Tuesday, July 12, 2016

We Need to Foster the Growth of Meaningful and Effective DeafBlind Education in the United States

(Image description: A screenshot of National Association of the Deaf's Instagram account, @NAD1880, displaying a photo of a 4 year old white-haired, caucasian DeafBlind boy hugging his mom's hand with his head. Only his head, left hand which is holding a wooden toy, and his mom's hands are visible.)
Orion lovingly hugs his mom's hand.
(Image description: A screenshot of National Association of the Deaf's Instagram account, @NAD1880, displaying a photo of a 4 year old white-haired, caucasian DeafBlind boy hugging his mom's hand with his head. Only his head, left hand which is holding a wooden toy, and his mom's hands are visible.)

If you’ve met one child who is DeafBlind, you’ve met just one DeafBlind child.  The number of DeafBlind kids in the United States is so small, since it’s a low-incidence disability. In 2014, there were 9,133 children from birth to 21 identified as DeafBlind, https://nationaldb.org/childcount.  My son Orion is one of the 1,709 DeafBlind children from birth to 5 years old counted in 2014.  DeafBlind children are also diverse due to additional disabilities, family background, communication needs and growth, levels of deafness, how they use their vision, if any, and how they move through their environment.  Many were born DeafBlind and many became DeafBlind before or after language acquisition and concept development, or later in their K-12 educational years.  Most importantly, DeafBlind kids have their own personalities and favorite things to do!  Check out my blog, “A Mom’s Musings”, at http://hexwit.blogspot.com for stories and videos of nearly 6 year old Orion, our family, and links to online resources and information that I found extremely helpful. You can also find Orion and other inspiring children on social media with hashtag searches for #DeafBlindKids, #DeafBlind.

There are DeafBlind Projects serving each state, providing technical assistance in the classrooms and in family homes, workshops, training, networking with other families and resources.  Find your state’s DeafBlind project as well as pretty much anything else “DeafBlind" by visiting the National Center on DeafBlindness’ (NCDB) website,  https://nationaldb.org  Finding my state’s DeafBlind project was one of the first things I did… before Orion was born!  On my blog for new parents is a list of items, including early intervention, parent-to-parent connections, communication, playing, etc., to consider for families of DeafBlind children, http://hexwit.blogspot.com/p/for-fellow-parents_19.html 

Many DeafBlind children benefit from #Interveners who are trained in intervention, communication and educational strategies for children with deafblindness.  Interveners can be found in schools, community and home but they aren’t everywhere just yet.  This is just one small part of where the Cogswell-Macy Act will make a difference in the lives of DeafBlind children, by properly identifying and counting DeafBlind children, recognizing and facilitating the growth of qualified personnel, whether they are interveners or teachers.  Photo contributions of many families with DeafBlind children made it possible for me to put together a video in support of Title III, the DeafBlind part, of the Cogswell-Macy Act, https://www.youtube.com/watch?v=wVS3H9Z2FHM 

The biggest concern is that the contents of the Cogswell-Macy Act needs to happen “yesterday”, our future generation of DeafBlind children are being born, celebrating their first or sixth birthdays soon with their parents advocating for what is appropriate for their precious family member.  

With the leadership of the National Center on DeafBlindness, funded by the Office of Special Education Programs (OSEP), leaders, educators, interveners and family members of DeafBlind children and adults worked together on specialized module-creating teams over several years developing Open Hands, Open Access (OHOA) DeafBlind Intervener Modules.  You can visit the website at   http://moodle.nationaldb.org. The are currently 18 OHOA modules available with the final group of modules being field-tested right now and they will be revealed in the not-too-distant future.

You don’t need sight nor sound to inspire other people, that’s the gift our children are giving us and the world.  We need to give back to our DeafBlind children by the way of appropriate and meaningful education- we need to pass the Cogswell-Macy Act which has been introduced in the House as #HR3535 but not yet at all in the Senate. To pass an act of Congress is no small feat! 

