Seeking Olympic Sponsors

Pictured right, Australia and Canada playing a wheelchair rugby game

Ronnie loves playing so many different sports - basketball, softball, rugby, track and field - and every sport needs a different type of wheelchair. Throw in a 'street' chair for everyday use, and I would have to build a new wing on our home just to hold all the chairs.

I have been known to grumble a bit about that. I always wondered if the chairs were really all that different. Couldn't accessories just be added to a basic sports chair to make it work for all sports? The answer is, of course, no, but I never really understood the design implications as to why the answer was no.

Then I found this video called Engineering for Mobility, and it all became clear. We still can't buy a different chair for each sport Ronnie wants to play, but we all know now why a specific chair would be a real plus. Maybe when Ronnie goes to the Olympics he can find a sponsor to buy all his chairs!

Kidney Health

Sometimes you can do everything right, and things still don't go the way you want.

Ronnie visited his nephrologist last week, and the blood work numbers weren't good. His creatine level, what I understand to be a measure of kidney function, has been slowly creeping up. As of last week, the numbers were double what they should be. The doctor said that despite the bladder augmentation surgery Ronnie endured two years ago, his kidneys, especially his right kidney, are not doing well.

Ronnie follows a very strict diet. He takes hands full of medicine three times a day. He cathes on a schedule set by his doctors. Yet still, his kidneys are not responding.

If Ronnie's birth parent had heeded the call of the medical professionals rather than the call of her pusher, or if Ronnie's foster parents had followed through with his medical care, he would not be facing these kidney issues now. But none of that happened.

It is what it is. We will do whatever is required to maintain Ronnie's kidney health as long as we can, and then we will get him on the kidney donor list. I haven't heard good things about that list, and that folks can wait many, many years on it, but we will deal with that also when we need to.

Ronnie has a bright future ahead and really doesn't need this...

Famous

My city has been hosting the National Veterans Wheelchair Games this week, and that has provided many opportunities for Ronnie and his team mates to interact with the veterans.

Kid's Day was held on Wednesday, and Ronnie and the other kids were each paired with a mentor. Check out this page on the Department of Veterans Affairs website where Ronnie's Kid's Day mentor shared his thoughts:

"Man, that kid is incredible!"

Sport

First there was basketball. Then came lacrosse. Now it's softball...

(Do you know why the ball in wheelchair softball is bigger than the normal softball? I didn't. I was told it is because the players can't wear gloves because they need to be able to push their chairs - thus the ball has to be bigger so they can catch it. Interesting!)

Pushing Independence

I LOVE, LOVE, LOVE the new show on the Sundance channel called Push Girls. It's a reality show about four women who are friends and who happen to use wheelchairs. It reminds me a bit of the show Switched at Birth on ABC Family in that the focus of the show is not wholly on disability. Disability happens to be a part of the women's lives, but only a part.

I asked Ronnie to watch Push Girls with me last night because I wanted him to see how independent the women are. Ronnie is used to people doing a lot for him. But if he wants to meet his goal of independent living anytime in the future, he needs to switch his perspective. I believe watching this show might help.

After the show was over, he told me he like it and thanked me for telling him about it. Whoa! Might that signal a bit of progress????

Here is a great review of the show by NPR...

Push Girls - A Fresh Take on Women Riding on 26 Inch Rims

Special Exposure Wednesday

I'm still having a very hard time convincing Ronnie he is capable of more - capable of independence - capable of achieving a life of normalcy despite being in a wheelchair. Talking to him about it doesn't seem to work, so I decided to have him do some things he probably had never thought of doing. Maybe if I can string enough of those things together, he will finally understand that he won't need someone to take care of him for the rest of his life.

This past weekend, he worked on sweeping off our basketball court and watering our plants. Sometimes he has to figure out new ways of doing things, but so far he always has.

He's got a ways to go to find that belief in himself, but I know he will get there!

It Happened Again

Back in 2009, I wrote a post about a phone call I received from a Navy recruiter. This recruiter wanted to talk to my daughter, Jessica about her plans for when she exited school. It was obvious while I was talking to him that his purpose was to recruit her for the Navy.

Well, it's happened again. This time it was an Army recruiter calling for my son, Ronnie.

My son, Chip had answered the phone and again, the recruiter starts his speech and makes it difficult to get a word in edgewise. But finally, the recruiter took a breath, and Chip started talking. He described Ronnie's deafness and spina bifida, but said he was a great kid and would be a real asset to the Army. The recruiter got very quiet, and then apologized for calling.

