Singing The No-Video-Game Blues

Having three sons means that I have had my fair share of video game obsession "issues." Chip and Corey, the two oldest, have finally come to terms with my feelings on the subject, but Ronnie is still learning.

Ronnie earns video game time by completing daily chores. The chores are not difficult, but they are things he must remember and complete without being told. Included are brushing teeth at least twice a day, remembering to take medicine (which is already portioned out into a schedule box for him), doing his laundry at least once a week, cleaning his room at least once a week, and loading and starting the dishwasher after dinner each night. Performing those chores without being told is what gets him video game time. He has said repeatedly that he understands that.

His average earned time is about 14 hours a week. That sounds like a lot to me, but as long as he is getting the chores done and doing schoolwork, I can live with it. His time resets weekly because he keeps a weekly chart of chores completed. So, on Sunday he is looking at a balance of 14 hours of video game time.

Unfortunately, he has not learned or chooses not to budget that time across the week.

This past Sunday, when he played for three hours straight, I reminded him that he only had 14 hours for the week. He said he understood. As I noticed the banked hours diminishing rapidly early on in the week, I reminded him again. Again, he said he understood.

So here we are at Wednesday evening and his video game account is empty. And he is whiny and angry. I talked to him about the budgeting again, and reminded him that he said he understood. He just signed "whatever" and went into his room to pout. And being frustrated about no video game time spills over into other parts of the day, and he basically turns into Mr. Cranky Pants.

I'm sure he will learn to budget his video game time eventually, and we do need to work on the cranky pants attitude, but I'm just going to consider this all part of his homeschooling efforts for the summer!

On a Boat Looking at Boats

When we were visiting the beach two weekends ago, the temperatures were in the 100's, and the heat indices were around 110 degrees. That was even too hot for the actual beach. So, we tried to find things to do indoors, in air conditioning.

One of the places we decided to visit was Nauticus, in downtown Norfolk. According to the Nauticus website "NAUTICUS inspires and educates with engaging & interactive experiences that celebrate our connections with today's maritime world. Nauticus is a contemporary museum that uses the natural setting of Norfolk's harbor to showcase global maritime commerce and the world's largest Navy."

I worried that it might be a little too history intensive, and therefore, boring for Ashley because she prefers more interactive museums. But it was great! One floor of the museum's three floors was dedicated to marine life. There were lots of exhibits of fish, crabs and the like, and Ashley even got to touch a horseshoe crab.

Affiliated with the museum is a boat tour of the Norfolk Naval Station. The boat had both an air conditioned section and an upper deck that was outside. We chose the air conditioned section, and had some wonderful views of the Naval Station. We even saw the USS Enterprise! Here are some of the pictures Chip took of our visit:





This is Ashley signing "BOAT":









I'm not sure how Ronnie felt about being on a boat, but Ashley loved it!

Hilarious...Sort Of

Two weeks ago, the receptionist from Ronnie's dentist office called to let us know that it was time to make his next dental appointment. I was at work, but Chip answered the phone. The receptionist asked for Ronnie.

Chip said, "He's deaf."

The receptionist apologized profusely, and just kept saying, "I'm so sorry." Chip thought it was a little strange, and so did I when he recounted the conversation to me. But we're both used to people making strange comments when confronted with a person who has a disability, so we just shook our heads and didn't think anymore of it.

Two days later, I called the office to schedule the appointment, and was given 10am yesterday.

Chip took Ronnie yesterday morning, and when he arrived was told that Ronnie didn't have an appointment. He texted me, and I assured him that I had spoken with someone at the dental office, and we did indeed set up that time. The receptionist insisted that we hadn't, and said the doctor couldn't see him at that time. I asked Chip to just reschedule, and that's when the 'mystery' was revealed.

During the initial phone call when Chip said Ronnie was deaf, the receptionist thought he said 'dead.' Ronnie was marked deceased in their files, and thus the appointment didn't show on their schedules. It then became very clear why the receptionist kept saying how sorry she was during the phone call with Chip.

