Category Archives: Disability


Feeling stupid not generalizing

So this week, I had 2 typical experiences in new settings in close enough time, that they shined light on each other….

  1. Darin went to day camp and got in lots of trouble the 1st day. Then I figured out he didn’t have 1-on-1 support, that was added, and he was able to continue with daycamp.
  2. We tried putting Darin in a class at church, so we could listen to the sermon, and he lasted 10 mins… and Joel missed the rest of the service sitting in the hall with him.

And it clicked for me:
Church is the only setting where we try to put him in a class without 1-on-1 support, pretending in that setting he is typical.
We don’t do it at school, or day camp, or VBS.
But week after week, we are shocked it goes terrible at church.

Unfortunately, this realization was not accompanied by a solution.

Interestingly, the sermon at the church we visited today was about Act 6:1-13, where the 1st church had to address unmet needs within the church.

I wish this didn’t feel like a unique need that not everyone shares. I don’t want to be the one with the need.

What are other special needs kids doing within small churches?


Bring Heaven home!

There’s another Houston family working on adopting a child with Down syndrome!

I met Nancy at a recent DSAH conference & learned about Heaven!

They are in the early fundraising & approval stages but already have a giveaway that ends 11/30/11.
Donate $10+ & you will be entered to win!

Go here!

Urgent!!! Help save 2 boys with Down Syndrome from life in an orphanage

Listen to this amazing story!

A Houston mom, Julie Kehm, has 2 biological children… Lilah and Kai, who has Down syndrome & attends the Rise School with my son Darin.
Through Reece’s Rainbow, they found Peter, who has Down syndrome and is waiting to be adopted in an orphanage on the other side of the world. He will be their 3rd child, and 2nd child with Down syndrome. They have been planning for his adoption for months.
They also met Ty on Reece’s Rainbow – he lives in the same orphanage as Peter, and also has Down syndrome. They have been donating toward Ty’s potential adoption, and watching to see if a family picked him the whole time they have prepared to adopt Peter.
Last week, as they waited to get a travel date to pick up Peter, they decided they will be bring Ty home, too.

Summary: (Kai + Lilah) + (Peter + Ty) = 4 kids, 3 with Down syndrome!
Read Julie’s full version of this story on Around the World in Seven Months!

These people are God’s hands for these boys!

So let’s back them up! They need an extra $4,000 to bring both boys home… they just (on 11/25) received notice they need to be in eastern Europe on December 6, so they will travel on 12/3.

1. Donate here with Paypal.
2. Leave a comment on A Perfect Lily to enter a raffle for donating to bring Ty & Peter home to the Kehm family!

Texas Medicaid Waivers Explained

My job for the past 4 years has been case management for a State-program for people with disabilities. I work for a non-profit agency, not the State of Texas. We are the contracted communicators between the people & the government.

Arabella got on the same program I work for (called CLASS) after 5yrs 3months on the waiting list in 2007.
Darin got on a similar program in Feb 2009…

So I’m constantly learning more about both sides – government & the people – of the funding & services.

In an attempt to organize and share the info, I’m working on a website…
I need feedback, reviews and questions. It’s impossible to see your own blind spots.

There’s a button on the sidebar:
Texas Medicaid Waivers Explained

Please be gentle, but specific in your critic… If I put too much info, left gaps, etc.