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A Refreshing IDEA in Special Education – Support the Cogswell Macy Act!

Alice Cogswell and Anne Sullivan Macy Act (H.R. 3535)
Named for the first deaf student to be formally educated in the U.S.A. and for Helen Keller’s beloved teacher, respectively, the Alice Cogswell and Anne Sullivan Macy Act will strengthen the Individuals with Disabilities Education Act to improve results for deaf, hard of hearing, blind, visually impaired, and deaf-blind children, including those with additional disabilities.

On September 17, 2015, a comprehensive Bill to reform the education of deaf, hard of hearing, blind, visually impaired, and deafblind students was introduced in the U.S. House of Representatives. Sponsored by Congressmen Matt Cartwright (D) and David McKinley (R), H.R. 3535, the Alice Cogswell and Anne Sullivan Macy Act, the bill will amend the Individuals with Disabilities Education Act to address the unique needs of these populations. This is truly a historic event.

The Act includes 3 sections. Title I addresses issues specific to the education of children who are deaf/hard of hearing, Title II addresses issues specific to the education of children who are blind/visually impaired, and Title III addresses issues specific to the education of children who are deafblind. Click Cogswell/Macy Act to read the full text of the Bill. TITLE III begins on page 40 of the Act and includes wording which:

Designates intervener services in the “related services” listing
Reflects the need for the recognition of and training for teachers of the deafblind
Adapts the federal definition of deafblindness
Requires each state to specifically address deafblind issues in the development of its state plan.

The Alice Cogswell and Anne Sullivan Macy bill now needs to gain the sponsorship of many more House members, and it needs to be introduced in the Senate. Please take a few moments to contact your Congressional members to ask them to sponsor this bill either by phone or email. You can find your state Senators by clicking here, and your Members of Congress by clicking here.

http://intervener.org/cogswell-macy-act/

What the Cogswell Macy Act Means To Our Family

To put it simply, the Cogswell Macy Act means hope! It means hope for families of children with hearing loss, vision loss, and deafblindness!

‘‘(E) SERVING CHILDREN WITH DEAF-BLINDNESS—When a State classifies children by disability, the State, in complying with subsection (a), identifies, locates and evaluates children with concomitant vision and hearing losses who are, or may be, classified in a disability category other than deaf-blindness, meaning concomitant hearing and visual impairments, the combination of which causes severe communication and other developmental and educational needs that adversely affect a child’s educational performance (and including children who are deaf-blind with additional disabilities), and provides (without prejudice to such classification) special education and related services to such children, including such services determined appropriate based on proper evaluation as would be provided to children  classified in the State as having deaf-blindness.’’

The reason I began my journey in advocacy is because Stephen’s hearing fluctuated from one test to the next. It seems he had shifted between the world of the deaf and the world of the hearing. The audiologists didn’t know what to make of the improvement.  They had previously reported to us that his hearing loss was permanent. Sensorineural hearing loss is typically permanent. As parents, the lack of answers we received, late diagnosis, and delayed early intervention as a result of lengthy referral process, were a source of unending frustration.

It was as if Stephen was just expected to be “all better now.” From our experiences parenting Stephen the idea was just ludicrous. Stephen had suffered the developmental impact of a catastrophic childhood seizure disorder. He started having uncontrolled seizures at 5 months old. It was a serious and sometimes fatal condition known as Infantile Spasms (see our story.)  We knew instinctively that our son still needed help to access the world around him.  It’s been nearly 7 years since the improvement in Stephen’s hearing.  Stephen remains non-verbal with limited language and communication skills.

If the Alice Cogswell and Anne Sullivan Macy Act existed when Stephen transitioned from Birth-To-Three into the local public school, the developmental impact of early loss would have been considered. Stephen would have been entitled to services as a deafblind child. Despite the fact that he had been classified under “developmental delay” and then “autism” and finally “multiple physical handicaps” before receiving the correct IEP disability classification as “deaf-blind.”

We would have received the services we so desperately needed for Stephen’s language and communication development and school readiness. Stephen would have had the services of an intervener, who could help address issues specific to combined vision and hearing loss.  His behavior would not have been so misunderstood and so often blamed on autism.  He might not be struggling with basic communication at the end of 4th grade and his future in 5th grade might not be so uncertain…

 

AUTISM and the Hurtful Misuse/Abuse of LABELS

As Autism Awareness Month (April) draws to an end, the topic of labels become prominent in my mind.  I’ve had yet another horrible experience with audiologists. My son is congenitally Deafblind, a term I don’t always use because of people’s preconceived stereotypes about what Deafblind means.

