Monday, November 16, 2009

Epilepsy Awareness Month

November is Epilepsy Awareness Month. I'd like to post this link to the 60 minutes profile that aired within the last month. I found it useful to watch. I also thought it was my responsibility to do my part to inform the masses.


Sunday, November 15, 2009

Thank you TEFRA

Thanks to TEFRA and the CADI Waiver, here's the benefits...

Van modification:

With the push of a button the seat pivots and lowers down to the same level as Dermot's stroller, saves my back a ton of wear and tear.

Home modifications:

Instead of ramps in the garage, that require a foot of length for every inch, we opted for short steps to get Dermot's chair in and out of the house, works great!

Bath lift

This one was a bit hard to stomach. It meant that I was relying on a machine to lift my son in and out of the tub. That's my job, right? Well I tried it for the second time tonight and it works just fine. Dermot was able to float and kick around for the first time in months. We've had to give him showers in his bath chair for a while now. Little boys need baths. Dermot can have them again, hooray!

Feeding chair

A few months ago Dermot was still eating his meals in an old Fisher Price high chair, he wasn't supported enough and he was way too tall for it. This chair allows Dermot to eat, play and move about the main level of the house with ease. The chair raises and lowers down to the floor, tilts and reclines and it has a tray for toys. This is by far my favorite benefit from TEFRA. Makes everyday life at home so much easier.

Last thing we've ordered and are still waiting for is the changing table. It's similar to one you might find in a pediatrican's office, but has a fancy jungle theme painted on it to match Dermot's room. Benefits are obvious, saves the back from bending down too low.

We will be set for a few years now. I fought off all of this equipment coming into my home for a long time because it meant yet another step away from normalcy. I had to get used to the idea. I have. I'm grateful for how much easier this makes my job as Dermot's mom. Please let me know if you have questions about the program or any of the equipment.

Friday, November 6, 2009

Before and after

"i can't imagine having a child with disabilites"

I get that a lot. So do my other special needs mamas. The truth is I can't imagine it either. Never in my lifetime had I even thought that it would be a possibilty.

If you've ever read the poem "Road Map To Holland" ( google it ), it describes the reality of having a child with disabilites like going to a country other than the one you planned on. I personally hate that poem. I think the author wrote it to make the people who don't have kids with disabilties feel better, comforted. Believe me, it's not at all like going to Holland instead of Italy. I've been to both of those places. They are not that different. Just the language and the food.

My worries before special needs:

Owen only slept for ten hours last night
Owen has a runny nose
Owen started throwing toys at other kids
This stroller doesn't fit in the back of my Mercedes Benz
Don't give him peanut butter before age three!
I hope I'm able to finish the book before book club meets
I wish my husband would come home so I can go to yoga
I have to remember to invite Debby and Sara over for the movie on Friday
What if Owen drops his nap before he's three?
Should I potty train at 2-1/2?
Should I let Owen wear a diaper or a pull-up to bed?
Is it okay to let Owen watch more than an hour of TV a day?
Am I ever going to wear this black bikini again or should I stick with the brown one?

My worries after special needs:

Is Dermot going to die?
Am I going to die before Dermot?
Is it okay to give Dermot five medications at a time?
This stroller doesn't support Dermot's head.
Will people treat me differently because my son is different?
Can I make it for three months without my nanny?
Am I going to have a nervous breakdown before age forty?
Do I have any friends that understand me?
Why aren't my old friends calling me as much?
Should Ryan be watching so much TV while I feed and care for Dermot?
How on earth can I bring all three kids to the park by myself?
When will I get a shower?
Should I be counting Dermot's seizures everyday?
Is the Depakote working?
I hope they can find a vein when Dermot gets his blood draw next Monday.
What will I do when Dermot is too big for me to carry?
What will I do when Dermot is too big for me to hold?
Will Dermot's brothers help him or resent him when they're older?