Perhaps the recruiters just get lists of students from the high schools. Perhaps the recruiter knew that I had another son who had joined the Army after high school. But however the information was received, can't the recruiters be a little more sensitive before making these phone calls? Couldn't they ask the schools to mark any students that should not be considered candidates for the service? I am the last person to want to apply labels to people, but in this case I think the label would be better than forcing a family to accept yet again failed dreams they may have had for their child.

A Story for Ronnie - The Deaf Hulk

Such a Waste of Time

Why did Ronnie's school team feel like a hearing test was necessary? Any one of the team members could have stood behind him, yelled at the top of their lungs for 5 minutes, and he would never have turned around or heard a thing. Yet, because it was time for his triennial evaluation, and hearing tests are part of that, he had to sit through an audiological exam at the school.

The note that came home that afternoon said that there were 'no surprises.' Really? Did you think he had been faking all this time, or that somehow overnight a miracle had occurred and his hearing was restored?

What kind of message are we sending to students like Ronnie we they are forced to sit through tests like that when the outcome is obvious? I'm betting that he is getting the message that still something is wrong with him, less than ideal, less than what the school would hope. Why else would they continue to test if not out of a hope that somehow he gets 'better'?

And how much taxpayer money is being wasted on fruitless pursuits such as this?

You can probably tell things are not going well with his current school placement. Thankfully he will return to his home school next year, and I firmly believe things will be better.

Any Direction You Choose

Congratulations!
Today is your day.
You’re off to Great Places!
You’re off and away!

You have brains in your head.
You have feet in your shoes.
You can steer yourself
any direction you choose.

Dr. Seus

I’m so happy that Ronnie has access to team wheelchair sports through Sportable. He is a very athletic person, and always seems so excited to play basketball, lacrosse, track and field, etc. He never had that opportunity before joining our family, and he certainly doesn’t get it at school. But even more than the athletic opportunity, I like that he is meeting people who use wheelchairs and don’t let that stand in the way of living life to its fullest.

Last week at lacrosse, the coach was talking about one of the players to Ronnie. The player is a man in his late 20’s, and it was obvious that sports are his passion. But the coach was also relating how this gentleman was late arriving because he was repairing his roof. Ronnie looked a little surprised at that, and the coach just said, “well, he’s a family man and he has to take care of his family.” I saw a light bulb go off in Ronnie’s brain.

Ronnie has met people who drive and unload their own chairs, people who have children and who care for those children, people who travel to exotic places, people who have many different types of jobs, and people who can be every bit as competitive on the playing field as a person without a chair.

Ronnie is on that threshold on which all people with disabilities stand, even if only for a moment. Ronnie can choose to have others help him the rest of his life, or he can decide to take care of himself and do whatever it takes to reach that goal. He is more than capable, but I think he often needs convincing. Somewhere along the way in his tumultuous life, he learned to be a taker and not a giver. I believe it is my parenting job to change that, and the folks at Sportable are helping me more than they realize!

Coming Home

Finally, a decision was made yesterday. Ronnie will be coming back to our neighborhood school for the next school year.



At the end of last year during Ronnie's IEP meeting, I was sold a bill of goods. I was told that the new zone program for hearing impaired students would provide Ronnie more of a Deaf culture experience. That didn't come to be....and Ronnie missed his friends at his old school. I won't list all the issues and reasons why I wanted him to transition back, but I will say that he was very happy at yesterday's meeting when the decision was made.

He will now attend the school from which his two brothers graduated and the school where his sister still attends. The staff at the school is very excited to have him back, and he has been texting his friends to tell them the good news.

Sometimes what looks like a good approach actually isn't. However, when one looks at the 'whole' student, not just the disability, the right approach is clear.

Standing Firm for What He Wants

I'd gotten spoiled the last few years. All my IEP meetings were at the same school with the same school staff, and everyone understood 'the rules.' But this year, Ronnie moved to a different school and the play book was tossed out the window.

Today I sat in an IEP meeting with an entirely new group of school staff. Obviously missing was someone from Central Office, and that would prove to be a problem - more on that later.

I received the draft copy of Ronnie's IEP late last Friday afternoon, and the meeting was scheduled for 1pm Monday. That is not enough time for me to digest what the school was offering. Several times, the teacher asked if I had time to review the proposed document, and every time the answer was no - I have a life and other children. I need time....

