Tag Archives: autism

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.

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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.

PPT meeting prayer for parents

With PPT season underway, I thought I’d share this updated post 🌷😊

Love Support Educate Advocate Accept

May my child’s love of learning grow.
May his teachers always know –
How to reach him,
How to teach him,
the way he learns best.

May I get a good night’s rest,
give me strength to do my best,
stay calm and strong –

To help him along,
to future education, employment and independent living…

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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.

Should I worry? It’s better to know.

It’s better to know. Does my son or daughter have autism? Is it possible that my son isn’t hearing everything I’m saying? Why doesn’t my baby look at me?

Fear of the unknown will keep us from reaching our true potential. When we know the facts we can make better decisions. The decisions we make will direct our path in years to come. These words apply to so many situations that we’re all faced with in life, but for parents knowing our children’s strengths and weaknesses will allow us to help them reach their full potential in life.

Developmental milestones in early infancy was one of my concerns. My son wasn’t reaching for or holding a rattle or exploring the small space within his reach. This was the only sign, such a small and seemingly insignificant sign, that something could be wrong. Sure he didn’t push himself up on his arms when I put him on his tummy. He didn’t want tummy time at all.

His older brother loved to sleep on his tummy as a small baby. At the time, it wasn’t recommended because medical professionals suspected a link between SIDS and infant sleeping positions. So we allowed him to get comfortable on his tummy while keeping a careful eye on him, and promptly turned him on his side as he drifted off to sleep.

But what does it all mean anyway? Should I worry? Well, the truth is maybe – maybe not.

Autism Awareness

As a parent, no words can instill fear like the words autism and special needs. I remember the first time I heard the words “developmentally disabled” used by my son’s pediatric neurologist to describe his future prognosis. I was crushed. If I could go back in time and know then what I know now, I’d see the future is uncertain for us all. I’d know that despite countless obstacles, I couldn’t be happier as a mother, and as an individual.


Image Sources:
48365 World Autism Awareness Day – CC BY-NC-SA 2.0
Autism Awareness – 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.

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…

Vacation

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We’re having a good time on vacation. Stephen lost his front tooth. I think he ate it. I noticed blood on his pillow and when I asked him he wouldn’t open his mouth. It seemed like he was crunching on something. He swallowed and then slowly opened his mouth. Missing tooth – nowhere we could find it. I guess he didn’t want the tooth fairy to get it 😉

Judging Without Being Aware

I’ve been so busy dealing with school and addressing Stephen’s educational needs – I didn’t get a chance to write or post anything last week. Dealing with school is one situation where I feel as though everything I say or do is judged without the administrators who are making the decisions knowing the facts.

I’m a little bummed out to have so little time with family this summer. Summer is the time of year I look forward to. This year we will be cooped up in our little apartment for 6 weeks – just so that Stephen can attend day camp for 3 hours a day 4 days a week. I’m not sure that attending the day camp (provided by the school district as a reparation for services that were not provided) is in Stephen’s best interest.

We’ve decided to give it a chance, and alter our plans as we see fit along the way. What about potty training? We specifically asked for the school to continue with potty training while he’s there. The district ignored our requests on summer school and potty training. Is 3 hours a day at a summer program more valuable than the independence he will gain by being fully potty trained at age 7? I’m wondering how much of the 3 hours a day Stephen will actually participate, and how much of the time he will just be waiting for mom and dad to come get him…

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

When is it ok for parents of special needs children to ever have a bad moment? Somehow all is documented in your mind, as well as, in other people’s minds. There’s no way that being angry where dishes are shattered, doors are slammed and a long drive away from it all are approved and seen as a way of release and not a permanent way of life. Sobbing uncontrollably. Living in isolation. Dressing in clothes of woefulness. Breathing the air of no hope. Sad songs on instant replay. Your mind becomes a nomad, wandering from confusion to disbelief to what? to why? to how? and never resting long enough to land at one spot. And to add weight to your worry, there’s the sting of onlookers. The ones who portray a life of perfection and make it their mission to be that constant reminder that your life is not perfect. Not only do they frown at…

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