The Only Limitation Is Imagination

This article appeared in "Sports Are For Everyone" Newsletter late last year.

The Only Limitation is the Imagination

-Photography by Robert Wright-

There has been a long standing goal for Robert to find a vocational interest that he would be able to pursue in adulthood. He attended a non credit course at HVCC "So You Want To Work with Animals" but many of those occupations required much physical dexterity. It was a teacher with BOCES that identified Robert's interest in photography.

After a trip to the library, Robert was perusing a book of multiple occupations. He expressed interest in the pages that described photography of animals. During a session of his teacher taking pictures with the classroom camera, Robert used his tech scan device to say "I want a turn." His teacher then allowed Robert, with much assistance, to press the button to take a picture. His assistive technology teacher found an adapted camera online that Robert has been using.

Robert entered EJ Hanley’s high school class in September 2009. He became a member of the school’s yearbook committee that fall and was able to take pictures by having his teaching assistant hold the camera. By December, Robert's photography teacher noted that the assistant holding the camera for him really limited his creative independence. Once Robert acquired a camera mounting arm which attaches to his chair, he was then able to compose his pictures as he envisions them.Through books and media (including a video biography of Ansel Adams) Robert learned that photographers have assistants who do much of the physical work of photography. It is the job of the photographer to visualize the image and to direct the assistants.

With Robert's new found independence, he has been able to broaden his creative horizons to include diverse subject matter. Currently Robert is studying more about light and composition.

The grounds of the Double M Ranch while on the SAFE Halloween hay ride.

Teen "Speaks" Through Camera

I would like to introduce you to an AMAZING teen, who dispite his brain abnormality, has defeated all of the odds. Who has accomplished more than any of his doctors ever thought that he would. And who has found a way to communicate, with others without words....

Mohonasen High School student Robert Wright, 18, smiles as teaching assistant Yvone Pierce lines up his digital camera during a presentation of his latest photography.

Following is the article that appeared in the "Daily Gazette" Schenectady, NY, on Tuesday, June 9, 2009.

Teen "speaks' through camera

Handicapped student has outlet for his creativity.

ROTTERDAM — Robert Wright nods his head to his left shoulder and the flash of his digital camera briefly illuminates the Mohonasen High School library.

A smile forms on his face, as teaching assistant Yvone Pierce readjusts the camera fastened to his wheelchair. She asks if the positioning is all right and his light blue eyes roll upward, indicating the affirmative.

“When he’s ready to take a picture, he’ll snap it,” Pierce explains.

He nods his head again, depressing a small button affixed to his headrest. This time, he takes a picture of a classmate, who returns his beaming smile.

Suddenly, Robert is communicating with the world around him. Only he’s doing it without a single spoken word.

“This is a huge step in his ability to communicate,” said Sue Braiman, a business education teacher at Mohonasen, during an exhibition of Robert’s photography Monday.

The 18-year-old was born with holoprosencephaly, a birth defect that prevents the forebrain from dividing into hemispheres. As a result, Robert cannot talk or walk, and has extremely limited use of his hands.

Ordinarily, his only modes of communication are by using a sequence of eye movements or an electronic device that allows him to select from a sequence of statements. Using the camera provides him with a whole new realm of expression that was previously unavailable to him.

Robert’s interest in photography started in 2007 when a BOCES teacher was asking him about his interests. Robert indicated that he was interested in taking pictures of animals.

Later, Robert indicated he wanted to try taking pictures with a camera the teacher was using in the class. Initially, he was only able to take shots by having someone hold the camera for him and depress the shutter button.

Then in September, Robert began studying under photography teacher Rick Crowe, who suggested fastening the camera to an arm mounted on his wheelchair. That along with the shutter button on his headrest gave Robert more freedom with his photography.

But more importantly, it’s allowing Robert to engage his surroundings like he’s never been able to do before. Pat Wright, his mother, said Robert’s newfound love of photography has given him new purpose as he copes with his disability.

Photography also gives Robert an outlet, which is something his older sister, Mary —who also has holoprosencephaly —never developed. Wright said Mary, who is 10 years older than Robert, isn’t nearly as engaging with her surroundings.

“It does give him more independence,” she said of Robert’s photography. “I feel very proud that he’s identified an interest.”

Robert uses Mohonasen as his canvas and his teachers are amazed by his artistic instincts. His pictures range from the simple to the complex; from some that show depth and shadowing to others that profile the people he sees at school.

E.J. Hanley, one of Robert’s special education teachers, picks up one of his prints featuring a Mohonasen teacher talking. She explains how Robert focused instead on a poster behind the woman, who is ancillary to the shot he was striving to capture.

“He’s young adult with a tremendous brain and a good photographic eye,” she said.

