Category Archives: education

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…

 

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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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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.

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

Monday Madness: What’s your vision for the future?

It’s Monday again, and I’m still exhausted from a busy weekend. It’s 4:25 and I haven’t gotten anything (scratch that) as much as I would like accomplished.

Last week we had a PPT (planning and placement team) meeting and the principal asked, “What’s your vision for the future?” Setting goals without a vision for the future is like building a house without a blueprint. We all need a vision for the future. “To make dreams real first you need to have them.” I read it in a fortune cookie, but I took it as words of wisdom and taped it up on my refrigerator.

So what is my vision for the future?

Image of iphone displaying digital clock, resembeling the control pannel in the time machine car, from the movie Back to the Future

Well, let me adjust the circuits on my iPhone to July 1st 2027. My son graduated high school this year. He is now 21 (disabled children in the United States are entitled to a free and appropriate public school education up to the age of 21.) Stephen is living in a multi-family home with his own apartment on one side and family on the other. He’s able to take care of himself and he’s well prepared for independent living. He has the support of his family/neighbors. He’s not all alone in the world. He can communicate his needs, wants, thoughts, and feelings.

"Future Earth" note the missing color (green.)
“Future Earth” note the missing color

Rewind to today,

Continue reading Monday Madness: What’s your vision for the future?

Monday Madness – Future Education, Employment and Independent Living

Here it is Monday again, where does the time go? I feel like crawling back into bed, curling up and going back to sleep. The weight of responsibility had me exhausted last night. Just thinking about the lists of things to do was overwhelming. My heart is not as healthy as it once was. I hate to admit, I’ve neglected my health for a while now.

My wonderful hubby picked up the slack for me last night. He gave our son a bath and sent him off to bed. I love to complain about my messy disorganized hubby, but he is truly a dedicated father and a family man. He loves his children more than they could ever imagine. I’m sure they wish he was wealthy (and I do too) but someday they will all grow up and realize the wealth he has is more valuable than gold. It’s a wealth that moths and dust cannot corrupt. It’s a wealth of experience, strength and hope.

Continue reading Monday Madness – Future Education, Employment and Independent Living

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