The dentist did decide to see Ronnie yesterday morning, perhaps feeling very bad about marking him as 'deceased' in their file. As least we didn't have to reschedule!

Special Exposure Wednesday

Wondering what to do with your teens over summer break from school? Put them to work making dinner! Ronnie made us some wonderful baked beans - the best I've ever had - for dinner Monday night.

Not So Swimmingly

Ronnie loves to swim in our neighborhood pool. It opened this weekend, and already he has been there three times. But, I have an issue that may keep him from the pool unless I can find a solution.

Because of Ronnie's spina bifida, he is paralyzed from the waist down. He has no feeling in his legs and feet. When he first joined our family and went to the pool, I noticed that afterwards his feet and legs were pretty scratched up. But he had no idea because he couldn't feel anything.

We tried swim shoes, and after one or two trips to the pool, they were in shreds. Then we moved on to Converse sneakers. Again, after just a couple of trips into the pool, the canvas was shredded and the toes on his feet were scraped up. This year, I have tried scuba diving boots.

The boots were a recommendation of his physical therapist. In addition to being a little thicker than regular swim shoes, they would offer a little flotation and hopefully that would keep his feet from dragging on the sides and bottom of the pool.

But, after three visits this weekend, the scuba boots are starting to shred. And at $60 a pair, I just can't afford a new pair every week for him. Surely though, he's not the first person to face this issue.

So if anyone has any ideas, Ronnie and I would love to hear them. It will break his heart if he can't go to the pool this summer.

Mr. Debonair

The prom was a huge success for Ronnie! It was hard for me to tell what made him happier - having a senior girl ask him, getting all dressed up in a tuxedo, or dancing the night away. Here are some pics taken by my son, Chip, the burgeoning photographer...

The Bequest

Family heirlooms are not always made of silver and gold.

The tuxedo originally belonged to my Uncle Joe. He was the only one of 13 siblings who had a need and money for such a luxury back in the 50’s. Uncle Joe passed away in 1972, and when his siblings were helping to sort out his possessions, my father took the tuxedo.

The tux hung in my parent’s guest room closet for many years covered in silk to keep the dust at bay. I asked one day if I could have it to wear to a fancy event. I paired it with a ruffled blouse, and at that time, was very much in fashion in such an outfit.

Then the tux hung in my closet for many years. A friend borrowed it for her son’s school play. Another friend borrowed for a last minute school dance need. After each use, it was sent to the cleaners and then hung in its silk and moved back to its closet.

And now it is coming out again.

Ronnie was invited to the senior prom by one of his girl friends. As a sophomore, he couldn’t attend without such an invitation, but everything is set for this Saturday night. He will don the family heirloom for his night of revelry. He tried it on and it was a perfect fit. I don’t know how it has always been a perfect fit for everyone who needed it, but it has.

I don’t know what the future holds for this tuxedo. It still looks brand new, and because of its very classic style, it’s as chic now as it was in 1950. Ronnie looks so handsome in it, and I am thrilled that it is seeing a third generation in my family.

Rain, Rain Go Away - At Least for 15 Minutes

Okay, we've had enough rain now. It needs to stop.

Mother Nature, do you understand how difficult it is for kids with canes and kids with wheelchairs to get around in the rain? There's no such thing as making a mad dash for the school bus in the morning.

Ronnie's wheelchair wheels throw water up on his arms and even with an umbrella being held over him, his legs still get soaking wet.

Ashley can only go so fast with her cane and holding on to my arm. Running frightens her, and she can't see the puddles that she splashes in. She starts the school day with wet shoes and socks.

I know we need the rain, but couldn't it just stop from 7:45 am until 8:00 am? Then the kids could get on the bus dry, and alight under the cover at school, staying dry and comfortable.

My lawn thanks you, Mother Nature. My newly planted garden thanks you. But, my kids don't.

Worth Another Try

When Ronnie was 4 years old, eleven years before I would adopt him, he received cochlear implants. When he joined my family, he still had the implants but none of the external processor parts. The few times he talked about the implants, he would say that he didn’t like them – that they were way too loud.