Now the Wrights and Robert’s teachers at Mohonasen are hoping to find the teen a better camera to use. And for the time being, they’ll continue to help him explore his newfound hobby.

“We’re hoping there’s a lot more to be seen of his artistic ability,” Braiman said.

Do You Believe Me Now??

This link was passed along via the Bilateral Anophthalmia Yahoo Group, which I'm a member of. It is an incredible and touching video. Timmy is visually and hearing impaired. We also have other issue that we must deal with on a daily basis. This video only covers a hearing impaired individual. And their ability to try to overcome their disability. Enjoy!

http://www.youtube.com/watch?v=_AmMCDLgiA0

Happy Father's Day!

Happy Father's Day to all the Dads, stepDads, GrandDads, Dad-In-Laws and to the "special someone" who steps forward to be a Dad to a child who needs one!

"Any man can be a Father, but it takes someone special to be a Dad!"
-Author Unknown-

Thank You Dad for always being there.
Showing me just how much you care.
Through the sleepless nights,
when I cannot rest,
But am overcome with giggles,
Which puts your patience to the test.
Throught my illnesses, doctor visits and surgeries,
I can always count on you to be by my side.
The endless hours of therapies,
Feeding me,
Bathing me,
Cuddling and Rocking with me,
Singing silly songs,
And pretneding to be a Big Grizzly Bear,
These simpliest of things show me just how much you care

Teaching me that dispite my disability
it is still okay to laugh.
With your gentle hands you guide me,
Helping me to learn and grow,
Like a caterpillar leaving its caccoon,
My grwoth and maturing is very slow,
But with your patience and understanding,
I'll get there, this I know.

If I had a way to tell you,
These words I would say to you,
Dad you're my bestest friend.
And I LOVE You!

Dad of the Year Award!

I can't say that I know too many Dads who would sit this patiently for over an hour, while their 3 year old daughter practiced her Cosmetology skills on them....
How cute and how sweet is this???

What Makes a Dad
-Aurthor Unknown-

God took the strength of a mountain,
The majesty of a tree,
The warmth of a summer sun,
The calm of a quiet sea,
The generous soul of nature,
The comforting arm of night,
The wisdom of the ages,
The power of the eagle's flight,
The joy of a morning in spring,
The faith of a mustard seed,
The patience of eternity,
The depth of a family need,
Then God combined these qualities,
When there was nothing more to add,
He knew His masterpiece was complete,
And so, He called it ... Dad!

Timmy's IEP

The other day I FINALLY received the final copy of Timmy's IEP. We had the IEP meeting on April 1st, to set goals for Timmy's kindergarten school year, which starts July 21st. There was some info that had to be obtained before the final copy could be prepared. We had to get the school system a copy of Timmy's most recent audiological report. We had an appointment on April 7th with Timmy's audiologist (Pat Rouche) at UNC in Chapel Hill, N.C., at which time we discussed the use of a FM Trainer System for Timmy during instructional learning at school. The Mrs. Rouche agreed that being we had seen more spoken words from Timmy when he was wearing his hearing aid that a FM Trainer COULD be tried to see what if any results Timmy would gain from the use of the FM Trainer System. The Mrs. Rouche also suggested that we stop having Timmy to wear his hearing aid, because he tested "normal" hearing in his left ear and by him continuing to wear the hearing aid, we would be over amphifying his hearing, which in turn could cause damage to his ear.

Well, when the school's audiologist contacted Mrs. Rouche, she acted as though we had NEVER had the discussion about the FM Trainer System. She also stated to the school's audiologist that she felt that Timmy would not gain anything with the use of a FM Trainer System.

Why is it as parents, we have to put up a FIGHT to get services for our children? Why is it that teachers, audiologists, doctors, therapists etc... question our knowledge about what we KNOW to be in our child's best interest and WILL work best for our child?

After over 30 minutes of TRYING to get my point of view across as to WHY I feel that a FM Trainer WILL benefit Timmy, I'm happy to say, that we all were able to come to an agreement. A trial period will take place 4 weeks after school starts. The first 4 weeks, is to give Timmy time to get use to the new school setting and for the teacher to get to know Timmy a bit. When the trial starts data will be collected. The first part of the trial will be without the use of the FM Trainer System. The second part of the trial will be with the FM Trainer System. Each trial period will last for 4 weeks. At which time, once the trial period is over, we all will sit down and go over the results. If this trial doesn't work, we will consult with Mrs. Rouoche once again to see if she has any suggestions.

