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.

SNOW!!!

The kids are home today because school is closed - a snow day. Funny thing is, not a single snow flake has fallen. The weatherman is forecasting 3-6 inches, with the snow beginning to fall later this afternoon. I'm not sure why school was cancelled today, but this is the South, and that probably explains it!

So, what do you do with your child with special needs when it snows? My older children would be happy to spend the day on the couch napping (Ashley) or whiling away the hours with video games (Ronnie), but since we are coming off of a 3 day weekend already, I don't think they need to do anymore of those activities.

If you need some ideas on how to keep your children engaged during no-school days, check out these activities:

Snow Day Activities for Your Child with Special Needs

Snow Day Strategies for Children with Autism

Fun Winter Activities for Kids with Special Needs

Heaven with Eight Bumps

Saturday, we took Ronnie to visit with his long-time friend, Mark. Mark is home from RIT, and he and Ronnie had not seen each other since last August just before Mark left for college. Mark and his family live near Washington, DC, but more importantly, they live near Potomac Mills Outlet Mall and Ikea! So, you can guess what Chip, Ashley and I did while Ronnie visited.

I don't know how Ashley believes Heaven to be, but I'm betting it's pretty close to a store filled with Legos - a store that we found at the outlet mall! Needless to say, she was one happy girl...

Nooooo

Happy long weekend! This is how I am going to be if anyone tells me I have to do anything other than relax this weekend...

TechnoMom?

Yes, I am a computer engineer by trade and have been in the computer industry most of my adult life. But, I don't always feel very technology savvy. I try to keep up, but changing devices or services or whatnot all the time doesn't appeal to me. I want my technology to do what I need it to do, but I don't want to have to change all the time to get there. But some new technology does catch my eye, I try it, and I am impressed. The latest of those things involves my iPhone (a two year old model) and a surveillance camera.

Last summer you may remember that I was in the market for a surveillance camera. I had just switched to a new agency providing people to work as Ashley's personal care aide, and things were not going as well as I had hoped. I had some serious questions about some of the people that were given full and complete access to my home and who were responsible for the complete care of my child. I had that mommmy gut feeling that something was amiss. So I purchased two cameras, Dlinks, and set them up. The cameras gave me the ability to view what was going on in my home from anywhere using a computer, an iPad-like device, or my iPhone. And it worked. My suspicions were confirmed and we started the search for a new caregiver.

Over the recent holidays, though, I found another use for the camera.

The inexpensive baby monitor that I kept in Ashley's room, allowing me to hear what was going on in the middle of the night, stopped working. And even when it was working, it wasn't the best. It then dawned on me that I had the equivalent of a video baby monitor by using my Dlink and my cell phone. And it works great!

I now have my iPhone plugged in on my nightstand. The camera (and it is infrared for the dark) is on in Ashley's room and pointed right at her bed. I can hear and see everything that goes on. Now I don't have to wonder if the strange sound I heard was Ashley having a seizure. I don't have to worry if she needs me, because I can hear her "Mom, I need you" sounds. And if she is getting into mischief like when she decides to pull all her shoes out of the closet and play with them, I will know.

So maybe I'm not TechnoMom, but every so often technology does help me in ways I didn't anticipate. I love the cameras I have installed, even more so now that they serve multiple functions!

No Sewing Required!

We parents of special needs kiddos are pretty much exhausted all the time. No news there, right? I once had a doctor describe it to me as the 'intern life schedule.' You try and sleep when you can, only catching a few hours at a time. I honestly can't remember when I last slept straight throught the night, but I know it was at least 17 years ago (when I adopted Ashley).

We try so many things to help the exhaustion. We take cat naps when our loved one is napping. We close our eyes at work for a few minutes during our lunch hour. We go to bed earlier and earlier in an attempt to string together a few hours sleep before the first wakening of our child. Or, we sleep at odd hours.

So, take that kind of sleep life and throw in a healthy does of worry and stress, and it's no wonder I have trunks (not bags) under my eyes, and you probably do also. Even if I do get to sleep early and stay asleep for a couple of hours, the worry creeps in that first time I think I hear a whimper from my child's room, and it then continues to grow and mutate to the point where sleep was just a distant memory.

One of my goals in life now is to find ways to get back to sleep. Getting to sleep initially is no problem. I'm so exhausted that as soon as I am still for 30 seconds, I start to doze off. But even the exhaustion can't win in a battle against worry, so I need other techniques.

Taking a chemical sleep aid is not an answer. As you well know, we parents must be able to respond in an instant should there be a medical emergency. My reactions cannot be dulled by drugs or alcohol. I've tried 'going to my happy place' as some people have suggested. But the problem with that is my happy place also has a lot of stress. I think about a trip to the beach (my happy place). Then the listing starts - what will I do with the dogs? Is there a good medical facility close by in case my child has an emergency? Will the place we want to stay and visit be wheelchair accessible? etc. etc. to the point where my happy place isn't so happy anymore. But, I have come up with a solution - as I lie in bed, I wrap myself in an imaginary quilt stitched from the memories of special moments with my children.

For example, one square on my quilt is a picture of Ronnie's shy smile the day he joined our family and walked into his very own bedroom for the first time in his life. Another has the image of Ashley signing 'Mom' for the first time. And another has the pride in Chip's eyes when his middle school team won the Destination Imagination competition.

As you can imagine, with five children, now all young adults, there are plenty of memories for my quilt. And it never stops growing. My quilt is big and warm and snuggly with the memories wrapping themselves all around me. And it hasn't failed me yet in helping to get back to sleep. Perhaps it is just another way of counting one's blessings, but the image of the quilt wrapped around me gives another dimension to the blessings.