Audiologists often fail to understand the diverse community of people they serve. The reason – nearly all accredited audiology courses in th US have no requirement to learn about Deaf culture, American Sign Language, or Deafblindness. Autism is a prevelant diagnosis today, audiologists are usually somewhat familiar with Autism. SOMEWHAT FAMILIAR is a relative term.

Parents should know audiologists are by no means qualified to make an autism diagnosis, nor to apply the label to a child with a complex medical history.

Parents should also be aware that use of the autism label in the audiological setting is ill-advised. The reason – audiologists often fail to recognize hearing loss, auditory processing disorders, auditory neuropathy, Deafness (as in respect to language acquisition), blindness – particularly cortical visual impairment (the fastest growing cause of blindness), Deafblindness, as well as the combined effect of multiple sensory impatient and/or multiple handicaps, when a child is labeled autistic.

Deaf-blindness is a low incidence disability and within this very small group of children there is great variability. Many children who are deaf-blind have some usable vision and/or hearing. The majority of children who are deaf-blind also have additional physical, medical and/or cognitive problems. Children are considered to be deaf-blind when the combination of their hearing and vision loss causes such severe communication and other developmental and educational needs that they require significant and unique adaptations in their educational programs.

Autism and Deafblindness are two different and unique conditions.

Why Deaf-Blindness and Autism Can Look So Much Alike

 For example Autism does not cause abnormal findings on a Brainstem Auditory Evoked Response (BAER or ABR.)

The ABR is used for newborn hearing screening, auditory threshold estimation, intraoperative monitoring, determining hearing loss type and degree, and auditory nerve and brainstem lesion detection.

Hearing loss alone (with no other medical, behavioral, or social issues) significantly impacts language acquisition. A child with a mild hearing loss can miss 25-50% of spoken language in the classroom.

What Is Language? What Is Speech? 

What are the effects of different types of hearing loss?

What is hearing ability?

The current DSM-V diagnostic criteria for autism requires specification of:

With or without accompanying intellectual impairment

With or without accompanying language impairment

Associated with a known medical or genetic condition or environmental factor

***

Images Courtesy of:

I am not Autism – dnagengaCC-BY-NC-SA 2.0 Generic

see past labels – Krissy Venosdale – CC BY-NC-ND 2.0

I don’t know.” – Krissy Venosdale – CC BY-NC-ND 2.0

Creative Commons License
Love Support Educate Advocate Accept by Liana Seneca is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.

How To Motivate Me (part 3) It’s Doable

I’ve struggled these last few weeks. In my mind I know that I’ve accomplished so much, yet it feels as though it’s never enough. It’s hard to stay optimistic when it’s sink or swim and you feel as though you’re drowning…

The weight of hopelessness hangs heavy in the city air.  Everywhere I look people have no sense fo pride in their surroundings. No respect for themselves or others. They drown it out with drugs, alcohol and loud music all night long. My son runs around holding his ears and whining. He pulls me toward the door. He just wants to get out, and so do I.

Like prisoners we long for freedom. In our dreams we escape to a better place. A place we can thrive in security, knowing we have a home and a place we belong. We know that everything in this life is temporary and that better things await.

my seedlings (last year's)
my seedlings

Hardship, Perseverance, Character, Hope…

Faith.

Sadly, I feel as though the world has no place for us. Why don’t they understand? They seek a cure, but we don’t need one. They see disability were we see possibility. They think education is expensive, we know ignorance is even more expensive.

Is communication and literacy too much to ask from our community? I know special education costs money. My community pays for a certain quality of education for non-disabled children; but my community struggles with the negative perception that children with severe disabilities are a burden and not worthy of the cost.  Who are we to question who is and isn’t worthy of life?

hope

I have hopes and dreams like everyone else. Don’t stifle my hope. Believe in me. Know that I can do this. I’ll never give up. I’ll never stop trying. Everyday I amaze you. I accomplish more than you ever thought I could.

We may not all have the same abilities, but we have unique abilities. Everyday we learn and we grow.

I admit I’ve done my share of tilting windmills, struggling against seemingly futile causes. By its very nature, the victory is in the struggle. Who can win a battle, when he retreats in fear of loosing?