In the midst of advocating you still can make a difference by supporting the growth of interveners and Teachers of DeafBlind (TDB).  Officially, TDBs are still very new that, at least in Texas where my family lives, there isn’t state certification offered yet like there are for Deaf education, blind and special education, and so on.  However, the passion for teaching DeafBlind children have been around for years!  Yes, to families there doesn’t seem like there are enough of them. We can help meet this need by the way of scholarships, planning on training, convincing our local college or university to offer certificates or degrees in deafblindness as interveners or teachers!  Or even start working in this rewarding field ourselves!

I want to thank each single person, wherever on this planet they are, who stumbled into or sought out the field of educating DeafBlind infants, children and youth. Thank You from the depths of my heart!

Saturday, June 11, 2016

Laugh Everyday

It may be corny but each one of us needs to laugh every day.  When you do, you become happy, you are experiencing small, individual moments of joy.  Even when you sincerely try a fake laugh for someone else, it's likely to be contagious anyway and you all fall into genuine laughter and joy.  When you accomplish laughter everyday, you have successfully incorporated laughter in your attitude and lifestyle.  It is even better when it is your family's lifestyle, too.

In Mitch Albom's book, "Tuesdays With Morrie", he talked about balance, that one cannot experience true joy without experiencing sorrow.  There's a balance where you swing from side to side, from joy to sorrow and vice versa.  It is not good to stay exclusively on one side of this balance, whether it is happiness or sadness.  I can come across as an eternal optimist in this blog and trust me, I have fallen flat on my face before.  What we all need to do is appreciate being down and then put on our big kid underwear and get up again.  Get up and make the best of where you are with what you have.

Anyway back to laughter...

If you can't remember if your child has laughed today, do something! Tickle him or her, swing her, go for a drive and roll down the windows, squeeze his cheeks and touch his nose (that something Orion does to himself, too), blow raspberries, etc.  Those were comments from each person in our family when I asked them what they do that makes Orion laugh.

Here's a video of Orion giggles, squeals and laughter to enjoy!

"Really Happy Reel"

Orion giggles, squeals, and laughs his way through this 2 minute video with special appearances by his big brother and sister, deaf family dog, Dad and a DeafBlind Intervener. (Minimal description is at the YouTube location, will elaborate soon when time is available.)

Sunday, April 24, 2016

Playing Through Touch (VIDEO)

This video is about playing through touch and using anticipation, with Mom's fingers crawling up his chest to tickle his neck. This gives Orion positive experiences with tickle and anticipation games. (Text is in the video description at its original YouTube location.)

Sighted children are able to see the tickle monster or The Hand diving in to tickle-bomb them.  If you used the same sneaky technique on your DeafBlind child, you're going to scare them.  Thomas and I wanted Orion to experience the same thing but in a DeafBlind way- what's similar in both situations is anticipation in a fun way.  Orion has no sight or sound* so he's learning mainly through the senses he does have, most commonly known as touch, taste, smell.  (There are more senses beyond the 5 senses, too, by the way!) In order for Orion to know we're about to come in, we go ahead and gently touch him on his abdomen, crawl up his chest in a slow-to-quick motion (slow most of the time) to where we ultimately tickle him.

We have accidentally frightened him, even when we mean well.  I recall one time I was so excited, I mean, so emotionally overtaken when he accomplished something, I tickled him right away in celebration. He was startled. I hoped I did not scare him to the point he avoids doing that skill again.  (He did it again anyway and I knew better to be gentle.)

*Orion has bilateral cochlear implants. He currently wears just the left processor for brief periods of time in school, especially during music class if he leaves it on.