I'm just afraid that being Timmy will be in a special needs class with children of all ages (K-5th grade) and varying degrees of disabilities, that Timmy will not be always be able to hear the teacher, especially when she is teaching the class as a group. I have met with and spoken with Timmy's kindergarten teacher. She estimates that she will have a class size of at least 10 students this year. So there is absolutely no way that she will always be able to be facing Timmy and speaking to him within 4 feet. And there is no way she will be able to always work with him one-on-one. I REFUSE to let Timmy be a stastic, placed in a corner and left there to entertain himself, just because he has a severe learning disability! Timmy IS and HAS Potential! Given the opportunity, correct teaching strategies and materials, Timmy CAN and WILL go far!

This poem fits this situation perfectly.... Oh the stress, headache and fight needed to get the IEP FINALLY right!


The IEP

I do not like these IEPs
I do not like them, Jeeze Louise
We test, we check
We plan, we meet
But nothing ever seems complete.
Would you, could you
Like the form?
I do not like the form I see
Not page 1, not 2, not 3
Another change
A brand new box
I think we all
Have lost our rocks.
Could you all meet here or there?
We could not all meet here or there.
We cannot all fit anywhere.
Not in a room
Not in the hall
There seems to be no space at all.
Would you, could you meet again?
I cannot meet again next week
No lunch no prep
Please hear me speak.
No, not at dusk. No, not at dawn
At 4 pm I should be gone.
Could you hear while all speak out?
Would you write the words they spout?
I could not hear, I would not write
This does not need to be a fight.
Sign here, date there,
Mark this, check that
Beware the students ad-vo-cat(e).
You do not like them
So you say
Try again! Try again!
And you may.
If you will let me be,
I will try again
You will see.
Say!
I almost like these IEPs
I think I'll write 6003.
And I will practice day and night
Until they say
"You got it right!"

We're Home!

We arrived home today at about 2:00PM. Unfortunately, the decannulation was not a success. We are disappointed obout this, which is to be expected. But this doesn't change how much we love Timmy, the quality of his care and the activities that we do with Timmy. Some of the activities will just have to be adapted, so that he can participate.

When Dr. Noah (fellow that works with Dr. Z) did the scope today, He reported that the area where the lasering had been done looked great, but he found that Timmy STILL has a floppy airway just above his vocal cords and that his tongue almost completely obstructs his airway. We got this same diagnoses with Timmy's first ENT (Dr. Hulka) a couple of years ago. This made the 3(?) scope that Dr. Z or one of his fellows have done. We specificly asked previously IF they had seen a floppy airway or a tongue obstruction, and we were told NO!

When we arrived and discovered that the game plan had changed, I somehow knew that Timmy wasn't going to do well. Dad spent the majority of the week with the coordinator to set everything up for this scheduled procedure. He was told that Timmy would be having the scope preformed in one of the Pulmonology Treatment Rooms under a mild sedation. Instead, Timmy was taken to the OR, where he was give general anesthesia and completely snowed under. When they woke Timmy up, I know for sure that Timmy panicked! This was most likely the cause of the tongue obstruction. I feel that the tongue obstruction is strictly positional. As for the airway issue, yes it is possible that is still there and "could" still pose a problem. Timmy has had a recent sleep study. And again we asked if he had any obstructions that wre noted, we were told NO!

When Timmy removes his trach while at home, he DOES breathe through his mouth and nose and he shows absolutely no signs of distress. This is another reason WHY I feel that the tongue obstructing the airway is positional. Timmy has had MANY scopes and the tongue obstruction has only been seen twice. Hmmm, one would think that IF the tongue was really an issue, wouldn't it have been seen more frequently with Timmy had the scopes???

The airway team (ENT's, Pulmonologist, Peds. Respiratory and whoever else) will meet again on Monday to discuss Timmy's case, to see "what if anything" they are willing to do to solve the airway and tongue obstruction issues. It was my impression, while speaking with Dr. Noah today, being that Timmy has so many other medical issues, the airway team will most likely decide NOT to do anything further.

IF by some chance the airway team decides to proceed, we still have two options, which may be open to help resolve the airway issues.
1. We could let Dr. Z and the rest of the team use a rib graph to build up Timmy's airway. There is also a procedure that would be needed to bring the tongue more forward in the mouth.
2. We can contact the ENT team at NIH (National Institute of Health) they have devised this balloon type thingy that they have been doing trials with to help enlarge and strengthen the airway. I don't have much info on this. It was only mentioned to us briefly a while back. Timmy would have to be evaluated at NIH, before they would be able to make a determination if he is even a canadate for the procedure.

Dad is going tomorrow to buy the kids a pool. Yes, Timmy WILL still get to go swimming. I came up with the brightest idea so that this could happen. (Okay, I'll admit, I'm probably not the first person to ever think of this.) Dad will be purchasing a 12x30 pool. With the pool filled to its minimal water level, Timmy will fit perfectly while safely secured into his bath seat. There is also the option of a float, but this puts Timmy above the water and not in it. This makes water play not as fun, in my opinion. Especially for a boy who ""Thinks" he is a duck or a frog!

