Monday, January 31, 2011

Champions Every One

I yelled and cheered until I was hoarse, but he never heard me.

The crowd on the bleachers went crazy and stood up clapping, but he never heard them.

But I know he felt it all! After sinking a basket at the wheelchair basketball tournament this past Saturday, he would pump both arms in the air, and then immediately turn to find me in the crowd. He knows, really knows, how very, very proud I am of him - whether he hears me or not!

We drove to North Carolina, about 3 hours away, to participate in the tournament. There were lots of teams, and this was the first time Ronnie's team had ever played a real game. Until then, they had only played against each other. They learned a lot, and still had a great time.

They even played the world champion junior wheelchair basketball team. They lost but held that team from scoring until 9 minutes into the game. Their coach said that had never happened!

Way to go, Lazy Legs! You are all champions!

Friday, January 28, 2011

Wanting a Snow Cone, not a Snowy Day

I know it's only January, but I'm weary of Winter.

The grey skies, the dead lawns, the ice, the snow - they are all depressing me. I like winter, usually, but this year the longing for Spring has captured my thoughts earlier than usual.

I long for sun and warmth - daffodils and forsythia, not red berries and naked limbs. I want to smell citronella not fireplace smoke. I want to eat a burned hot dog from the grill not another hearty stew.

I want to shop for colors named melon, lime and raspberry - not greys and blacks and burgundy. I want the warmth on my skin to come from the sun not the radiator. I want to plan a vacation at the beach and not worry about shoveling snow from the driveway. I want sandals not boots with two pairs of socks.

I'm sure by August, I will be listing all the cold weather things I long for, but today Spring and Summer are my elusive dreams...

Thursday, January 27, 2011

Lazy Legz

Ronnie is working very hard on his braces/crutch skills. He has realized that the more he practices, the faster he begins to master walking with the crutches. This past weekend when he was practicing, Chip and I told him that he not only needed to learn to walk but that he also needed to practice dancing. He wiggled his behind a bit and was all smiles!

Then I showed him the video below so that it can serve as even more inspiration for him! (Coincidentally, the name of Ronnie's wheelchair basketball team is Lazy Legs, and the name of the dancer in the video is also Lazy Legz!)

Wednesday, January 26, 2011

Special Exposure Wednesday

Sometimes swinging is worth muddy shoes!

Be sure to visit all the other Special Exposure Wednesday shots at 5 Minutes For Special Needs!

Tuesday, January 25, 2011

Baby Steps

I learned long ago not to spend New Year’s Eve making a lot of resolutions. Even given a boatload of good intention, I would usually not follow through on my resolutions, and would then feel bad. But this year, I am quietly and gently trying to make a few changes in my life.

I’m trying to slow down a bit. With five children and a full-time job, life can seem to careen about at breakneck speed. And still, I wouldn’t feel like I was getting enough done or doing a good enough job at some things. So I’m trying to cut myself a break.

I’m lingering over meals just a few minutes longer. I’m not rushing to get off the phone when a friend calls and needs to talk. I’m spending about 5 minutes longer massaging Ashley’s arms and hands with lotion after her bath. I’m having a cup of tea and spreading a blanket over my legs on cold winter nights. And I’m not panicking if I don’t get my kitchen floor scrubbed each and every weekend.

Another thing I am trying to do is to separate myself a bit from people who present a negative presence in my life. I tell my co-worker who always imagines the end-of-the-world as we know it is fast approaching that I am busy and need to get back to work. I’m reading fewer blogs if the blogger has a tendency to focus on the negative. I’m trying to spend less time around people who ‘drain’ my energy, people whose life is an ALL-CAPS life EVERY MINUTE OF THE DAY.

I’m trying to smile more, rest more, enjoy the extra small things of life more.

So far, it’s working….

Monday, January 24, 2011

Don't Believe Them, Artie

I didn't start out as a Gleek, but I am now. I'm two seasons behind on the wildly popular show, Glee, but I am making my way throught Season 1 on Blueray right now. I am loving the show, and try to fit in a new episode whenever I can.

Today I watched two episodes. The first included a story about Rachel (the glee club's biggest star) getting very upset because she had tonsilitis. Even though her doctor recommended she have her tonsils removed, she just couldn't because she believed she would lose her singing voice. And in Rachel's mind, the only thing she has going for her is her voice. Without it, she feels she would be nothing.

But another glee club star, Finn, took Rachel to see a friend of his. Finn and his friend used to play football together. The friend, however, was injured and was paralyzed from the chest down. The friend convinced Rachel that she was more than just her voice, and that life, though different, wasn't so bad. Rachel bought it, and the episode ended happily ever after.