Imagine a world without disabilities, a world without special needs children. What kind of world would it be? A world of Stepford children and Stepford wives, with unnatural perfection – zombies, robots, lifeless and unhuman. Brainwashed into submission, they believe in man’s ability to create perfection. They’ve focused their energy on perfecting others, and neglected bettering themselves.

I see a world of possibility. Miracles happen everyday. I have a special child who brings out the best in me. He touches so many lives with his infectious laughter. He communicates joy without speaking a word.

So as parents, we struggle on believing that communication and literacy is possible and that we are capable of teaching him. We must always believe that the task is doable and that we are capable! We must guard our thoughts. The world has successfully educated deaf and blind children for hundreds of years.

For all of history, the worlds greatest thinkers have believed in possibility.

 For more on motivation watch this inspiring video by Dan Ariely : http://on.ted.com/Ariely

Image Sources:
Seedlings by Liana Seneca, all rights reserved
Hope Rainbow Mosaic by Nutmeg Designs – CC BY-NC-ND 2.0
Creative Commons License Love, Support, Educate, Advocate, Accept… by Liana Seneca is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.


Challenging Expectations

I sat and waited nervously for the pediatric neurologist, listening to the sounds of hospital monitors, hoping and praying that my son would live. We knew from the very start of the symptoms 12 days earlier, that something was wrong. On the 3rd day of these strange symptoms, the pediatrician in our church group thought it was gas. On the 8th day, parental instinct led us to contact our pediatrician for a more thorough examination.

in the hospital

For those of you who have not already read Our Story, our hospital stay began the Friday before Christmas. I feared the symptoms might get worse over the holiday. So I called the pediatrician, a sweet caring man, who listened to the symptoms I described.

in the hospital 2It was now Tuesday (the day after Christmas) and I had prayed frantically for 4 days, waiting for the prognosis. The pediatric neurologist was a very intelligent woman. At first meeting, she seemed to lack bed-side manner. She was very direct and honest right from the start – something that can only be fully appreciated in retrospect.

She told me my son had a life threatening condition called Infantile Spasms. She explained treatment for this seizure disorder was risky. The known complications of ACTH injections were: heart failure, liver failure, and intestinal bleeding. Without treatment uncontrolled seizures could lead to brain damage and death. The likelihood of severe mental retardation was over 50% even with treatment, and treatment had a success rate of about 70%.1st Christmas

It seemed like there were no good options. Terrified, I asked the neurologist what she would do if it was her child. She explained why she felt that ACTH therapy was the best option. Her experience with situations like this far exceeded my own, so I felt it was best to trust her expert opinion.

The 12th day with Infantile Spasms was the 3rd day of ACTH treatment. He was responding well and the duration and intensity of the seizures had improved. After many tests, EEG’s, MRI’s, CT scan, EKG, blood work, etc. I anxiously awaited the prognosis.

It was afternoon when the neurologist came back with the findings. There was no evidence of cerebral palsy on the MRI at this time, but it couldn’t be entirely ruled out yet. There was no evidence of tuberous sclerosis. There were no abnormalities in the structure of the brain, no evidence of brain injury, and there was no known cause for this life threatening seizure disorder. In fact the only abnormality noted was a benign pineal gland cyst deemed of no consequence.

Christmas in the hospital

I was left with a void where hopes, dreams and expectations once resided in my heart. I had no idea what to expect and I had no idea what the future would hold for my son. I grieved at the loss of unspoken dreams, but I never gave up hope. Over the next 7 years more was revealed. The picture began to form like pieces of a puzzle being put together.

With the dawn of each new day, new dreams were born, new hopes and new challenges.

Our son’s diagnosis include: cortical vision impairment (legally blind), failure to thrive, feeding difficulty, autism, epilepsy, hearing impairment (legally deaf), combined vision and hearing impairment (legally deaf-blind), food sensitivities, irritable bowel syndrome and/or inflammatory bowel disease (and suspected celiac disease which cannot be confirmed without the risk of making him sicker.) He is the epitome of special needs, and the joy of my life!

