Tag Archives: ASL

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…

 

Advertisements

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

“Can’t” Should NOT Be In Your Vocabulary

This short bio also includes a TED talks video. What an inspirational story! There’s so much we can all learn from her!

Forever Free | Georgia Pathway to Language & Literacy

A native of Albuquerque, N.M., Rachel Kolb sees effective communication as essential to ideas, creativity and progress.  She received a BA with honors in English from Stanford and graduated in June 2013 with a coterminal master’s degree in English. While at Stanford, Kolb has been active in the Stanford Equestrian Team, Leland Quarterly, Stanford Daily and Stanford Power to ACT. She aspires to be a writer, scholar and public disability advocate. Kolb was named an American Rhodes scholar in November 2012 and will pursue an MSc in contemporary literature at Oxford beginning in October 2013.

She is also a deaf adult.

View original post

A New Year, Complete with New Challenges and New Adventures #whyIsign

 

 

What will this year bring? More challenges with an under staffed school district? More budget cuts for special education? OR by some miracle, PROGRESS? I’m hoping (and praying) for the latter.

Our son, (who is legally deaf-blind) started the school year without his 1:1 paraprofessional. As parents, we had heard the news that the district had laid off ALL of the union paras (and almost the entire support staff for special education.) We talked about it and we decided worst case scenario we get to school and our son has no aid, then we bring him back home with us and he doesn’t go to school… That would be where we, as parents draw the line.

Our son is 7 years old. He is completely non-verbal.

Like many parents who first receive an autism diagnosis, we didn’t know what to do next. Piece by piece we discovered our son’s disability, like putting together a puzzle of neurological developmental delays.

By age 2 our teacher of the visually impaired from the Board of Education and Services for the Blind had begun to suspect a hearing loss. After a BAER (brainstem auditory evoked response test), follow-up tests with the ear nose and throat doctor, and repeated visits to the audiology department at the children’s hospital, the audiologist diagnosed Stephen with unilateral moderately severe hearing loss (legally deaf on one side)  The audiologist told us that our son had permanent deafness that could not be improved with hearing aids. We have been using ASL with him ever since. #whyIsign #askmewhyisign

Just a year before the hearing impairment diagnosis, the eye doctor told us Stephen was legally blind. Stephen’s eyes had drifted apart and there were obvious signs of problems with his vision. Stephen has  Cortical Vision Impairment. CVI is a neurological vision problem.Our teacher for the visually impaired informed us that combined vision and hearing loss made our son legally deaf-blind.

Continue reading A New Year, Complete with New Challenges and New Adventures #whyIsign