Monica and Grayson - our story

iVillage Member
Registered: 03-19-2003
Monica and Grayson - our story
Thu, 03-27-2003 - 8:37am
My name is Monica and I'm a single Mom.

Grayson is currently a little over 2 1/2 years old.

My pregnancy was basically uneventful, birth went well, and all seemed okay at first.

As the months went on it was apparant that something just wasn't quite "right".

By the time he was three months old I started asking questions, I was told not to worry - that "all kids are different and they all develop differently".

I was told that I was being a paranoid first time mother - and when I told the "professionals" that my Mother (mother to five children) was expressing concerns as well I was told that mothers have "euphoric memories".

When I asked what that meant I was told that in two years I'd forget that I ever had concerns about Grayson's development - that I would remember EVERYTHING happening right on time... just like my Mother remembers all five of her kids doing.

The same thing happened at his 4 and 5 month checkups. When I expressed concern that my 5 month old was not holding his head up, reaching for things, making eye contact, not rolling, not attempting to sit - I was told that I really needed to be grateful and not worry - that he was healthy and beautiful.

All I kept being told was that he was just fine - look at how BEAUTIFUL he is!

I agreed that he was beautiful - but I insisted that there were definite developmental issues with my beautiful little boy!

When it came time for his 6 month check up I called the Dr.'s office and requested a specific Dr. for his appointment the next day.

I was told that because I had switched to medicaid and was going through this specific program I essentialy agreed not to be able to pick a Dr. and that I would probably get the nurse practitioner again since all of the Dr.'s would probably have been requested by those w/ private insurance or that were paying by themselves. Months 3-5 checkups were done by the nurse practitioner!

I told them that if there was not a licensed Dr. in the room when I got there the next day we would walk out and not come back.

When we walked in, sure enough, there was a Dr. waiting for us.

I had never met this one - and wish that I never had!

He was not very understanding - and didn't have the best bedside manner.

But he did recognize delay's and referred us to early intervention (that next day was when I found this board)

I had so many questions and found lots of understanding and knowledgeable people here on this board. (I stumbled in on chat and Veronica was there and helped me to understand that things might seem "different" but that they'd be okay)

Grayson has no "umbrella" dx - but does have hypotonia (low muscle tone), Optic Nerve Hypoplasia (underdeveloped optic nerves) resulting in permanant low vision (approximate accuity is 20/150) and developmental delay.

He has delays in gross motor, fine motor, speech, and cognition.

We're making it work for us ... not particularly easy all the time - but it get's more "doable" every day.

Grayson goes to ST 2x's per wk. PT 2x's per wk. OT 3x's per wk. and VT 1x per wk.

Grayson continues to make progress and amaze us all!

He's currently trying to walk, is trying to talk, and suffers from chronic adorability!!!!!!!!

Accept him as an individual. Accomodate his needs and work with him to reach hi