The next episode, however, seemed to send the exact opposite message. Artie, the glee club member in a wheelchair, succumbed to the flirting of one of the girls in the club, and decided he wanted to dance. Not just a different kind of dancing that involved his wheelchair, but real stand-on-your-feet dancing. The girl researched a lot of medical trials and convinced Artie that it would be possible for him to walk and eventually dance.

Then, unlike with the ex-football player from the previous episode, everyone, including teachers and guidance counselors, convinced Artie that he had to accept his limitations and stop dreaming of walking. The episode ended with Artie telling the girl that he wasn't going to walk, or dance, or even be able to sink a basketball. The girl danced with an able-bodied boy as Artie gazed sadly off to the side of the stage.

So why would the writers promote dreams and a no-limits lifestyle for one character, and then in the next episode have Artie accept that he was different and shouldn't dream? Maybe the answer will be revealed in later episodes, but for the first time, I really didn't like Glee.

Friday, January 21, 2011

Sweet 16

Ashley’s 16th birthday is fast approaching, and I would really like to be able to do something special to celebrate. But..

  • She doesn’t like crowds

  • Too much noise and too many lights can be overly stimulating for her

  • She has a very short list of foods she will eat

  • And she doesn’t have any real ‘friends’ because of the severity of her disability and the communication barriers presented by her deafblindness.

All those reasons are why we usually end up celebrating her birthday at home with just the family.

But I really want this birthday to be different – to be special – something she can remember always.

Any ideas????

Thursday, January 20, 2011

Breaking Out the #2 Pencil

This seems to be the season of surveys.

I’ve gotten one from our state’s program that supports students with deafblindness. They wanted to know what they could do to help youth between the ages of birth and 21 who happen to have deafblindness. That survey took me about 20 minutes to complete, and I’m betting my answers won’t be well-received.

A second survey arrived, this one from my community service board. The community service boards provides case management and other elusive services to people with intellectual disabilities. That one took me about 15 minutes, and again I’m betting my answers won’t be well received.

Then came the survey from my oldest daughter’s day support program. Of all the organizations that purport to provide support to one of my children, the day support program does seem the most interested in the clients’ and client family opinions. Over the years I have noticed positive changes.

Finally, my school district sent home a satisfaction survey. Each one of my children who are still in the public school system (4 of them) brought home the same ‘circle the most appropriate answer’ four page survey. Parents were told to return the survey within 15 days, but starting on day 5, we got phone calls, notes from teachers, and brain-washed comments from our children about returning the survey. I imagine a computer will read the responses and spit out data interpretations.

I appreciate that all these organizations are asking for my opinion, but I wish it were a little less structured. How about sitting down with me, or calling me on the phone so we can just chat?

An organization that provides post-adoption support services for my family conducted their satisfaction survey that way one evening this week, and I had a much better feeling about the whole process. Talking to a real person – a person whose name I recognized – was much better than filling in circles with a number 2 pencil.

I’ll just wait and see which, if any, of the organizations does actually make some changes….

Wednesday, January 19, 2011

Special Exposure Wednesday

I want to be a cat for just one day...sleep about 20 hours - get up and eat - go back to sleep - have someone walk by occasionally and rub my head - purr a bit - and go back to sleep. Just one day...

Be sure to check out all the other Special Exposure Wednesday shots at 5 Minutes For Special Needs!

Tuesday, January 18, 2011

Just Another Player

(photo by Danny Moloshok of the New York Times)

I admit that I worry about Ronnie being the only Deaf player on his wheelchair basketball team. From the first practice, I wondered how Ronnie would understand what the coach was saying and how the other teammates would communicate with him. When he plays in his first tournament at the end of January, how will he hear the referee's whistle and know that play is to be stopped?

But you know what? Somehow it all works out.

Ronnie does some lip reading. Chip and I do some interpreting. And the other players have learned to use gestures, taps on Ronnie's back, and other such signals to let him know what to do. Plus, Ronnie only needs a few moments to observe a play to understand it.

So, I've tried to back off the worrying. And today that got easier when I found the following two articles about Michael Lizarraga, a forward for the Cal State-Northridge men's basketball team. And, as the Times article points out, Lizarraga is not the only one to benefit from his being a part of the team!

Deaf Player at Cal State Northridge Has a Real Feel for the Game

Cal State-Northridge forward is the only deaf player in Division I

Monday, January 17, 2011

Happy 16th!

Ronnie's birthday was last Monday, and we had our family celebration that day. But this past Saturday, he had his official birtday party with his friends at Dave and Busters. It was great fun, and one thing made it especially great for him - his friend, Mark, from the town in which Ronnie used to live, came down with his family for the party!

