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Wednesday, May 02, 2007

Feeling down and depressed

Want to know why?

I'm really quite convinced that my daughter has serious developmental issues that the many therapists she sees seem to gloss over, "she's doing so much better" they say. I don't think I'm imagining this.

Here are some things I notice regularly:
Kaitlyn is almost 16 months adjusted

-She has never pointed or indicated that she wants something- ever
-she doesn't try to get me to help her - ever
-Although she will smile and walk towards me and say "papa" if I come in from outside - as soon as I pick her up she refuses to look at me and arches and wants down
-She often likes to rub or bang (not very hard) her head against things, this makes her smile sometimes
-She walks around repeating sounds, like "hmm,hmm" over and over and over, more of a whine that baby gibberish
-it is very hard to get her to look at us
-she still really doesn't like to be held- she becomes very agitated and upset
-babies /toddlers I see when held by mom hold on to mom, kaitlyn really doens't hold on to me-
-she'll usually respond to her name (a very good thing, as this is a big autistic trait) but there are times when she completely igornes you (this seems beyond just toddler tuning out to me), it's like she has no idea you are right next to her calling her name repeatedly

That's all I can think of for the moment.

In a month she has another NICU developmental follow up.

Here's a link that will show you why I feel sick to my stomach.

Enough said.

http://www.prematurity.org/research/not-catchingup2.html

20 comments:

Laura said...

i can totally understand your concerns and fears. i had many of these same fears (and others) when daniel was around the same age. i will admit that i still stress and worry about him and his future as even now there is still some unknowns.
print this blog entry and take it with you to hr next nicu follow up visit....sometimes amnesia strikes us when we actually get to the place where someone asks us if we have any questions or concerns.
hugs.

Jennifer said...

Doesn't it make you mad that you were led to believe she would 'catch up' by age 3?

It makes me incredibly mad that this is the message portrayed to the general public.

This message is spoon fed to parents by doctors in the NICU, regular pediatricans and even your neighbors. Deception of this kind can cost children and their parents precious therapy time/opportunities!

The march of dimes doesn't do too much to change this idea either. They only show cute kids under 3 in all their ad campaigns. I can't tell you how many people I have come across that all say the same thing to me: "Oh she'll catch up to the rest by the time she's 2, don't worry!". I am sick of hearing that because if she doesn't (my daughter is only 14 months) then what? What happens to those empathetic ears then??

Prematurity is a serious issue with LIFE LONG effects and after age 3 the support/empathy/understanding seems to go away.

You move through the stage of mom to a cute preemie to mom of disabled child and the support for parents of disabled children is very poor.

I am so sorry you are now in this position, but I am very glad you are doing your own research and pushing to get help for Kaitlyn.

You're an amazing mom and I truly believe in this quote:

“A child’s outcome is directly linked to their parents and their environment.”


I'll keep you all in my good thoughts for the follow-up appointment.

The Preemie Experiment said...

Have you checked into sensory integration dysfunction (SID) or I think it's called sensory processing disorder (SPD) now?

Paige used to do all of those things that you mentioned. She really hated being held. It's painful for a parent.

Finding a SID qualified OT will help. They can ask you questions to help find some answers.

Stacy

Yuka said...

I am going to chime in with Stacy. There is a book "The Out of Synch Child" about sensory integration dysfunction. My son with CHARGE has combinations of hyper and hypo sensitive and sensory seeking and avoiding. SID can manifest looking like autism or ADD/ADHD when self-regulation has not been happening. There is a wonderful SID support list on yahoo as well........otherwise {{{hugs}}} it's a grieving thing for me when things which once were a source of hope become expectations which sadden me and prevent me from enjoying the fullness of the moment..... it happens so often - especially in raising children - medically remarkable or unremarkable .... it never comes out looking how I thought it would...... Ihope I am making some sense. best to you- yuka

Anonymous said...

Hello, I'm so glad to check in from time to time to review your blog on your daughter. My son also a preemie I have concerns as well, like him not eating food and still requiring the GTUBE for this reason. I guess the worries will never end. Can you please email me when you get the time. I have a question about the mickey GTUBE your daughter has and is she eating now. My son is now 15months but technically 13 months and has no desire to eat and he won't finish a 5 ounce bottle of milk either. my email address is: npharden@hotmail.com

Anonymous said...

Having seen different ends of the spectrum, I have to say that I'm not sure preemies ever fully catch-up to their full-term counterparts. One of my cousin's was born at 25 weeks, with many complications. She is now 18, graduating high school this month and going on to college. However, she still suffers from significant hypotonia and has a very hard to focusing in school. She had a GTube until she was 7 years old. She reached all her developmental milestones later than other children her age, even into her school-age years. My nephew was born only 5 weeks premature, and now, at age 4, is still hitting milestones significantly behind his peers. I would definitely look into things like SID and Asperger's Syndrome. I also recommend researching and considering a test for "Fragile X". I know none of this comment was reassuring, but please know that you are in my prayers!!!