Friday, April 1, 2016

Orion's Beautiful Boy Blues (Eyes)

Realistic blue eyes by Randy
Image description: A close-up photo of a DeafBlind 5 year-old boy with fair skin and white hair seemingly gazes off into the distance while resting the right side of his face onto his favorite plush red blanket.
The time we spent "trying on" the new scleral shells paid off on Monday, it told us that the one in his right eye was too small. Orion had both "eyes" in the whole time I was out strolling in the area but by the time I got back into the waiting room, the right eye was GONE! No matter, Randy knew this would happen as it's happened for years with his pediatric patients.

The plan: Randy is going to make both shells bigger, the left eye a little bigger, and the right one even bigger and mail them to me this week. Sure enough, they arrived Thursday night while I was out coaching at a track meet! That was only because I confirmed I was comfortable putting them in Orion's eyes. I'm only guessing that if I weren't comfortable, he would just have us stay until the end of the day when he is finished with the eyes.
Y'all asked fascinating questions! No, no, they weren't rude and I'm happy to answer them.


Yes, Orion has his own eyes and they're really small, it's called microphthalmia. I tell kids they're the size of peanut M&Ms. Just like peanut M&Ms are different sizes and shapes, so are Orion's eyes because they're not identical sizes either. Ironically his smaller right eye has some light perception while his bigger left eye is totally blind.

Normal eyes still grow a little after birth but I am not sure about those who have microphthalmia. According to a Q & A the American Academy of Ophthalmology website: "The eyes undergo considerable growth especially during the first two years of life, with a second growth spurt occurring around puberty. The length of the eye of a newborn is about 16.5 mm, while that of a full grown adult is about 24 mm."

I remember learning that the front of our eyes are already developed when we were born, but it's the back part of the eye that is still growing. (I'll look for the source of that information and post it here.)
One of Orion's old scleral shells, which was made while we lived in Maryland, sits next to a dime for size reference in a 2 framed image. The shell is wider than the dime.  In the top image, the shell is resting on the table and in the bottom image the shell is flipped over showing the "smooth, scooped out" back part of it that goes over the real eye.

The Scleral Shells

The "eyes" that go on top of his micro eyes are really called scleral shells or conformers. The clear ones look like contact lenses on steroids and aren't really clear anyway. I can confirm that because took a peek through them myself.

These conformers do not improve vision even though they look so realistic. Their purpose is for supporting his eyelids, to allow them to blink, to stimulate the bone in the eye socket and sinus region to continue to develop normally, and last but not the least, it improves human connection, too, when they are painted to look realistic.  Randy explained that one of his clients noticed that more people talked with her when she had the realistic eyes than when she didn't have them in. 

It is my understanding, as I've only 5 Orion years of experience on this topic, that you increase the size of the shells during the early childhood years and when your growth slows down, so does the need of changing the size of the shells.

Blue, it is!

It's a no-brainer that Orion's painted eyes would have blue irises.  The rest of the family all have blue eyes, too.  Orion's real eyes are blue, too.  The pupil of Orion's shells will be clear just like our own pupils are clear.  It just looks black because it is dark inside our eyeballs.


Back to the topic of blinking- if you look at your eyes using a mirror and you blink. Do you notice only the upper lid actually does all the blinking work while the lower lid lounges around? Maybe it's just me but go ahead and try that yourself and see what you find. In Orion's case, when he does not have conformers in, his upper lid is unable to blink. It just hangs there and often it gets behind the lower lid. That often caused him irritation. Leaving in the conformers 24/7 is recommended.

I bet you would throw off people who aren't lifting their own weight when you say, "Don't be such a lower eyelid!" 

I just used that line on Thomas and successfully confused him! (To his credit, it was a test and not an actual nagging moment.)

It's Never Too Early

Orion wore his first scleral shell at 5 months old (December 2010). He cried for a while when it was first put in but then that was it. No more crying.  You can read more about the path that led us to this moment in The Second Opinion: The Ocularist.  If his shell fits snugly, he leaves them alone and seems to prefer they stay in because when they're taken out, he rubs his eyes a lot.  If they're too small, Orion will pop them out and immediately loses them somewhere or plays with it in his mouth.  

