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Kristen's picture
Kristen
Joined: 03/27/2010

I've been following this web site and, before its launch, the Charlan family for almost two years now. I'm a big fan! Finding the videos of Zach when I was first told my youngest son maybe had mild CP was very reassuring and helpful.

I have three children, one of whom (L) has global development delays. He is 3 yr., 4 mo. old and apraxic (without speech), but very social. He knows a fair amount of sign language, which helps us with some basic communication and gives us insight to his cognitive abilities. He has gross motor delays as well as fine motor delays, but he is making nice improvements in both areas. Recently, he learned to run and jump with both feets, and he seems to be learning how to isolate a few of his fingers.

L also wears bifocals for strabismus and undergoes frequent hearing tests to evaluate his hearing. He had tubes put in both ears when he was 18 mo.

L has no formal diagnosis other than global development delay. He was a full-term baby, born by C-section, and very healthy at birth. By 9 mos, we were starting to wonder why he wasn't babbling, why he wasn't sitting or even rolling over yet, and we raised these concerns over the next six months with our doctor. She brushed off our concerns, telling us he was beautiful.

We agreed he was pretty wonderful, but knew something wasn't quite right. When we moved back to Illinois from California, where we lived during L's first 15 mos, our favorite peditrician (who had seen our first two children, as well as L when he was born) immediately referred us to EI and L began receiving weekly OT, Speech, and PT. 

L's progress is very slow but consistent, which reassures us there is no degenerative issue going on. We have discovered he could be a real "medical dartboard" if we allowed it, with every specialty seeming willing to sedate him and test him for one thing or another. We have decided to avoid these procedures as much as possible, given that the treatment - therapy, therapy, and more therapy! - is the same regardless of what they discover or don't discover. And none of those tests can answer what we really want to know, which is what does the future hold?

We have visited a neurologist we like and may pursue an MRI at some point. L has also undergone tests for MS, Fragile X, and chromosonal disorders. All have come back negative, although we are still waiting for results from a recent one testing for Angelman's.

For the most part, we are just learning to live with our new normal and hoping time is on our side.

L attends 1/2 day preschool now 4x/wk. Half the children are typical and half have special needs. He receives additional therapy in school, as well as private therapy outside of school. He keeps us busy!

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emilyh's picture
emilyh
Joined: 05/27/2011

Hi Kristen,

I noticed that you probably posted this ages ago but it was nice to come across your story.  It's one of those "Wow, there's someone else out there - yay!" type feelings that I get when I come across other people who are in close contact with a Global Developmental Delay person.

My brother is such a person in my life.  He's currently 29 though we say that he functions at a 2 or 3 year old level.  So he needs help dressing, a bit of guidance going to the washroom, and we need to prep his food for him.  I am now married with a 1 year old daughter and our family has moved back to our hometime such that my daughter can grow up with my brother.  I hope that one day, they can be friends and my brother can continue to learn as we teach my daughter.

You mentioned that you have other children as well, as a sibling of someone with disabilities, I would have loved to be able to talk to other people in my situation.  As an adult, I was made aware of a group called Siblings Support Project.  Their website is: http://www.siblingsupport.org/  I just wanted to bring it to your attention if you wanted some resources for your other children.

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