Tag Archives: blind

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…

 

What would the REAL Helen Keller have thought about AUTISM?

Her teacher was known as “The Miracle Worker.” In the 2000 Disney movie, Hellen was believed to have become deaf, blind and intellectually disabled due to illness as a young child.

Alabama_quarter,_reverse_side,_2003
Hellen Keller is said to have been quite an unruly child. She was prone to fits and tantrums, she screamed, she grunted, even hit & bit her teacher.

What compassion her teacher must have had to see in her potential? Her teacher was also known for her tempermant. She too was a fighter. She refused to give in to despair and fought against her own self-pitty.

"Optimism is the faith that leads to achievement. Nothing can be done without hope and confidence." Helen Keller

Helen Keller is best known for being Deafblind, her acedemic achievements, and advocating for the rights of disabled individuals.

798px-Drano_Lake_accessible_fishing_platform_signage
I’m on a mission to find out what these legendary disability advocates would have thought or said based on historical facts. What would they have said about those who are not “neurotypical”? How would they have felt about autism and neurological developmental delays? What rights would they have fought for? Would they have fought for these children to be given equal access to language learning, American Sign Language (ASL), or Augmentive and Alternative Communication (AAC)?

Helen_Keller_with_Anne_Sullivan_in_July_1888
I have so many questions I would ask them…

Image Source:

Optimism – Helen Keller, by Liana Seneca
Helen Keller – Spirit of Courage – wiki commons
Americans With Disabilities Act – wiki commons
Hellen and her teacher, Anne Sullivan Macy – wiki commons

PPT Season, Tears, and Frustrations

Yet another phone call from school, and I’n choking back the tears…

 
I hope and pray for a place where he too can belong. Stephen is Deafblind and everyday we challenge the misconseptions we’re met with. 

So far we’ve been through 4 placements and this 5th one may not be his last. He was in a 50/50 preschool class, the autism program, the MPH (multiple physical handicap program, the KEY program, and now the school for the Deaf. He’s in 4th grade now with severe language and communication delays. There are only 2 programs that I know of nationwide that specialize in Deafblindness. The thought that maybe there just aren’t any schools in state equiped to deal with his primary disability is terrifying. 

So I pray for the courage to fight another day, to not give in to despair, to see the infinite world of possibilities that I see and for just once to meet a teacher that sees the same.

Always About The Child

Awesome post from a fellow blogger! These are the same feelings that influenced my earlier post (Autism and the Hurtful Misuse/Abuse of Labels) For parents it’s always about the child! Teachers and professionals please keep this ever-present in your mind!

Portia Dawson "My Son, His Voice, Our Journey"

AlwaysAboutTheChildPic

A month ago, my husband and I requested a school autism assessment to be done on our son, Callie. It’s been awhile, and since Callie is going to high school next year, we wanted to see where he is now, especially in the areas of Reading, Math and English. This is a new school, new district and new year — why not enter in high school with updated results? The diagnostician organizes, carries out and supervises the testing. He or she is the one who analyzes and evaluates the learning difficulty of a student and recommends ways to help and support that child. Although this being true, the definition and this district’s current diagnostician should not be in the same sentence. She is definitely not a favorite and I’m pretty sure I’m not her first pick for parent of the year. Callie’s transition into the district was nothing short of…

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Hunting Goodwill 

Well here I am finally… but how did I get here? I’m writing on my phone now because my little guy stole my seat as usual. He then proceeded to spin around on my computer chair, and naturally didn’t notice the cords. He was tangled! He stood up and crash there goes my laptop. The battery pops out and the cord has become disconnected, I pick it up knowing my dear old windows laptop may just have seen better days, but the screen isn’t cracked thankfully. So I set it to the side for investigation at a more convenient time (if I can find one.) When I finally got around to checking it out, I found the screen was blank and dark – no picture 😕

Now I should tell you what brings me “Hunting Goodwill” otherwise I might just get lost in a tangent or distracted by something decidedly more important.

So I’ve done a lot of thinking and God forbid I pick up a pen and go back to the stone age, my finger is cramping just thinking about it.

For those of you who know me, you know my life is complicated and never uneventful, but sometimes we all need to stop and catch our breath. I’m a special needs mom after all. It’s a high stakes game, very stressful, but the victory is enormous.

Today I’m thinking about the struggle, the fears and failures, the desperation. Dare I say the hopelessness – but I’ll never go down without giving the devil his due. I’m not giving up. That’s what I’m talking about “Hunting Goodwill.”

Yeah I’m struggling, I’m always struggling, but that’s what life ‘s about. Another year has passed and I look at my accomplishments, and it’s never enough. So I dust myself off and try again, try again.

I’ve been thinking about talking another run at potty training my 8-year-old, non-verbal, deafblind, autistic, Angel.  (Labels are just labels after all.) He’s my son, and I’d never give up on him. He’s truly an amazing person with innate potential.

We all have our own unique strengths and weaknesses after all. I’m not going to get hung up on negative emotions. I’ve spent two days researching the best approach and the real $ cost involved and I’ve come up with a number, which of course I don’t have. Have I mentioned having a special needs kid is expensive? I feel guilty for saying that but it’s true. There’s some shame in knowing that I’m failing to provide financially. I take one look at my son, and I realize I do have success.

I have faith that some people spend their entire lives in pursuit of. Spirituality I’m grounded like the tree that’s planted by the water. I have a gift in that it comes easy to me like the piano to Beethoven. I’m always “Hunting Goodwill” like “Good Will Hunting” I struggle with fear and fear of failure, fear of loss. I know I have something far more valuable than material wealth.

Who knew training pants could run around $30 – $50 each for an 8-year-old? Size 3T is what $10-$15 for 5 or 6 pairs. How many do we actually need anyway? Well, the experts on cloth diapers agree on 10 or more as a minimal amount. Potty training experts estimate 12-18 pairs depending upon how often you can and will do the laundry.

Do you have some goodwill to share? Every little bit counts. It all adds up. I’ll update you shortly on the details but for now I’m going to get back to my movie. I need to blow off some steam because before you know it the engine will be running full speed ahead…

One Word Photo Challenge: White

One Word Photo Challenge White

This post is in response to: One Word Photo Challenge: White | Jennifer Nichole Wells.  For more weekly photo challenges click here: One Word Photo Challenge | Jennifer Nichole Wells.


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

learning how we learn

When educating a child with autism or special needs it’s important to take a look at how we learn. But wait a minute, if this works, won’t it work for me too? Of course it will! Let’s take a look at the science behind how we learn new skills. Every time we learn a new skill the brain forms new connections.

Continue reading learning how we learn

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

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)