"I'm Looking For My Son's Eye"

I know many people can relate to this line whether it's their child's, friend's or their own eye!  It's funnier later rather than in the moment.

I recall looking at Orion and suddenly realizing a shell was missing and after looking around in his crib I'd find it in his happy mouth.  So as of this recent Monday, there's an eye looking up from the ground somewhere in Dallas, Texas and a clear "eye" was lost on the world's "busiest" carpet in the world in a bowling alley/roller rink establishment in Lynnwood, Washington. And yeah, I've actually had to answer when asked what I was looking for, "I'm looking for my son's eye."  

Much to my delight, they helped us look for it.  So practical and straight-foward. No-fuss good samaritans. 

The Shells Don't Hurt/We Fear What We Don't Understand

The shells do not hurt Orion.  The most fuss he would make is if we don't get them cleaned when they should be cleaned (when he has a cold and gunk builds up on it) or if 6 months has passed since his last polishing.  The other times his other 6 tentacles would come out is when we need to take out or put in his scleral shells.  Orion is understandably defensive of his face, over his eyes, ears, mouth and nose.  It gets better when he understands what is going on and because of this he doesn't go Kraken on the medical professionals. 

What we do is tap on or near where the doctor will look or do something on.  We would offer him the stethoscope, otoscope, tongue depressor, toothbrush or any tool that is to be used.  Real things, experiences and routines teach Orion concepts quicker than anything else.

Insurance Coverage

The cost of the scleral shells all depends on your health insurance.  Our policy with our previous insurer, Kaiser Permanente, had 100% DME coverage.  DME means durable medical equipment and that includes wheelchairs, walkers, diapers, and yeah, prostheses! Unfortunately some insurance companies have lower coverage percentages like our current private insurance covers only 75% of the cost of DMEs.  If a special needs stroller costs $2,000, we'd have to pay the other 25% which would be $500.  Any help we could get was much appreciated, it's just a bummer to step down to that from 100% coverage from when we lived in Maryland.  

However, in October 2015, Orion was finally approved after 10 months (the epic struggle is another story to be shared) for Medicaid in Texas through the DeafBlind with Multiple Disabilities (DBMD) Waiver.  To be eligible you have to be legally deafblind and have at least one additional disability.

There is no age minimum to apply! (Many thanks to the parents of deafblind Texans before us who fought for this.) So, yes, Medicaid covered the cost of these scleral shells.

So that's how the eyes roll. ;)

Tuesday, March 22, 2016

Our Waardenburg Syndrome Connection

The first part of this post was originally written in May 2012 while we were still living in Maryland, I just found it in my private journal. Orion was 21 months old at that time. The information that reflects Orion's genes is the same with one new exception. He's unofficially not the only child with this.

May 2012

During our last visit at the National Institutes of Health I learned both copies of Orion's MITF (microphthalmia-associated transcription factor) genes are mutated.  One copy of my MITF genes is mutated, we have stumbled upon why I am Deaf.  I did go to Gallaudet's Genetics Clinic while I was a student there (the clinic is now closed).  The result then was that I didn't have the famed C-26 gene (Connexin-26) that they frequently tested for.  I was among the "20-30 percent of those who were deaf due to unknown causes". 
That's me in the middle sitting next to my little brother, Jeremy, and Forrest, a neighbor, laying on his side behind us. Photo taken probably in 1980-81.
My parents learned sign language for me.
No one knew why I was deaf... until I had Orion many years later.

We've made several trips to NIH's National Eye Institute to be evaluated, photographed, scanned, blood drawn upon the request of their bow-tied guru genetic ophthalmologist, Dr. Brian Brooks, and his team.  They zeroed in quickly on what gene to check. (Children's National Medical Center also sent out a couple blood samples to be gene-tested for other syndromes and they came back negative.) Samples of Orion and my blood were drawn on our 2nd trip and a few months later confirmed our MITF genes were affected.