But the meeting was held, and from the very start, it took a turn for the worse. Remember those triennial scores from the tests not normed for a deaf students - those scores I had them put a disclaimer in Ronnie's file about - well lo and behold, those very same scores showed up in the Present Level of Performance section of the IEP. I suggested a rewrite and the rewrite was accepted. But why would the team think the scores would be acceptable in an IEP when I vehemently opposed them in the triennial report???

From there we moved to the goals and objectives. Ronnie's teacher, sweet and well-meaning as she may be, just doesn't know how to write a measurable objective. So all my suggested rewrites for those were also accepted. Along the way both the chair of special ed for the school and the teacher kept saying I needed to be a teacher. I reminded them that my expertise came as a result of many years and too many IEPs to count. Should have stood as a warning, don't you think???

Finally, we were at the placement discussion. Everyone except Ronnie and I assumed Ronnie would stay at his current school next year. I started on my speech about why that was not what either of us wanted. The school team's response started at shocked and then moved to being defensive and finally to telling me they couldn't make a change like that. Someone from Central Office would have to talk to me about that.

Well, if someone from Central Office had been at the meeting like they were supposed to be we could have settled the issue and perhaps had a signed IEP. As it stands now, there is no signed IEP and I don't know when there will be one.

Perhaps the saddest moment for the teacher and staff came when I suggested the interpreter ask Ronnie why he wanted to go back to his previous school. I didn't want them to think Ronnie was answering a certain way just to please me, and that's why I wanted the question to come from someone else. Ronnie said all his friends were at his previous school, that he hadn't made any friends at the current school, and he just wanted to go back. When further quizzed as to whether the staff at the current school could do anything to change his mind, he politely signed, 'no.'

That was a good example of self-advocacy in my opinion, but it was sad to see his current teacher get teary-eyed at the response. Ronnie is a very easy person to fall in love with, and I'm sure his teacher has. But both Ronnie and I know that he has to make decisions that are in his best interest. And today he did that.

I am very proud of him...

Here We Go Again

When Ashley was in elementary and middle school, I constantly had to prove her abilities. She was viewed as a child with many deficits rather than a child who learned differently. Because she didn't fit the mold of a typical student, she was labeled as significantly delayed, when actually the teachers and staff had just refused to acknowledge that her sensory disabilities meant she approached the world in a different way. Fortunately by the time she moved to high school, her teacher 'got it', and Ashley has and continues to flourish.

But now I am facing the same battles with Ronnie's new school and teachers.

As parents of children who receive special education services you know that once every three years a child has to be re-evaluated. It's called a triennial, and it has always baffled me as to why we must go through all the testing over and over when the disabilities remain the same. Ronnie is still just as deaf as he was three years ago. He still communicates in his mother tongue, ASL. And he has not miraculously tossed aside his wheelchair and begun to walk.

But that doesn't matter. The rules say the triennial must be done and done it is. And that's where my problems with Ronnie's current educational staff emerge.

One component that was administered was a speech and language evaluation. I get the language part if, and that's a big if, the evaluation is administered in ASL by a Deaf person. It wasn't. But the school feels it is fine because they used an interpreter for Ronnie. I won't go into all the reasons why that is not a good approach, because even more distressing than that is the fact that they also administered the speech component. Ronnie doesn't speak - at all. Like a lot of Deaf people, he makes sounds, and in fact can be quite loud sometimes, but he is not speaking words. Again, ASL is his mother tongue.

But again, the school thinks all this is ok because they believe they have also measured his ASL skills - with a speech and language evaluation. Here are two examples why that was a disaster also:

Ronnie was shown a picture of tweezers and asked to sign what they were. He signed 'pickup - hair - ouch'. The speech therapist marked that as incorrect since he didn't know the word 'tweezer'. But what Ronnie signed is the sign for tweezer. If you want to see what I mean, go to the website www.aslpro.com, select main dictionary, and select the word tweezer.

The speech therapist also noted that a lot of Ronnie's signs were incorrect because they showed the action of the word, not the actual word. Again, go to aslpro.com and look up words such as wheelchair and basketball. Many, many ASL signs reflect the action of a noun, but the speech therapist didn't know that. I'm still baffled why the interpreter didn't enlighten the therapist.

So the result is that their evaluation puts Ronnie's language at the 3 year old level. And that is nothing short of preposterous.


Then to make things worse, the classroom teacher used the Kaufmann Test of Educational Achievement to measure Ronnie's educational level. Only there's one little problem. The Kaufmann has never been normed for students who are profoundly Deaf. So I head to the triennial meeting on Tuesday to again argue the point that unless a test has been normed for the student you are evaluating, all the results are invalid.