Jenny said...

Hey Liz,

I understand your worry....but I am sure she's fine :) I have met many kids who absolutely hate to be held...and don't give eye contact and hit their heads and are completely normal! Just to give you some reassureance :)

You are in my prayers Liz! and I hope that everything turns out okay with precious Kaitlyn!

Jenny said...

another note....

a lot of these observations sound like the way I was when I was a baby...and i am normal (well lets rephrase that. if i was normal, i would be boring! nobody is "normal"!). I watched a lot of vids of when I was little, and I seemed to not liek to be held or touched too much, and I would purposely run into the wall! so i believe shes okay :)

Miracles said...

I totally understand your concerns. As a mom of preemies we tend to look for certain things that other moms would never even think of.
One of my twins was very withdrawn from both my husband and I. She would never look at us in our eyes, absoltely hated to be cuddled, was fascinated with buttons. Our Ped suggested sending her for an Autism assessment which was fine with me. My twins are now 23months(actual) 20months (corrected) about 3 months ago something changed. She doesn't love to be held but from time to time she will put her arms up to be picked up for no reason. She still does not always look us in our eyes, but she is getting better. In my heart I don't believe she has autism but having her checked because of her prematurity just makes sense.
I know a lot of other mothers don't believe certain things will pass, but some things do. I have spoken to many mothers who have full term babies, no health problems at all who say their kids were the same way.
Try not to stress too much about it.

Michelle Halpin said...

I would also like to recommend that you check into SID (or SPD as it is not called), because she has the hallmark signs. I have a husband and a son with this, and it's difficult.

Kaitlyn is exhibiting many of the signs...not wanting to be held is one, as is the head-banging, and you mentioned in your Easter post about how she was upset by the feel of the grass outside. The Out of Sync Child is an excellent book to start with, but do get Occupational therapy specifically for SID if she needs it. Everyone else is right...don't wait; therapy is most effective early. SID often accompanies other behaviors on the autistic spectrum, so I would intervene as early as possible. Don't let others pat your hand and tell you not to worry. You have that mommy-instinct for a reason.

Praying for you and yours.
Michelle from the PROM list, way back when. :)

Wendy said...

I agree with the other's comments about checking into the SID component. Kaitlyn sounds a lot like my DD when she was that age. My DD is now 4 and has outgrown many of those issues with the help of OT. We also used The Out of Sync Child as a starting point.

Hugs,
Wendy from the Feeding List

Kristina said...

All moms of preemies feel this way...at least from time to time! Somehow, though, the children do catch up and it's important to put all this developmental stuff into perspective. Once your child can walk and talk...does much else matter? Not in the long run of things.

Anastasia is, by all accounts, perfectly "normal," but a bit delayed. She didn't start pointing until about 20 months actual. Now she does it constantly. And she never tries to get me to help her; she's quite independent. Anastasia also often hates having my face (or my husband's face) in hers, and will look away or shove us away. I think that's pretty common. Head banging is so very normal, even for full term kids! It means the child is either overwhelmed with stimulus or is tired. Repetition is part of baby and toddlerhood, too. Anastasia didn't start holding on to me until recently...say 20 months actual. And it's mostly because now she's starting to walk and is a little unsure of herself. Not responding to her name could just be that she is CHOOSING not to respond to you. The older she gets, the more she'll do that!

Really, honestly, I'm not making this stuff up!

Remember, too, that "catching up" has a TON to do with personality type. Go-getters are going to catch up sooner. Laid back kids are going to be much slower. I've noticed, for example, that while Anastasia has a typically preemie stubborn streak, she's not really motivated to move on to the next step, developmentally. Forever (it seemed) she was content just laying there on the floor. Then she was perfectly content sitting on the floor. It seemed to take forever to motivate her to crawl. (Christmas presents did the trick.) And it took a long while for her to take the leap from cruising to walking on her own.

One reason I think preemies are a bit slow to catch up is they tend to not be around other kids their age, due to RSV fears. If you don't see other kids your age talking, walking, jumping, etc., you aren't nearly as motivated to do it yourself.

Take heart. Kaitlyn WILL catch up. And the therapists are right in at least one thing: She has made SO MUCH progress this year!

Hugs,
Kristina

Mir said...

I agree with everyone else. Sounds like SPD, and not Autism. It also sounds like this could be part of her oral aversion.