During creation, each baby gets a copy from each parent to form 2 copies.  One copy of my MITF gene is deviant, excessively creative, non-comformist.  This is likely a de-novo mutation (first generation).  Orion's MITF genes went up one notch with both coming back with a mind of their own.  The whole genetic and physical makeup of Orion is a first of his kind.  The man behind the bow-tie said you can actually call it the "Orion Syndrome".  Sounds like a sci-fi flick!  However, it won't be named that way officially but we family members can call it any way we want in our house.  Tentatively and unofficially we are referring to this syndrome as Waardenburg Syndrome Type 2a+ (note the plus).

Everyone has 2 copies of the MITF gene. Everyone. 

If you have a mutated copy of the MITF gene on the short part of the 3rd chromosome, you have Waardenburg Syndrome type 2a.  That's what I have.  On NIH's website, the information is fascinating, especially when the description of the MITF gene and pigmentation issue makes sense related to Orion.(http://ghr.nlm.nih.gov/gene/MITF) This is where it gets fuzzy for me.  The way I understand this, because both copies of Orion's MITF genes are affected, it's something more and since its the first time it's documented in a human, we don't know what else that may be different for Orion. You would know what to expect during the lifetime of a person with a not-as-rare syndrome.

It's as if Orion is waving, "Hi, Mom."
A black and white MRI image slice done at Children's National (DC) showing one of Orion's hands when I was around 6 months along in my pregnancy.  Dark fingers are outstretched, amongst dark vessels and a lot of white areas.
I was truly surprised that we discovered quickly how Orion was deafblind.  As soon as we knew his eyes were seriously undeveloped in-utero more than 2 years ago, we wondered, "What happened?"

(He was diagnosed in-utero as having bilateral anophthalmia but after a visual inspection and another MRI following his birth the diagnosis was changed to bilateral microphthalmia.) I checked the labels of chemicals or paints that I thought I might have used around or before the early weeks of pregnancy.  Nothing appeared dangerous.  I'm glad the mystery is gone and it's not something stupid I did (if I did anything stupid).  It's all in the genes.  If we'd known beforehand about our genes and our odds of having a deafblind child, that probably wouldn't have stopped us anyway.  

It was fine with me that no one could figure out why I was Deaf.  The cause was .00000001 of who I am.  During our quest to find answers regarding Orion, we "accidentally" stumbled upon why I am Deaf.  "Oh, OK.  Cool.  Ohhh, that explains it.  Fascinating.  All right."

Thomas may have also been misdiagnosed all these years with branchio-oto-renal syndrome.

Orion's sister, Tasia's blood was drawn even though the genetics team suspected her copies of the MITF gene were intact.  Tasia's intensive eye exams, photographing, scanning came back normal. Thomas and Skyler will pay them a visit later this month and offer up an arm each to the lab technician.  Once Thomas wraps up with Bow-Tie, and the remaining gene test results come back the team will have the whole picture.  They are planning on putting together an article for a scientific journal.

Update in March 2016:

During summer 2012 we learned Thomas and Skyler have identical mutations on one copy their MITF genes!  I was impressed that it can actually be tested.  They could see and attribute Orion's genetic "misspellings" to each parent, one of Orion's MITF genes matched mine, and the other matched Thomas'.  Remarkable!

Tasia's MITF genes were unaffected, therefore she doesn't have Waardenburg Syndrome type 2a. She's not even a "carrier".

Orion on his platform swing,
sporting his blue long leg cast on
his right leg. August 2015.
If a couple, both having Waardenburg Syndrome Type 2a, have children, they could hit any one of three possibilities: 25% chance of a hearing child, 50% chance of a deaf child with Waardenburg Syndrome Type 2, and 25% chance of a deafblind child. That's exactly how it turned out for our family. Skyler is Deaf, Tasia is hearing and Orion is deafblind.

