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[Guest guest]

Hey everyone. Just taking the time to keep ya'll abreast of our

son's progress through his testing/screening phase of his diagnosis.

Please welcome my hubby: n2spell4u and my mom jaclaire8.

Currently, we have had a PT evaluation. His hamstrings are shortned

from toe-walking and his right knee turns in a little. Classic DS

walking style, so the PT informs me. (We learn so much in such a

short time as parents with children with disabilities, don't we?

Talk about information overload. I think my head will pop!) Anyway,

we're doing his PT at home because I'm an anatomy teacher and I do

yoga (still new at it but LOVE it,) so to spare the insurance costs,

we're doing the PT for hamstring stretches at home with a planned

quarterly checkup with PT to gauge his progress. The PT referred us

to an osteo doctor who will fit with AFO's (don't know that

that acronym stands for) which are little inconspicuous braces for

his ankles that will slowly encourage his heels to come down. We are

also doing sensory integration by rubbing his feet with different

textured things and having him rub his heels in the carpet. The

objective is to awaken the sensory neurons on his heels and insteps

so the neurons will get the synapses all the way to the temporal

lobe. This has been fascinating to me, particularly as an anatomy

teacher. I'd love to share this concept with anyone who is

interested in more detail. Kristy, maybe I can write an article or

something for the website? (I'm a freelance writer.)

We are still in the evaluation stage for OT. But it is good to know

that there will be help for all the sensory issues he has. What

relief!

Our county's special services program has been put on alert. Their

initial screening in November didn't turn up any problems (you have

to wonder how thorough their screening was then) but I've been

informed that next year in kindergarten, will be able to get

OT in the PE hour at school. WOW! Also, his speech pathologist at

the elementary school he'll be attending next year, has promised me

that she and the lead teacher of special services, along with the

evaluations from the doctors and other specialists and the personnel

from the county's special services, will meet at the end of this

school year to decide on the best placement for in

kindergarten - what teacher, will he need an assistant, etc. I am

overwhelmed by the support from the county alone. And, since the

elementary school has a GA funded pre-k classroom already, if they

decide that he is not ready for Kindergarten yet, they will just move

him back to pre-k, within the building. Wow.

The neuropsychologist was very frustrated that we weren't able to get

help sooner. There are so many programs for babies with

disabilites. Not to mention that our adoption costs would have been

paid for because the state of GA has a grant program for adoption

fees of disabled children. UGH! Can't change it now.

She wanted to know why the pediatricians didn't pick up on his

delays. Which is a question I've asked myself. But I told her the

answer I've been telling myself: MDS is hard to pick-out sometimes.

And altough was delayed in some things, he eventually

accomplished those tasks so every time I mentioned it to the

pediatrician, the problem seemed to work itself out. There hasn't

been any cause for alarm until he went to pre-k this year and it

became obvious that his peers were advancing and he wasn't. That,

and no one can understand a thing he says! LOL

The neuropsychologist said to move his insurance to Medicaid as soon

as we have a diagnosis, so the GA funded peachcare insurance doesn't

drop him. (thank you for that excellent tip, Dr. Gangarosa) and she

said she'd sign off on any form that the school required for proof of

special services required on his behalf. She begins his IQ testing

and cognitive testing in two weeks and said that a true IQ should be

done again after any child turns six. Lots of more really good

information from her.

We go to the PCP in April to catch him up to speed.

We have the EEG at the end of April, along with the chromosomal assay

and a thyroid test. A TCD with the neurologist the week after that

and a final diagnosis, with all evaluations in hand, by the first

full week of May, including percentage of cells, his estimated

learning potential, etc.

Am I overwhelmed? Good Lord, yes. Six weeks ago, I thought my son

might have ADD. Today, I'm wondering if he'll be able to learn 2+2.

It's scary. I feel like my hopes for my son have been stripped

away. I feel like I have to relearn how to be his parent; teaching

him, disciplining him, etc. He's the same kid he was six weeks ago.

I know that. But I feel like a ton of bricks has been dropped on my

head and no one will give me any advil for my whopping headache. If

I'd known of his disablilites right from the start, I don't think I'd

feel so disjointed right now. It's like someone swapped my son. An

adorable little guy that loves dinosaurs and the Steve Band

for a child that has a quadrillion appointments and a bazillion

things wrong with him.

Does anyone else think the neurologists and neuorpsychologists are

totally clueless when it comes to bed-side manner? I mean, these

docs are like " Well, your son has blah blah blah. We're going to do

blah blah blah. Bye. " And you're walking out of the office with

sixteen more forms and papers and appointments without a " hey, I know

this is tough. " Dang.

oh, and EVERYBODY wants EVERYBODY ELSE'S evaluations. I'm like, hey,

get it yourself. I'm dizzy trying to keep up myself! LOL I mean,

sheesh. I've got a folder for all this stuff, fax numbers, office

numbers, appointment dates, etc. Again, more learning for mom. I

had no idea how much paper pushing I was in for, or how many phone

calls I'd be making to various so-and-so's. I feel like i need a

secretary for crying out loud. Oh, and laundry, dishes, shopping...

who's got time for that. Plus his PT every night. I'm worn out!

And this is just the beginning. When I think of the rest of his life

and what he will require from us, from me, from doctors and the

Rx's... I just can't go there today. One day at a time.

We could use some prayers and support. And I am VERY grateful for

all the support we've gotten thus far from all of you. There is a

local DS group that meets once a month, so I'm hoping to jump in on

that too.

PHEW! Thanks for letting me rant. I feel a little better now.

Blessings,

Jennie