Re: Kim- preschool

[Guest guest]

I don't think you are being overprotective at all! I feel the same way

and even though Asenath is at least 2 years behind in most areas, I still

will NOT send her to a special needs preschool for the viral exposure and

fatigue issues. Besides, I know your OT and SP since you use the same place

as we do for the home therapy, and they really do try to cover many of the

things a preschool would do at this age anyway. With several hours per week

one on one attention, would they really get better than what they are

already getting? I don't think so! Another option is to try a little bit

of home-schooling with them, not in a formal way, but in a playful way. You

can color with them, have them cut with scissors and help them, etc. and

cover what a normal preschool would right in your own home, in a safe and

nonstressful environment. If you have the girls on a waiver program, which

I think you do, then they also may qualify for the SCL program which is

basically a trained nurse who comes to the home for a set amount of time to

specifically work on goals you set yourself for your kids. It isn't the

same as therapy as they do it while they play with the kids and try to make

it just a part of their day rather than a set apart time of therapy. (Not

sure if I am explaining that in a way you can understand, but...) If you

want to hear more about it, feel free to call me.

See www.caringbridge.org/ia/mitomomof9 and this link to see a real look into

Mito using a photo collage of my girls at www.heartbeatsformito.org

Darla: mommy to

Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube,

hypotonicity, disautonomy, SID, dev. delays, asthma, cyclic vomiting...

Zipporrah (12 months) Mito, strokes, neuro-motor planning dysfunction, SID,

GERD, 100% G-tube fed, asthma, trach issues, aberrant subclavian artery,

disautonomy, hypo & hypertonicity, migraines, possible seizures, dumping

syndrome, iron deficiency...

Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (8), Kezia (3), &

Marquis (2) (some with Mito symptoms)

preschool

I'm coming to the experts for some advice. While we were at Mayo last week,

we met with Dr. Barbaresi, the Developmental Pediatrician. He said the

girls are about a year behind in their speech and motor skills. We already

knew that...anyway, he told us we should enroll the girls into a special

education preschool. He thought the sooner the better to help them develop

along.

Here's my " beef " about it and I brought this up to him. I am scared to

death to put them into an environment with a number of other kids. You

know, the illness factor. When the girls get sick, they have nasty seizures

and fall apart. The Good Lord must have been listening as we got home that

night and sure enough, Lindsey had the worst seizure we have ever seen. Was

He trying to tell me something????? I am okay with the girls going to

preschool someday but, I don't think I am ready to send them right now.

They just turned 3 on October 3rd. They still have three years until they

will be going into kindergarten. Therefore, after this year, they will

still have two years of preschool.

So, am I being an over-protective mom and denying them the chance to

flourish in an environment outside the home? (By the way, they get S/T and

O/T three times a week in our home.) Or, am I being realistic in my

thinking that they still have two years of preschool ahead of them next

year. I just hate the thought of sending them off to school, getting

sick... as we know other people send their kids to school sick...and

something horrible happening to them. I didn't know if Lindsey was going to

make it through her seizure last week and the thought of losing them is just

haunting me right now.

Thanks for listening!

Kim - Mom to and Lindsey