Personally, I have never been an advocate for implanting every deaf child. I don’t see deafness as a disability but rather a cultural state. I have never suggested that any other family not get an implant for their child, but for my family, it didn’t seem the right choice.

But now Ronnie is saying he wants to try his implants again.

Although I have no records from the time he was 4 years old, my belief is that there was little to no follow-up after his initial implantation. And, based on what I have read, follow-up is key to success with cochlear implants. So I wonder if now, with appropriate follow-up, implants could be of some benefit to him.

I contacted the doctor who did his implants at age 4. I spoke with both the doctor and the doctor’s audiologist. They gave me the contact information for ordering the external parts Ronnie would need, but then really tried hard to discourage even trying the implants again.

They said understanding and using speech would not be possible at age 16 – that all language development occurred by age 5. They said he might be able to hear some environmental sounds, but they wondered if that would be worth it to him.

Since then, I talked to Ronnie, to his teacher, to 2 speech therapists, and to an interpreter, and the overall opinion is that trying again would be a positive thing. It’s true that he won’t use speech and will still use sign language, but that he could hear some things that everyone believes he would really like to hear, most notably music.

So today I am calling the manufacturer of his specific implant and ordering the pieces we are missing. Since we will be relying on Medicaid to fund this, it may take a while. In the meantime, I would like to hear opinions from people who were implanted (or had their implants turned on) when they were older.

What were the challenges? What did you do to overcome those challenges? Do you still use your cochlear implants, or did you decided after trying that it wasn’t for you? And anything else you can think of…..

A Lot of Thank You

Ronnie gave me the sweetest Mother's Day present. It was a small bowl in the summer colors that I like so much, filled with candy and a handful of small cards - about the size of business cards. On each one, he wrote a 'Thank you' note.

Here's a picture, and then the 'Thank You' notes...I think he's a keeper, don't you?!



"Thank you for helping the State of Virginia at your job"

Our family makes lots of dirty dishes. Thank you for washing them"

"I like it when you make cake for me"

"Thank you for giving me a home and for giving me a good life"

"Thank you for talking to me and using sign language"

"I think you will take me to find out about my implants"

"Thank you for letting me play baseball in June"

"Thank you for buying me clothes. Buying clothes is expensive"

"Thank you for driving me to basketball. I like playing with my friends"

"Thank you for doing lots of laundry for us"

"Thank you for buying food for our family"

"Thank you for driving me to many doctor appointments"

"Thank you for driving me to PT so I can learn to walk"

"Thank you for cleaning the house"

"Thank you for taking care of Ashley, Corey, Chip, Jessica and me"

'Knee'ding Some Advice

Ronnie is struggling with his braces and crutches. He has said many times that he wants to walk, and because of that, I ordered the full hip to foot braces and a set of crutches. But as therapy approaches each week, and anytime I tell him that it is time to practice walking, he balks. He will tell me that he doesn’t like therapy and doesn’t like walking, but once we are there, he tells the therapist he likes walking. Teenagers!!

I think the reason he is so torn is that learning to walk is hard. And, in my experience with four other teenaged children, tackling something hard is not their first choice. I need to help him understand that while it may be difficult right now, the end result is something he has really wanted for a long time. Unfortunately, that end result may be well into the future. So there’s that teenager thing again – learning to walk with braces and crutches doesn’t provide instant gratification.

When Ronnie is at school, he uses his wheelchair exclusively. When he is at home, he likes to stay out of the chair and scoot around the house on his knees. He’s very good about vaulting himself up into chairs, onto the couch, or into the bathtub. But when he leaves those places, he also vaults himself onto the floor onto his knees. And his knees are starting to complain.

He told the therapist last night that walking was making his knees hurt. After a thorough exam, the therapist convinced him that walking was not the problem, scooting and landing on his knees was. I am going to get him some heavy duty knee pads – the kind like contractors use when laying floor – but he has some decisions to make.

Does he want to walk around the house or roll around the house? I worry that he will choose rolling and over time, severely limit his options for anything else. And the last thing I want is for him to regret never having learned to walk – a regret this his teenaged self may not realize at this moment.

