Category Archives: community

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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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.

A Time to Every Purpose

pinzon-velvet-plush-twin-blanket-navy-2This April we’re celebrating Autism Awareness Month! Will you Light It Up Blue with me? Will you take part in some random Autism Kindness Acts? Maybe a night off for some autism parents you know? (I know I’m not the only autism momma out there that doesn’t want to ask!) Right now I’m thinking of my nice, warm, cuddly, blue fleece blanket. I’m so tired.

3-piece-spa-blue-taupe-reversible-bedspread-quilt-set-queen-sizeI saw some pretty blue quilts and sheets advertised in the weekend paper. Let’s face it, my autistic 7-year-old doesn’t really want to go shopping with me. My hubby doesn’t either, for that matter. When we go out shopping, you never can predict who will have a meltdown first – my hubby or my son! I’m so grateful to live in a day and age when I can do some shopping on the internet. Nothing beats shopping in my pajamas! 🙂

If I could hop in a time machine, I think I’d fast forward to a day when my son is prepared for further education, employment, and independent living. I’d sigh with relief and a tear of joy would run down my cheek.

I’d fast forward to a day when parents of children with autism and special needs no longer need to fight for a “free and appropriate public school education.” A day when there are measures in place to enforce the Individuals with Disabilities in Education Act, for all children in need of special education. A day when enforcement of federal law is no longer the duty of overwhelmed parents. A day when exhausted parents can sleep soundly without worry because the community is standing together in support. “I have a dream…”

in the hospitalStephen had a life threatening seizure disorder in infancy, and cortical vision impairment (blindness) at 18 months old. By age 2, my son received his 3rd life changing diagnosis – AUTISM. There were still many life changing diagnoses to come, but this one was the hardest to accept. It came as confirmation that Stephen’s neurological condition was even more likely to cause intellectual and developmental disability. The cards were stacked against him, but we weren’t giving up. How could we give up?

light it up blue for autism awareness
Light it up blue!

My son’s first day of school was one of the longest days of my life. I was so worried, I had left him in the hands of strangers. He wasn’t walking, talking, or feeding himself. He was still eating baby food from jars and pediasure from baby bottles. I watched the clock until it was finally time to pick him up off the bus. It’s hard to imagine what it’s like to be the parent of a child with autism or special needs until you’ve walked a mile in our shoes, or carried your baby to and from the school bus on the first day of school!

school bus
Everyday Life on My Street

My son has improved so much over the years. Early intervention services are key for so many children like him. He started walking at just over 3 years old. He still wears leg braces and crawls up the stairs, but he no longer qualifies for physical therapy services. He still struggles with both gross and fine motor skills and mobility due to low muscle tone and neuro developmental delay. He started feeding himself at age 5, and progressed to solid food at age 7. He still wears a diaper out in public, over night, and in his regular education classes. He’s potty training at home and in his special education class room.

first day of preschool
First Day of Preschool

He still holds my hand for safety – on the street, on the sidewalk, in parking lots, and on the stairs. He still squeals with delight when we play peek-a-boo. He’s quite entertained with anything he can prompt you to say without speaking a word. He still thinks my silly songs, with words I make up to his favorite, familiar, childhood tunes are worthy of all the adoration that is given to the stars. He’s no more responsible for the noises he makes in church than he was on the day of his baptism.

baptism lit up blue

Don’t get me wrong, we set our expectations high and we encourage him to be on his best (and quietest) behavior. We know that he won’t learn social skills without practice. So forgive me if we don’t wait outside in the car, where neither of us can hear. Instead we teach our son to listen. We sign to him in ASL and remind him when it’s time to listen, time to sing, and time to go. You really don’t need to turn around while the preacher is preaching and ask me if there’s something wrong with my son. I’ll politely tell you he has autism.

Please don’t embarrass my mother with your disapproving looks. She hasn’t had the years of practice that I’ve had, learning to “turn the other cheek.” I won’t tell you what I’m thinking, or respond with an equal measure of disapproval. No need to apologize for asking (but you should be more capable of listening to the preacher and less distracted than the 7-year-old boy behind you.)

I have changed the theme of my blog to blue  in honor of autism awareness. I’ve added blue framed photos to my social networks.  I lit up my profile pictures blue.

Light It Up Blue - Neon Personality

Will you support the family of someone with autism at the store, at school, and in the community? Will you wear blue this month in honor of autism awareness? Will you light it up blue this April?

This post is in response to:
Weekly Writing Challenge: Time Machine | The Daily Post
Weekly Photo Challenge: Street Life | The Daily Post

You may also like:

picture of me and Stephen
Who I Am and Why I’m Here

Image Sources:
all portraits/images of people (in this post) are
by Liana Seneca ©2014, all rights reserved
pinzon-velvet-plush-twin-blanket-navy-2 – by ValerieRoberts
Spa Blue/Taupe Reversible Bedspread/Quilt Set King –
by ThompsonAlyssa
Creative Commons License
Love Support Educate Advocate Accept by Liana Seneca is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.

A Mile In My Shoes

Well, this morning we got off to a late start. We didn’t have time to practice self-help skills. Every day I like to spend a few extra minutes helping my 7-year-old practice the things he isn’t able to do independently – like dressing himself, climbing the stairs, pulling up and down his pants (as part of potty training), and of course communication skills.

My son, Stephen is completely non-verbal. Part of teaching him to communicate is not anticipating every need.  It takes patience to allow him to express his wants, needs, feelings, and thoughts. Continue reading A Mile In My Shoes