These are the lyrics to one of my favorite songs. The song is about the expectations we have for our children and challenging those expectations after a life changing diagnosis – The Good by Rachel Coleman (Signing Time):

The Good

It was you and me and the whole world right before us
I couldn’t wait to start
I saw you and dreams just like everyone before us
We thought we knew what we got

And then one day I thought it slipped away
And I looked to my hands to hold on
And then one day all my fear slipped away
And my hands did so much more

So maybe we won’t find easy
But, baby, we’ve found the good
No, maybe we won’t find easy
But, baby, we’ve found the good!

It was you and me and a new world right before us
I was so scared to start
I saw you and dreams just like everyone before us
But how did they move so far?

And then one day I thought it slipped away
And I looked to my hands to hold you
And then one day all my fear slipped away
And my hands did so much more

So maybe we won’t find easy
But, baby, we’ve found the good
Maybe we won’t find easy
But, baby, we’ve found the good!

Continue reading Challenging Expectations

Reflections on Life, Laughter, and Love

Live Well,
Laugh Often,
Love Much

The sign hung in the kitchen of my parent’s bright and vibrant home for many months, before being replaced by my chic step-mom with an equally family oriented sentiment.

family is forever

My niece quoted it on a beautiful day at the beach last summer.

live well laugh often love much

I too love the quote and I’m equally inspired by it. Family is the beginning of every story and if we’re among the lucky ones, every story ends with family. When all is said and done, it’s what matters most.

They say, “there is no I in team” but there is both an I and am in FAMILY. Family is the place where we all belong – each of us as unique individuals and collectively all together.

No matter who we are or where we come from, we all draw on our own personal experiences.

Continue reading Reflections on Life, Laughter, and Love

When “Normal” was Normal

Lately, I find myself trying to remember what normal was like. What exactly is normal anyway? I’m not sure I’ve ever really known “normal” but there was a time before I had a child with autism and special needs. It seems so long ago now, like a distant memory…

I recently restored old photos from a backup drive. I’m glad to have the old photos back within reach because I honestly can’t remember if everything was “normal” in the beginning. I had started to wonder if I had missed the signs of what was yet to come…  So I sit here looking at old photos and examining them for something I could have missed or something I’ve forgotten.

Stephen had the cord wrapped around his neck at birth. I don’t remember him being blue for long, but then I wondered…

I held him for a brief moment before they cut off the end of the cord...
I held him for a brief moment before they cut off the end of the cord…

Stephen was diagnosed with Infantile Spasms at 5 months old. I’ve heard that having the cord wrapped around the neck at birth is common in babies who have Infantile Spasms – especially when the exact cause is unknown.

I remember he cried right away when he was born. He started to get pink right away and they cleaned him up and next dad cut the cord...
I remember he cried right away when he was born; he started to get pink . They cleaned him up and then dad cut the cord…

 Infantile spasms is associated with a significant risk of mortality and morbidity. Riikonen has followed 214 infantile spasms patients for 20–35 years and has accumulated the best long-term follow-up studies of these patients. In her series, nearly one third of the patients died during the follow-up period, many in the first 3 years of life. Eight of the 24 patients who died by age 3 died of complications of therapy with ACTH…

I was induced at 9:00 am and Stephen was born by 6:00 pm. Here he is looking like a normal healthy newborn in his brother's arms.
I was induced at 9:00 am and Stephen was born by 6:00 pm. Here he is looking like a normal healthy newborn in his brother’s arms an hour later…

Without even realizing it we had a vision of what life would be like…

We could never have imagined what life had in store for us…

This was just the beginning of our story

Stephen is now 7 years old. His diagnosis includes: autism, epilepsy, GI disorders (gastrointestinal), hearing impairment, vision impairment, and neuro developmental delays. He is non-verbal and legally deaf-blind. He went through 6 years of weekly therapy for feeding difficulties, most likely caused by GI disorder. He is self-feeding and eating solid foods now. We’ve started potty training, and we’re finally making progress towards independence and self-help skills! 🙂

A Harvard Medical School analysis of electronic medical records suggests that some children with autism fall into one of three distinct subgroups based on common medical issues.

This post is in response to:Weekly Writing Challenge: Threes | The Daily Post
Continue reading When “Normal” was Normal

Fairy Godmother Syndrome (doing for others what they can do for themselves)

I’ve been very busy this past week and I haven’t had much time for the things I enjoy and want to do most. The Reason? Well, it could be Fairy Godmother Syndrome. Is that a real syndrome you ask? It sure is!

Continue reading Fairy Godmother Syndrome (doing for others what they can do for themselves)