Here's a checklist of behaviors:

http://www.sensory-processing-disorder.com/SPD-symptom-checklist-for-infants-and-toddlers.html

Nobody Special said...

I, for one, did not find the article that you linked to very compelling. Sure, she cites lots of research but if you look, the vast majority if grossly outdated.

Although I do not do prematurity follow-up as my profession, however, I am a scientist who reads and reviews biomedical papers on a regular basis. Using a couple of "old" classic papers to help your argument is okay. When your entire arguement is based on old research, a red flag is raised.

In addition, I have been unable to find any biographical info about this author and think that this blurb may be her only writing. She is certainly no expert on the subject. (much like myself...)

I'm not sure what is out as far as current literature (after 2001) but you can search www.pubmed.com to find if there is more up to date information that will allay some of your fears.

Best of luck to you and your little (precious) girl!

Special Survivors said...

Hello Liz.

My son, a surviving twin also, is now almost 3.5. He has mild CP, so is not yet walking, though he's quite mobile with crawling. He is also g-tube fed.

I remember hearing from friends, family and even strangers that "he'll catch up by 2"...and here he is, almost 3.5. My 11 month old daughter, who was born full term, is passing him on gross motor milestones (she recently pulled to stand). Max is just beginning to "talk", though he's been signing for some time.

It's so frustrating to hear that old standby phrase that our preemies will catch up. My pediatrician, a wonderful woman, put it quite frankly. We just don't know with these kids. The "catch up by 2" mentality does not reflect the outcomes of micropreemies, who typically suffer from a host of long term challenges.

Hugs,
Heesun

The Krumwiede Five said...

I have no advice on milestones etc, but I just wanted to give you all a big cyber-hug. Please know that we are praying for/with you all the time.
Love and Prayers-
Kristin

Lisa said...

Hi Liz,

Cole was born at 24 weeks and he sees every therapist our government will allow, not because he has issues, but because I wanted to make sure that we would have someone to answer any questions we have about development.

He is 21 months old and 17 months corrected. He has just started to walk unassisted and does not ever point when he wants something.

He has just started hitting his head on the floor and walls, which I have been told is normal for all babies including full term infants. Our therapist told us it is a phase and if we don't give it any attention, he will stop doing it.

I know that he may not excel in school like some of his full term friends, but we feel blessed that he is with us everyday and that he can do a lot of things that normal children can do.

It is second nature to worry, but just give her some time to come into her own.

I always get into trouble from our feeding team for comparing my son to other kids including full term babies. Try not to follow the milestones of full term babies who are around Kaitlyn's age - it will drive you crazy.

Keep up the good work with her. It will pay off.

Stacy said...

Liz -

I am so sorry. Your post has haunted me the last few days, and I wanted to take a chance to comment.

I have to admit that I kind of follow along the lines of Nobody Special. Maybe I'm just in denial.

Yes, Tanner is 3 and he hasn't caught up, but I do believe he's headed there, I just don't think the age of 2 applies all of the time. Technology has changed, medicines have changed, and I think that this will make a huge difference in the life our preemies have.

Part of this mentality comes from Tanner's transplant doctors. If I try to find kids who are typically older with a transplant - there aren't very many! They have died from various causes or complications. When I bring this up to our doctors, they keep reminding me how far the medicine arts (it's really an art, not a science).

So, I guess I believe our kids will fare better.

Anonymous said...

I read your blog and wanted to leave you with some hope. My twin sister and I were preemies. We are now 27 years old. We were about 2 pounds each when we were born. I'm an attorney now and my twin sister is an advertising executive. Don't lose hope. Hang in there. You are doing an amazing job.

Laura said...

I wish you the best of luck with Kaitlyn. Even if she does turn out to have an autism diagnosis there are many therapies that give hope to children with autism spectrum disorders. I have Asperger syndrome (a milder, related disorder) and I have also volunteered for several years in a school program for adolescents with autism. The majority of the children in this program did learn to communicate (not always verbally). Every child in the class seemed happy even though they expressed it with different body language than typical children. One thing I would recomend now if she is doing self stim behaviors (you mentioned she likes to bump her head against things) would be to come up with a relaxation activity that serves the same function as the self stimulation (swinging works particularly well in my personal experience, might not work for Kaitlyn because of her vomiting but it would be worth a try). Satisfying these sensory needs would allow her to focus more on learning etc. Children with autism spectrum disorders often have to be taught many social behaviors through step by step instructions but most of them CAN and will learn and make progress. It is too early now to know how far she will progress. I am aware of several cases where autistic type behaviors and lack of non-verbal (or verbal communication) masked normal or above normal intelligence. You cannot fully control the Kaitly's future abilities but you can encourage her and give her an excellent chance at a happy (even if it isn't a "normal") future.