So the next time you wake and worry takes over, try making a quilt for yourself. See if it helps you as much as it helps me!

Special Exposure Wednesday

It's been a little chilly in our neck of the woods.  That's the water from the dog's water bowl.

Parading

This past Saturday, Virginia inaugurated a new governor. The new governor, many other dignitaries, and even Bill and Hilary Clinton braved the pouring rain with their fancy tuxedos and dresses covered by cheap ponchos and watched history unfold as the Democratic party commanded the day. But the most exciting thing had nothing to do with all the pomp, circumstance and history making. To me, the most exciting thing was watching both Ronnie and Chip march (roll) in the inaugural parade!

Here are some photos of Ronnie with his Sportable teammates!!

Happy 19th

Hard to believe, but Ronnie celebrated his 19th birthday last Friday!  The highlight of the day was his Hulk birthday cake...

Someone Has A Birthday Today!

Happy 19th birthday, Ronnie!!!

Surprise When I Least Expect It

Now that Ashley is soon to be 19 years old, I feel like I know her extremely well. I can read almost her every mood, interpret every raise of an eyebrow, and know full well what it means when she purses her lips together in an almost straight line. But none of that means that she doesn't still surprise me from time to time.

During the Winter Break, both she and Ronnie had appointments to visit the dentist. This was a new dentist for the both of them, but it is the doctor that both Chip and I have seen for over 20 years.

Ashley had been seeing the dentist at our local Children's Hospital, but the visits never went well. Everyone working there, including the dentist herself, talked in baby talk to every patient regardless of the patient's age. And, it was a large practice, with many, many patients, most of whom had special needs, and most of whom decidely did not want to be visiting the dentist. The overstimulation factor was off the charts.

Ronnie had been seeing a different dentist, an older gentleman with a smaller practice. Everything about the practice and dental visits felt 'old' to me. And while that fact concerned me, what bothered me the most is that the dentist never understood/cared/accommodated Ronnie's deafness. Even when asked to provide an interpreter, he refused. And, when his scheduler called the house one day to remind Ronnie of his next appointment, Chip answered the phone and told the scheduler that Ronnie could not talk on the phone because he was Deaf. But what the scheduler heard was 'DEAD'. Ronnie's file at the office was marked as 'deceased', and it wasn't until I called trying to schedule an appointment did we figure all that out.

So I decided to try both Ashley and Ronnie at my dentist. My dentist does not accept Medicaid insurance, but fortunately both of them are also covered on my private insurance.

I made the appointments, explained to the dentist that although Ronnie would probably do just fine, Ashley might have a difficult time (she always has at the dentist). But the dentist assured me he was up for the challege, and I anxiously awaited what I figured would be a challenging visit.

We arrived the afternoon of New Year's Eve. I took Ashley back first, and as I suspected, she refused to get out of her wheelchair and into the dentist's chair. But the dentist said, "no problem, I can work on her in her chair." At first, Ashley was a little skeptical, but as I hugged her (held her arms in place so she wouldn't hit anyone), and whispered in her ear, she actually opened her mouth. And she let the dentist clean her teeth! And she let him stick the little mirror thing in her mouth to check things out! And she learned how to shut her mouth on the little water spraying / suction thing!

I was shocked!!

The dentist said her teeth were in pretty good shape, but that she had a little tartar on the back left molars. He suggested a referral to an oral surgeon who does accept Medicaid and who routinely anesthesizes patients who need a little extra help, and who could scrape the tartar off.

The visit with the dentist was THE BEST EVER! Some of it may be due to the dentist's gentle nature or to the quiet of his small office or to the fact that Ashley is maturing or maybe a little of all that. But it worked. I was pleasantly surprised and very, very grateful for yet another person who 'gets it'!!!

Special Exposure Wednesday

Ashley, helping to put the Christmas decorations away.....

 

 

"Life From A Different Perspective"

Last week, I posted a picture on FaceBook of Ashley viewing the world upside down. She was playing with some Legos, and I included the text "Life, from a different perspective." After seeing the picture on FaceBook, a lovely young woman and former caregiver for Ashley, wrote the following poem, and it truly warmed my heart and let me know that my darling girl really does impact the lives of those who cross her path...

LIFE FROM A DIFFERENT PERSPECTIVE
For my very special friend, Ashley

I am as different as different can be
there is nothing or no one as different as me
I have different eyes that see different things
A different love that loves a different way
When I touch, I feel things differently
When I listen, I hear things differently
When I dream, I dream things differently
When I sing, I make music as different as differently can be

Different: Distinct, colorful, and unique

I am as colorful as colorful can be
There is nothing or no one as unique as me
I have unique eyes that see very distinct things
A colorful love that loves a very unique way
When I touch, I feel both distinct textures and curves
When I listen, I hear unique sounds of both treble and bass
When I sleep, I dream very colorful things
When I sing, I make music as unique as unique can be

I know you're wondering
And it's ok; I can teach you to be as "different" as me

---Olivia Jones

She's Baaaccckkk!

Well, the vacation is over. The parties have been celebrated, the Christmas decorations have been tucked away for another year, the candy has been eaten (well, most of it), the scale has been cursed (probably because of all that candy), and reality has hit.

School is back in session today, and I must return to work. No more sleeping in or staying up late. It's back to the morning craziness to get ready for the school bus, and the evening battles for an earlier bedtime. But it sure was worth it to have two weeks off!

We visited with family and friends. We saw a great Hollywood Costume exhibit at the Virginia Museum. We toured millions of Christmas lights at Lewis Ginter Botanical Gardens. We played arcade games at Dave and Busters. And we even managed to work in a dentist visit.

Here are a few pictures from our Winter Break...