Mark and Ronnie had gone to school together since kindergarten. Ronnie's move to Richmond would be the separating factor for the boys. They stay in touch via our video phone (both are Deaf), and in fact, spend at least an hour a day on the phone.

I had seen and talked to Mark on the phone, but it was wonderful to finally meet him in person along with his lovely family.

Although a couple of friends that had been invited cancelled at the last minute due to illness, Ronnie's girlfriend and another girl rounded out the party. They all had a blast, and I believe Ronnie had a wonderful day! Here are some pictures:

Friday, January 14, 2011


Someone remind me what it feels like to sleep through an entire night...

I haven't done that for almost 14 years now. I adopted Ashley on her second birthday, and she will very soon be 16 years old. That is the explanation for the 14 years of interrupted sleep.

I define a good night as one when Ash is only up 2-3 times. A bad night finds her up every hour. I'm not sure of all the reasons that she doesn't sleep well, but her seizures probably play a role as does the fact that she is blind. And some nights, it seems like she gets up just so I will come to her room for a visit.

Some of the time I can handle the erratic sleep schedule, and other times, it wears me down to the depths of exhaustion. I'm in deep right now...

So, when you go to bed tonight, if you say prayers, ask that God gives me the strength to weather the lack of sleep. I would ask that you pray that Ashley sleep through the night, but I know that if she ever did, I would still get up just to make sure she is still breathing!

Thursday, January 13, 2011

Score One for MickeyD's

I found this on YouTube and just had to share. I don't believe it is ASL, but it is something very similar. I just like the easy flow of the commercial and the thought of universal communication, even if it is about fast food!

Wednesday, January 12, 2011

Special Exposure Wednesday

One of our outings over Christmas break took us to a place called All Fired Up. Originally opening as a paint your own ceramics studio, the owner has since added glass fusing.

In glass fusing, you choose a base - either square or round - clear or colored glass. You then choose from many colors and shapes of glass to stack on your base. They even have child-safe glass pieces with rounded edges. Once your pieces are stacked and held in place with a little Elmer's glue, you turn your creation over to the owner for fusing. You can even have your artwork 'slumped' into a bowl.

So here is the beautiful artwork created by Chip, Corey, Ronnie and Ashley!

First, Ashley's sun catcher...

Then Ronnie's suncatcher...

Corey's trivet...

And finally, Chip's slumped bowl...

They all did a wonderful job, don't you think?

Be sure to visit all the other Special Exposure Wednesday shots at 5 Minutes For Special Needs!

Tuesday, January 11, 2011

Churches Musn't Neglect The Disabled

(Photo courtesy of Suzy Parker, USA Today)

This article from USA Today sums up everything I have tried to say in the past, but it does a much better job than I. Long time readers know that we have had a very difficult time finding a church home. I firmly believe that is because of the unique and severe disabilities my children have. I have yet to find a church home, including the Catholic church in which I was raised, that is willing to welcome amd include us in their congregation. The article linked below is well worth your time to read, but my favorite quote from it is:

"The fundamental question, disability activists say, is less what is in your congregational budget than what is in your heart."

Churches Musn't Neglect The Disabled

Monday, January 10, 2011

"Holy Cr*p, That's Amazing"

I found these videos over the weekend and love, love, love them, especially the classroom one...

Friday, January 7, 2011

Square Pants and All

Part of our school day routine is to watch an episode of Sponge Bob Square Pants while waiting for Ashley and Ronnie’s school bus. This morning’s episode found Bob very unhappy because he wasn’t normal.

Sponge Bob’s friend, Squidward, yelled at Bob about how abnormal he was, listing all the things that he (Squidward) found to be weird – Sponge Bob’s freckles, the shape of his body, the way he talked, how happy he always was.

Bob was crushed! He immediately embarked on a campaign to become more normal. He bought a book about how to be normal. He engaged a teacher who could help him learn to be normal, and he practiced and practiced being normal.

Once he felt he was normal enough, Sponge Bob headed off to work – all the square edges rounded, his speech more refined, his clothes just so. At first Squidward and Mr. Krabs, Bob’s employer, loved the changes. The kept complimenting Bob for taking the initiative to be more normal, and they complimented themselves on having the foresight to advise Bob that his abnormality was just wrong.

It wasn’t long though before Squidward and Mr. Krabs began to miss the Bob that they knew. The felt he was not just normal but also boring. They truly missed his “Sponge Bobness.” Finally, it was Patrick, Bob’s best friend, who told him that he was best when he was himself. Sponge Bob immediately worked to restore himself to his former fun-loving, shrill-voiced, square-bodied awesomeness, and the episode ended with everyone happy again, even Squidward, the show’s perpetual grump.