So here I am asking for advice again. Have any of you faced a similar issue, especially with the braces and crutches, and if so, how did it all play out with your child?

What a Difference a Year Makes

What a difference! Last year’s IEP meeting for Ronnie included 20 people, 2 of whom were attorneys. The meeting was contentious to say the least and ended with Ronnie’s former guardian ad litem being removed from the school premises by the county police. This year – 5 people, all smiling, all in agreement, all satisfied with the final IEP document and all the decisions that were made.

Instead of listening to the guardian ad litem talk about what a poor, mentally retarded child Ronnie was, I heard this:

• He has made such progress this year!


• The test results from before that showed he was borderline to moderately cognitively impaired were all invalid because the tests that were used were not normed for a child that was deaf.


• Any deficits he does have in reading and writing are due in part to his deafness and use of ASL and in part to his not receiving appropriate services in the past.


• He’s the happiest kid at the school!


• He wants to go to the culinary arts technical center, and we think he should.


• He’s the best basketball player on the team.


• We’re so proud of him!

Of course, Ronnie and I were both beaming through all of this.

There are going to be some changes in his program, but he and I agree that they are changes for the better. For example, my school district has had Deaf children (both oral and signing) spread throughout the county in several different schools. A new high school just opened this year (described by one person as a palace), and it will house the entire Deaf program. While I am a staunch advocate for children with disabilities going to their home schools, it does make more sense for Ronnie to be in a Deaf culture environment, an environment where he doesn’t have to struggle to communicate with his peers.

The new high school is just a little further away from our home than his current, very old, campus style school. The new school is not a campus school, meaning he will not have to contend with hilly sidewalks and bad weather while traveling about the campus in his chair. All his Deaf friends that currently attend the current school with him will also be moving to the new school.

He is excited and so am I. He is also going to tour the school and report back to the administration staff where any improvements in accessibility can be made. We also agreed that he would create a year-long project involving students with disabilities, and that as a result of that project, he would apply to be a delegate to our state’s Youth Leadership Forum next summer.

Oh, and he also said he is ready to learn to drive!!!

Fun times ahead, and I am so very proud of him!!!

Paralympian in Training

Saturday was Paralympic Experience Day in our city. Sponsored by the US Paralympic team and Sportable, the local organization that runs the wheelchair basketball team on which Ronnie plays, athletes with disabilites were invited to try out some of the paralympic sports.

Ronnie had a blast!

He tried track and field events, including the javelin throw. He did such a good job that the Paralympic coach said he should definitely consider competing.



He also tried the racing wheelchairs and even had a chance to race Anjali Forber-Pratt, the world champion in the 200M and double bronze medal holder from the Paralympic Games in Beijing, China.





Ronnie really is athletically talented, and I can see him participating in the paralympics one day. We will start that journey with his participation in the 2011 Mid-Atlantic Wheelchair Games, held in June of this year.

Gotcha!

This week we celebrated Ronnie's Gotcha Day. Exactly a year ago, my handsome son came home to his new Mom and his brothers and sisters.

It's been a year of surgeries and health issues - first girlfriends and joining a sports team for the first time. It's been a year of learning to trust and believe, a year of accepting that many people love you.

Through the year, Ronnie has dealt with his feelings of loss, his fear of the new and unknown, his insecurities and his apprehension about whether this truly will be his forever home.

I hope he's starting to believe that he really is home, that I will always be here for him, and that he is my son - wholly and completely.

All our lives changed a year ago, yet it seems like this was always the way our lives should be. He was my son before we ever met, and I will always be his mom. Whether the word is destiny or fate or a word involving divine intervention, I believe our lives were pre-ordained to be together, and I am so very thankful that we are.

Happy Gotcha Day, dear Ronnie, and always know that I love you - always have, always will.

Somebody's Smiling!

Ronnie got a big surprise when he got home from school yesterday - his very own basketball wheelchair! He had been borrowing an old one from the organization that sponsors the wheelchair basketball team (Sportable), but as of today, he won't have to borrow one any longer.

I think he's just a little bit happy!!

Chip got it all put together for him before the bus arrived, including the big red bow!