Before the end of June 2015, Orion was the only one of his kind.  Now he has a younger "buddy" in Clarisa Vollmar (you can find her page on Facebook, "Clarisa Vollmar", and you can read my blog post about the two at Two Of A Kind!).  I also kind of covertly set up on Facebook a page 2 years ago called, "A Mom's Musings: Orion the Kid" and started using it again. One day the two white-haired deafblind beauties will meet.

Thomas, Skyler and Tasia flew from Texas to Maryland to visit Dr. Bow-Tie in August 2015 for further testing, check-ups and a skin biopsy.  Orion could not go at that time since he was sporting a lovely blue long leg cast that would've made traveling unpleasant for him.

Orion and I finally went to NIH in October 2015 for the same testing our family members already did. Orion did amazingly well. We went to meet dear old friends and pay a visit to a legislative aide in the office of Texas Senator John Cornyn to share information about the Cogswell-Macy Act. It was a terrific trip and we've always appreciated our interaction with Dr. Bow-Tie's team (he wasn't wearing bow ties this time) and our stay at NIH's Children's Inn was a home away from home.

Our Family's Thoughts On Publishing Genetic Information

Since the beginning, Dr. Bow-Tie's team was interested in publishing an article about the genes behind Orion.  We were reluctant about that information becoming public.  As the short years went by, we realized the benefit of having this information out there was to be able to connect with someone else. Who knows if there's another family out there with a child like Orion, not realizing what he/she had? We gave NIH permission to publish their findings.  They had a few more tests they wanted to do before actually publishing, such as ruling out certain genes WS2a could be misunderstood for.  One popular assumption by just looking at Orion is that he has albinism, which he doesn't have. In the middle of all that, Clarisa was born!  She and Orion looked like they could've been siblings.  Ironically Clarisa's family is not one that is "way out there, unseen" but a family we already knew in the Deaf community!  (Note: Any questions about Clarisa's genes can be answered by her family.)

My Musings

I know in the future there will be more Orions and Clarisas, especially in the Deaf community since I believe many of us have Waardenburg Syndrome and don't realize it. Just like Thomas and I didn't know we had until our little wizard Orion was born. 
Orion and Mom do a selfie on the trampoline.
Image description:  Brown haired, sunglasses-wearing mom has white-haired Orion sitting in her lap. Orion's face is visible from the shoulders and up. The bottom third of the photo is the trampoline, center third is a wood fence, top third is the blue sky partly covered in tufts of white clouds.

Monday, March 21, 2016

An Orion Favorite: The HOPSA dress

I enjoyed attending Active Learning workshops here in Austin so much I went twice and I would go again. There's always something I overlooked or a new perspective on play for kids with additional needs that I realize. All our kids' job from birth to 5 years old is to PLAY! In Orion's case, we'll encourage him to keep on playing no matter what. We can see he tries new things physically and he enjoys it immensely. His glee is contagious!
“When I was 5 years old, my mother always told me that happiness was the key to life. When I went to school, they asked me what I wanted to be when I grew up. I wrote down ‘happy’. They told me I didn’t understand the assignment, and I told them they didn’t understand life.” -John Lennon

Here's a 5-minute snippet of the hours and hours over days that Orion spends playing in the HOPSA dress.

Disclaimer: It is very important to note, you really shouldn't let your kid play in equipment without the security harnesses it provides.  Don't try this at home, folks!

Thursday, March 10, 2016

The Cogswell-Macy Act: If It Were Already A Fact in 2012

Original photo by Clare Cassidy Photography, artwork by Heather Withrow.

If the functions of the Cogswell-Macy Act were already in place in 2012, two years after Orion was born, believe it or not, we may still be living in Maryland today!

In a nutshell, the Alice Cogswell-Anne Sullivan Macy Act is an improvement on IDEA (Individuals with Disabilities Education Act) particularly for students who are deaf and hard of hearing, blind and deaf-blind.