I don’t know about you, but I refuse to let my children be “taught’ or bullied into being something they are not. I love their quirkiness, the individuality, the way they look and talk and approach the world, and especially their happy natures. Even their “Sponge Bobness”!!

Thanks for the reminder, Sponge Bob!

Thursday, January 6, 2011

What Do You Think?

Over the years I have been blogging, I've done many posts about accessibility and accommodations. My recent post about Joey's Hot Dogs was one of those. My idea is to expand those posts and reviews, perhaps even into their own blog.

With aging baby boomers and more premature babies surviving, disability is becoming an even more recognizable state of life. I don't know about the specific areas in which you live, but in my area, I don't feel disability and needed access and accommodations are given much attention. The intent of my new blog would be to bring some attention to those things.

I will plan on one post a week about a place - store, restaurant, museum, school, park, etc - that my family and I visit. Then I will give you my opinion of both the accessbility and reasonable accommodations of each place. The places might be local businesses in my area, state parks, other locations to which we may travel, or chain establishments like Target, WalMart, McDonalds, etc. And I will also plan on sharing my review with someone at the location we visit.

So, what do you think? Is this worth doing? Would such information be valuable to you and your family?

Wednesday, January 5, 2011

Special Exposure Wednesday

Ashley is getting so brave around animals. I couldn't believe she sat this close to a llama at the zoo we visited during Christmas break. And what was even more amazing, and of course I don't have a picture of it, is that right after I snapped this picture, Ashley reached up with both hands and held the llama's face!!! Not bad for a child that is deafblind!

Be sure to check out all the other Special Exposure Wednesday shots at 5 Minutes For Special Needs!

Tuesday, January 4, 2011


Before Ronnie joined our family I knew almost nothing about spina bifida. Once I knew he would be joining our family, I did a lot of research and read some very scary things.

Having been through a lot of equally scary things with both Ashley and Jessica, I knew I was up to the task of being his mother and his lifetime advocate.

I have always chosen my children with special needs. I have approached their adoptions fully aware of the challenges we all would face, and the choice to proceed with the adoptions were always mine.

But what if you were a first time parent - a parent who has just been told only a third of the way through your pregnancy that your child would have spina bifida? What would you do?

The video below may help families answer that question.

The McGinley family struggled to become pregnant. After many struggles and miscarriages, their dream was realized and they became pregnant with twin boys. Just a few short months later, their lives took yet another turn when it was realized that one of the boys, little Elijah, had spina bifida.

The McGinley family, along with other families, have put their feelings, their thoughts, and their journey to spina bifida into the video below. Their efforts, labeled Project Eli (Every Life Inspires) and this special documentary is about parents being prenatally diagnosed with spina bifida.

If you have a child with spina bifida, are pregnant with a child with spina bifida, know someone who has a child with spina bifida, or are just interested in learning more, please take about 30 minutes out of your busy day and watch this video. You could even substitute another severe disability for spina bifida and this video's message will still move you.

Monday, January 3, 2011

Love Joey's!

Our plans for a Christmas break spent in the Outer Banks of North Carolina didn't work out, but we did have a wonderful time exploring our home city. We went to the zoo, played games at Dave and Busters, made glass creations at a place called All Fired Up, and ate at an awesome hot dog joint.

Joey's Hot Dogs used to exist in the corner of an Exxon gas station about a mile from our house. I had heard about how good they were, but eating at a gas station just held no appeal for me. But a few months ago, Joey graduated to a real section of a strip shopping center, and we had been wanting to try it.

We actually went on New Years Day. There were no crowds when we arrived, but people did start flowing in before we left. The hot dogs were every bit as good as I had been told, but the experience was even better.

Joey's is a small place crammed with tables and chairs. Chip told me before we went in that we would have a tough time moving two wheelchairs about. It was almost as if he was warning me so I wouldn't get upset once we did go in (what? who me?)

But I was very pleasantly surprised. The owner (Joey?) and his helper were wonderful. They helped us moved some tables, asked what we wanted (instead of having us go to counter like everyone else), brought our drinks to us, and the absolute most important thing? They didn't stare!!

The whole experience was a perfect example of accommodations being made, not singling out my family, or acting exasperated that we required some changes. I felt like we were a normal family, out for a normal lunch, and that we were welcomed by the establishment. Go figure.

So Joey, we loved your hot dogs and your apple pie a la mode, but we love you and your business even more. We will be back!!