It reminds me of the time Ashley's teacher came away from Ashley's triennial with the statement, "Ashley is a visual and auditory learner.' ASHLEY IS DEAFBLIND!!!

Tuesday's meeting is probably going to be a little contentious because once again I am going to have to argue why standardized testing does not fit all students, especially students with sensory disabilities. I really thought we were past all that in my school district, but apparently not.

Pursuing Dreams

This video could word for word be about my son Ronnie. Well, if you substitute wheelchairs for legs! I have heard the same words from Ronnie and his wheelchair basketball teammates. While I believe schools for the Deaf can provide a good education and experience, I also believe that a full life will not be lived in the Deaf community. The Deaf community indeed has its role in the life of anyone who is Deaf, but the rest of the world doesn't stop and doesn't go away. True success, in my opinion, comes in being able to navigate both worlds.

Spokes Rule!

We traveled to Smithfield, North Carolina this past weekend for Ronnie's wheelchair basketball tournament. The weather was beautiful. The traffic was light. And the Sportable Spokes (Ronnie's team) won two out of their three games!!








Way to go, Spokes!!!

Wheelz

This has got to be one of the coolest kids I have ever seen! Funny thing, I could easily superimpose Ronnie's face over this kid's face because I can see Ronnie begin driven in exactly the same way. I'm just hoping Ronnie doesn't visit my blog today because I am not ready for a heart attack!

Knowing The Difference

Ronnie loves the Three Stooges. He loves anything where people fall down, trip, get hit, stumble, etc. He will burst out laughing whenever he sees that on TV or in person.

One of our favorite interpreters told me that such is common among people who are Deaf. She said that almost every Deaf person she has ever known finds physical acts such as those very funny.

I get it but there are some times that Ronnie's laughing seems really inappropriate.

Falls are not always meant to illicit laughs. Stumbles are often accidents and the person doing the stumbling doesn't like being laughed at. A person fainting usually finds nothing funny about their situation. But it seems Ronnie can't tell the difference sometimes - or at least he isn't distinguishing when it is appropriate to laugh and when it's not.

I have often corrected him when his laughter isn't appropriate, but he seems hurt when I do that. (I don't do it in front of anyone.) I'm really not sure he is getting the message.

How do I help him distingush a pratfall from an embarrassing or hurtful fall? Any suggestions?

Special Exposure Wednesday

Ronnie is enjoying his birthday breakfast from McDonalds! Happy 17th, son!

Spider Man

Today begins the first day of my two week vacation! TWO WEEKS! The last time I had two weeks off from work was for maternity leave for my oldest son, Chip. Chip is now 21 years old!

My posting schedule may be a little off these two weeks, but I am going to try to document these historic two weeks through pictures. And, I have a major announcement coming later this week!

First - the picture. Ronnie and some members of his wheelchair basketball team went rock climbing this past Saturday. It was so exciting to see the boys and one girl pull themselves up with arm strength only. They did this last year, but this year they were much faster! And then secondly - I will provide a clue about my announcement at the end of each post. If you think you know what the announcement is, email me. But, your guesses have to be very specific!



TODAY'S CLUE - I first met Ashley in December...Jessica and Corey joined our family in December....and I first heard about Ronnie in December.

Do It Right....Or Else

Just when I thought I only had one school bus battle to fight, another rears its ugly head.

Now what, you ask? Well, for the last three days of last week, Ronnie had what we thought was a substitute bus driver and aide. I did find out late Friday afternoon that they are not substitutes - they are the new staff for his bus.

Apparently, the bus driver is 'new' as Central Office told me. And that newness is certainly apparent since she can't drive the friggin' bus!!

We have a nice long, wide paved driveway. Every bus for the last 14 years has been able to stop at the end of the driveway in such a way that the wheelchair lift can be set down with no problems. Ms. new bus driver, however, can't seem to do that. Last Wednesday, Thursday and Friday, she either overshot or undershot the driveway. That wouldn't be too terrible if we didn't have deep ditches on either side of the driveway!!

All three days, the wheelchair lift was lowered into the ditch and the bus aide just stood by and watched as Ronnie struggled to get to level ground in his chair. Fortunately Chip was out of college and met Ronnie's bus and was able to help him.

I called the main transportation office and they said they "would talk to her." Wonder how things will go today? I'm going to leave work early just so I can be home when his bus arrives. If the driver doesn't make it safe for him to exit the bus, I'm going to be very, very angry and make a scene...

Stay posted for an update tomorrow!