"D" Day is here!

"D" is for decannulation. The airway team, which consists of Timmy's ENT and his Pulmonologist (I'm not sure who else was involved.) had a meeting on Monday. They reviewed the video that was taken during the lasering of Timmy's airway, which showed his upper and lower airway. Everyone felt that being everything looks remarkable that it would be ok to proceed with decannulation, rather than waiting for another 1-2 weeks. Timmy has to be a UNC hospital by 7:30am on Friday. Someone from the Pulmonology team will use a scope to take a quick looksie at Timmy's airway, just to make sure tha there isn't way swelling, tha it is healing properly and to make sure nothing else is going on, which would delay decannulation. At the time of the scoping, the Doc will pull out Timmy's trach. They will place a sterile bandage over the stoma opening. Timmy will have to stay 2 days in the hospital for observation. The "team" feels that within the 2 days we will all know for sure if Timmy will pass the tests or fail. We were told that typically "IF" a child is not going to tolerate having their trach out, it will be apparent within a few hours. And if there is going to be an issue to arise, it most likely will appear at nap time or when the child goes to sleep for the night. We were told that "IF" a child tolerates their trach being out for 2 days, they typically will continue to do well.



I'm feeling so many emotions right now. I'm excited, nervous, scared, worried, anxious, excited! I want this to happen soooo bad. BUT do not want to have to face the let down "IF" for some reason Timmy should not tolerate the trach being out. My biggest fear is that most likely Timmy will fail at night while sleeping, because he is such a shallow breather.



Keep checking back, I'll post updates on how Timmy is doing.

Please Can I Have A Pet???

Mama's little boy is growing up so fast! Today was Timmy's last day of Pre-K. I can't believe that an entire year of school is already over! They had Fun Day at school today. Timmy's favorite activities were water play and petting a Rat snake and a Corn snake. He just thought that it was so funny to feel the snakes wiggling in his hands and he found it even more funny when the snakes wrapped themselves around his hand and arms. I'm sure if he could have asked, he definately would have asked for a pet snake! Mrs. Lowman, Timmy's teacher took a few pictures. I'm hoping that we are able to get together, so that I can download her disc to our computer. So that I can share some pictures.

Last week we volunteered at Timmy's school. I had all of Timmy's classmates help me to create a momento project for Timmy that he would be able to enjoy himself. We used a white pillow case, assorted colors of fabric paints and puffy fabric paint. I had each child place one of their hands into their favorite color of fabric paint, then place their hand onto the pillow case. This left a slightly raised hand print of each child. I then took a permanent marker and wrote the child's name under their hand print. Once all of the hand prints had completely dried, I used puffy fabric paint to outline each hand print. By outlining each hand print, it makes it easier for Timmy to be able to feel each hand print. Being that Timmy can't see pictures, I felt that him having a momento in which he could feel would make for nice memories for him. I'll try to post a picture of the completed project, just so that you can see how nice it looks.

Physical Therapy

Doesn't Timmy look like he is working very hard? This picture was taken during one of last weeks physical therapy sessions. I wish it was a bit clearer, but all I had on hand to snap this picture was my cell phone camera. As you can see, Timmy is standing nice and tall. He is even holding onto the walker with BOTH hands. Mrs. K is only providing minimal stability at Timmy's waist to help him to find himself in space, in order for Timmy to have better balance. We are so very proud of Timmy! Mrs. K. has only been using the walker in therapy with Timmy for about a month. This is one of a very few times that Timmy has been willing to fully participate and tolerate trying to use the walker. I guess after a long hard day at school, who would want to come home and work so hard also...?

And we wait....

Timmy's surgery went very well. Timmy isn't in any pain. There was only minimal scarring, his nasal passages are still open and his airway is of average size.

But decannulation has been put off for right now. By putting off decannulation, we will accomplish two things. 1. Timmy will have time to heal. 2. Timmy will not have to go back to the OR to be scoped to check his airway. Dr. Zdansky is going to release Timmy into the care of Peds Pulmonology. Peds. Pulmonology is able to admit Timmy to the regular Peds. Unit and do a scope to check the airway in one of their treatment rooms. The only thing that Timmy will need is a mild sedative. There won't be the stress and risk associated with anesthesia or the many sticks that most of the time are necessary to obtain IV access. IF the all of the doctors are willing to work together, this decision should only set back decannulation by a week or two. There will be a meeting of ENT and Pulmonology on Monday. At this time the doctors will discuss Timmy's case and agree on a date for decannulation. By mid week, we will start calling if we haven't heard anything to push along the process, so that we can get a date. We really would love to have Timmy's trach out by the time he starts school in July.

But like the saying goes; Patience is a Virtue! Which I don't have much of....Patience.