Parents with Purpose

I'm not really good at the whole yard sale thing. I've never had one of my own. I tend to either donate most things to Goodwill or if it's worth it to me, i'll sell things on Craigslist.

However, there is a ginormous yard sale that will be happening next Saturday, April 19th. It's to benefit these kids in our church congregation:

Four families in the Falcon Ward need help for
their children with special needs ...

Charity Fundraiser Garage Sale
Saturday, April 19th - 8am – ???
Falcon

* * *

Ways You Can Help:
Donate your unwanted items to the garage sale. Call xxx-xxxx to arrange drop-off

Come to the garage sale & find some treasures to buy!

Make a charitable donation to the Memorial Fund for Cora Sxxxx at any ENT Federal Credit Union

Our goal is to raise $2500 to cover the cost of travel, Brain Development Seminar, and individualized evaluations by a Certified Child Development Evaluator. Learn more about this program at www.parentswithpurpose.com. With your support, we will be able to improve these childrens' quality of life and help them face their individual challenges.

Meet the Kids:

Cora (15 months)
was born with a rare genetic disorder, Macrocephaly Capillary Malformation. She struggles with seizures, developmental delays, poor vision and low muscle tone.




Ethan (3 ½ years)
was diagnosed with Autism in August 2007. Ethan struggles to interact socially, communicate ideas and feelings, and develop relationships with others.



Preston (4 months)
was born with Trisomy 21, also called Down Syndrome. He is working to overcome pulmonary hypertension as well as physical and developmental delays.



Summer (6 years)
has Pachygyria, a brain malformation where instead of having the folds and wrinkles on the cortex of her brain, hers is mostly smooth. She has many developmental delays, poor muscle tone, sensory issues, and attention problems which vary with each stage of growth.

Initially, I was just interested in helping out my friend Alicia (Cora's mom). I have plenty to donate and extra time on my hands since i'm not working. But then i looked into what these families are trying to accomplish. They are flying out a Child Development Evaluator who teaches a Brain Development seminar and then does one-on-one evaluations with each child. It's $600 per child. She can cover the whole spectrum from well-child to learning disabilities to more severe problems. I so wish i had posted about Bode back in November because he was doing so very well. But after a winter of being sick and out of routine we just can't seem to get back on track. I've taken him back to OT where she says how wonderful he is doing. I think he's just very comfortable there--he's been seeing this OT since he was 2 1/2 and i think somehow what she's done for him in the past just isn't transferring over into his everyday life. His sensory issues are back with avengeance, he's struggling with transitions and i feel like banging my head against a wall--repeatedly. Per his OT, she has said that "once the sensory issues have been addressed, he shouldn't regress so much." So yes, it's expected that he'll have a bad day or two, say, after Spring Break. But it shouldn't be such a problem. He keeps cycling from "doin' good" to almost back to square one. So i don't know what's going on.

Back to my point. i looked at the website of this woman they are flying out. I'm always happy to have another opinion, another person's insight. And i realized that this is really a unique opportunity. I spoke to Alicia and asked if it was too late to jump on the bandwagon and have Bode evaluated. She said i could and so i signed up. I'm not comfortable taking money from the profits of the yard sale (some of these kids have such severe problems i don't feel like it's right for me to do so. I don't go to the doctor all the time, or have PT, MT, OT every week or have maintenance meds to pay for each month; etc.) but i am really interested to hear what this woman has to say and what her suggestions for interventions might be.

The Child Development Evaluator will be here for a week starting May 3rd. In the mean time, wish us luck. I've been totally impressed with people's generosity (knitting machines! a collector's pinball machine! a canoe!). So here's hoping!