You Wouldn't Stare Into The Sun

Special Exposure Wednesday

Here we go again....More snow, no school....the kids have gone to school 1 day out of the last 12, and it's not looking good for the rest of this week.

Wondering

Finding aides, sometimes called personal care attendants, for our children with disabilities can be very challenging. Finding aides we trust with our loved ones is even more challenging. But I've also noticed another facet to that problem - finding aides for a child that is grown or nearly grown.

I had fewer problems finding folks to help with Ashley when she was small. Treating her like a toddler when she actually was a toddler made sense. Treating her like a toddler when she is an adult doesn't cut it. Helping a young child with toileting or bathing didn't seem illogical to the aides back then. Finding someone who is comfortable, truly comfortable, with those same tasks now that Ashley is an adult is not as easy.

Working with a child that sometimes has a temper tantrum is usually not a problem for an aide. Working with an adult who might also have a temper tantrum is not something many folks want to do. And, as our young children grow into tall adults, the pool of caregivers capable of assisting with positioning, mobility and 'behaviors' seems to shrink.

And then throw into the mix that I want my adult child treated like an adult, even if intellectually she may not be there all the time, and that pool of caregivers shrinks even more.

What strategies have you used to find appropriate aides/caregivers for your grown or nearly-grown child? Do you use different strategies now versus when they were younger? Are you happy with the available pool of aides for your child? If you could do anything differently, what would it be?

We Know

Those looks...the stares...

We've all experienced them. We're out in the community - that place where all the 'experts' say we need to take our children with disabilities - that place we WANT to take them and WANT them to feel comfortable. But the stares of strangers make both our children and us very uncomfortable, sometimes almost belligerent. I've tried several approaches myself to dealing with the stares - smiling back, asking if the offender has any questions, even the angry stare right back - but it usually makes no difference.

There are looks, however, that warm my heart and tell me everything is just fine.

It happened several times over Winter break. It happened just yesterday as I was shopping at a big box store.

Another parent or family member or person with a disability passed us in the community and their look said, "I understand. I know it is difficult. It is for me too. I understand the rudeness and your ensuing sadness or anger. These people who stare have no idea, no concept of what our lives are like, and they are unwilling to try to understand. In there eyes, we are not worthy of anything more than a rude stare. But they are wrong, and you know it. Your child, your family, your loved one is beautiful and a blessing. Rise above the stares. Keep smiling that knowing smile, the one that says we are the lucky ones, we are the ones whose life, though difficult, is also very rich. We know...We understand...We appreciate your worth and all you do."

And all that is spoken through a few seconds glance and a knowing smile.

And it makes my day.

Fear Overcome

I want experiences like this for Ronnie and Ashley...I need to figure out how to make it happen.

Happy Birthday!

Now I know what I will get Ronnie for his next birthday...

Special Exposure Wednesday

Then, there was this...A bit of a disappointment given all the hoopla before the storm.