Then we made him close his eyes while we brought it out of hiding...



And there's the smile!!!



He then had the chance to try it out at basketball practice! (That's his volunteer interpreter standing.)



He's very happy - especially with how fast it can go :)



Way to go, my handsome son, way to go!!!!

The Lure of the Open Road

Virginia Tech University has been working with the National Federation of the Blind to develop a vehicle which can be driven by someone who is blind. From a prototype in 2009 to driving the Daytona Speedway in January of this year, it’s truly amazing to watch.

The Today Show did a feature this past weekend on the car and the driver, and if you didn’t know better, you’d swear the driver was not blind.

Here is a YouTube video that explains the technology behind the vehicle.



And here is an article that appeared in Collegiate Times

When Ashley finds out about this she will be pestering me to get her one!! She is my child who would love to jump in the car and go driving everywhere. She is also the one who would probably get a speeding ticket within the first week of driving.

But the child I want to convince to learn to drive is Ronnie. He’s not blind, but he believes that he cannot ever drive because of his spina bifida and the fact that he uses a wheelchair. I tell him all the time that there are special hand controls for cars, and he just signs, “silly, no there aren’t.”

So where does a person that needs to use hand controls for a car learn to drive? Perhaps if I could show him such a place, he would believe me. Confidence and belief in his abilities are not his strongest points, but I aim to change that!

Oh, and one more thought, how would a blind person get a driver’s license if they can’t pass the eye test given at DMV???

Crashes and Smiles

Want to know how to make a mother's heart skip not just one beat, but many, many beats? Tell her that her youngest child is going to play wheelchair rugby!

Wheelchair rugby is a cross between basketball, football and soccer with a whole lot of bumper car thrown in. Think crashes, spills and super fast wheeling. Ronnie did a marvelous job - I was a nervous wreck!

Here are some photos my son, Chip took during the scrimmage:

Worlds of Difference

Ronnie's urologist and nephrologist are both affiliated with the same big teaching hospital in our city. Their offices are one floor apart, but it feels like we are in two entirely different medical facilities when visiting the doctors.

The urologist is not all warm and fuzzy, but he and his staff are the most disability-aware medical team I have ever had the pleasure of meeting. I reviewed this doctor's office for my www.ustooplease.com website because I was so impressed.

And, I plan to review the nephrologist's office, but it will not even come close to being as positive a review.

Ronnie has seen this doctor twice now. We had to switch to a nephrologist who primarily sees adult patients because the pediatric nephrologist moved away. I really like the doctor - he is personable and warm and even a little quirky - but his disability awareness is very poor.

I requested an interpreter for Ronnie for each of his two visits. Neither time was an interpreter present. When scheduling Ronnie's next appointment, I tried again today to make sure that an interpreter would be available. After fussing loudly that no one has shown her how to order an interpreter, the scheduling person said it was the nurse's job to do that. Say what? The scheduler had no idea how to even start. I had to tell her what department of the teaching hospital handled such requests and I even had to tell her the director's name to contact if she needed assistance. Fortunately, I knew that information because my family frequently visits the medical offices at the hospital. But how would a first time patient know to do that? Would they, like Ronnie, have to see the doctor and not have a clue what was being said?

When I mention to the staff that Ronnie is Deaf (after they talk to him and appear baffled that he doesn't respond), they then just stop talking to him. All conversation is directed at me. I keep signing back to Ronnie, but he should be able to handle most of his own appointments now that he is older. The medical staff doesn't give him the chance to do that.

Unlike at the urology office where Ronnie and I feel valued and respected, I feel like we are a bother to a lot of the staff at the nephrology office. Since Ronnie and I do like the doctor, we are going to keep trying, but the staff needs to realize that they don't want to get me too angry. Just ask my school district special education staff.....

Deaf Like Me

I know it may not seem like such a big deal to most people, but when Ronnie sees a Deaf person signing on TV, he gets so excited. We saw this commercial for the first time this past weekend. Another interesting aspect of this was that the commercial aired during Amazing Race where one of the contestants is a young man who is Deaf.

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!