Texas is a hidden blessing, though.  It's a different kind of beautiful than I'm used to growing up in the Seattle, Washington area.  Austin is bisected by "Lake" Austin, just like the shipping canal, Lake Union and the Ballard Locks bisecting the Emerald City. Both cities don't have a professional basketball team.  Both cities have city-favorite post-secondary institutions in University of Washington and University of Texas. However, the resources available for my children are not similar to what is available in Texas.  Again, if the Cogswell-Macy Act features were already in effect nationally, the entire state of Washington would be educationally viable for my sons.  I would have had a great case for us to move to Seattle to join the rest of my family in the region where several generations of my extended family lived/lives.

Our situation in Maryland in 2012 was that with the diverse needs of our 3 children, no matter how we strategized it, only two out of our three children would have appropriate support and education in school. Our oldest son, Skyler, is Deaf, our hearing daughter is a KODA (hearing Kid Of Deaf Adults), and our youngest son, Orion, is DeafBlind.

We looked at 5 other states across the USA, the programs and services were so diverse. Coming out on the top for at least the Withrow family's needs, were the Texas School for the Blind and Visually Impaired (TSBVI), the Texas DeafBlind Outreach, and the Texas School for the Deaf (TSD).  Quite an impression was made on my husband and I seeing the qualified personnel working with Deaf and hard of hearing students at TSD and interveners working with deafblind students of various abilities at TSBVI.  What we saw was exactly what our DeafBlind son, Orion, needed to thrive in a learning environment!

Interesting tidbit: Thomas' father, Thomas, Sr., was born and raised in Dallas.  He graduated from Texas School for the Deaf in 1949.  He would've been so pleased he has grandsons at TSD today.  Thomas, Jr. was also born and raised in Dallas but since TSD was an overflowing district placement-only program at that time, his parents were unable to send him to TSD. Because of that, they moved the family to Maryland to enroll at MSD.  Thomas was 10.

Back to the main story line.  Sadly, the consistency and continuum in support and qualified personnel, both for Deaf and hard of hearing and deafblind students, as seen in Austin, Texas is not seen in all fifty states! 

Family members of deaf blind children in other states have contacted me (and I'm glad to help!) for advice how to get their DeafBlind child the appropriate support he/she needs. 

What is the point of having a free and minimally appropriate public education if you don’t have qualified personnel ready to help make it “stick” in a concrete, non-abstract way? 

We parents are not asking for a Cadillac education.  Even with a good ol’ Ford education what good is it if you can’t ‘see’ it in order to drive it?  That’s where trained and qualified personnel can and will make a difference!

"What you do makes a difference, and you have to decide what kind of difference you want to make."-Jane Goodall

Ah, I can dream of this happening in all fifty states, can I?  I'll dream and keep on trying to do my part for our children.  Sometimes I feel like a little speck with a little voice... but then I remember Dr. Seuss' Little Cat Z who has "Voom" in his tiny striped hat?  (In "The Cat in the Hat Comes Back", Voom went on to clean up all the mess the Cat in the Hat, plus the other cats B, C, D, etc. did! Everything!)  So, we need a Voom... no, a bunch of Vooms to make a boom for our children who have similarly-sized (a.k.a. low-incidence) "disability"! 

Who will be our Thing D and Thing R introducing the Cogswell-Macy Act on the Senate floor?
A Cat In The Hat with a mobility cane.
Illustration by Heather L. Withrow, 2016.
(Description: illustration of the famous tall red and white hat, sticking out of the bottom of the brim are black feet, black tail and a black hand holding a mobility cane.)

I know there are voomers out there.  Keep on vooming!  Deaf, blind and deafblind children should be able to get their free and appropriate public education exactly where they live. They should not have to move to the state next door or across the country.

Cogswell-Macy Act Information

Watch H.R. 3535, including sponsors by party, in govtrack.us: https://www.govtrack.us/congress/bills/114/hr3535