. Such changes occur with or without bleeds and are found in virtually all <26 weekers (and in a majority of preemies above that age as well). They have important behavioral consequences.

I think a good developmental pediatrician and a new neurologist, to whom you can relate, would be the people who can best help you. Meanwhile, I think you can rest assured this is not "spoiled" behavior that responds to discipline.

The developmental profile you have given is *so* similar to my son's -- not walking until 21-22 months (actual age) but verbal in a way that was precocious. Our son was reading by age 3.

The behavior in medical settings you describe also brings back many memories of our son Edward at that age -- and even today -- 32 years later.

The early verbal skills can be striking, but what your child does with his verbal skills matters most. Does he engage in normal, meaningful give-and-take conversation? Does he understand humor? make believe?
How does he play with toys? with his peers? These are topics to discuss with a good behavioral pediatrician.

terri w/2 said...

And Helen, if I could add a couple of more to your questions. .

Does he make eye contact, or tend to avoid eye contact? Does he make fairly good eye contact with you, but not with others?

Does he have any behaviors that seem odd in comparison to other kids - for instance, when he gets excited, does he flap his hands?

Is he very rigid or inflexible in his ability to transition from one activity to another?

Does he seem to get stuck on certain behaviors or ideas? For instance, does demand that you do something a certain way each time it's done?

Helen Harrison said...


Terri w/2 offers some excellent additional issues to look for and discuss with a good behavioral ped.

Also, as soon as your son turns four, join the Preemie-Child list where you will learn that many other preemie parents are seeing the same behavior you described here in their own children.

Anonymous said...

Thank you, all! You have definitely given me a jumping-off point, and a lot to chew on.

Stacy, I cannot thank you enough for giving me this friendly forum to seek information.

Helen and Terri, I had always attributed his lack of eye contact to his visual problems and his difficulty transitioning to the fact he gets so involved. I had never drawn a correlation between those things and a possible sensory disorder.

He will give me very good eye contact if we are sitting very closely, face-to-face, or I turn him to face me. Transitions are usually met with screaming, crying and stomping, as are changes in routine.

Once again, thank you, everyone, for your words of advice, information and encouragement. I will file them in my brain and my heart to help as I wade through this newest challenge and try to forge our path. Hopefully while I'm doing so, I will be able to convince my MIL I'm not a bad mother, after all. (Did I mention we are currently living with her?)


terri w/2 said...

Hi Michelle;

There is a checklist of behaviors associated with Asperger's Syndrome that could be helpful to aid you in your search for information. Of course this is not a diagnosis, but more of an informational path that can empower you on your search. If you have this information in your hands as you go to your neurologist or behavioral specialist or pediatric neuropsychologist, you will at least have a starting point to rule out or rule in. Keep us posted.,1120,1-33638,00.html