Tag Archives: non-verbal

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…

 

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

20140702-150234.jpg

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 😉

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?

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

Blogging for my Sanity

It’s amazing how much things have changed in the few short months since I started blogging.

My 7-year-old, non-verbal son is sitting in a nice warm sunny window watching Alphabet Amusement Park on Netflix. Over the last few months, he’s learned to navigate Netflix on the iPad like a pro. He unlocks the iPad with a pass code and without assistance, get’s on Netflix and chooses the correct user account (so that Netflix will stop prompting me to watch Leap Frog, Signing Time, or another movie/tv show for children that I’m already singing the theme songs to as I drift off to sleep every night…)

My blog has become a journal of personal experiences, a place to be myself, and to renew my strength. At first I wasn’t sure anyone would want to read what I wrote. My adventure in advocating publicly for children with autism and special needs began with a Facebook page. I quickly realized inspirational quotes, funny sayings, photos and bad news were the most popular Facebook posts. I was disappointed. I didn’t reach as many special needs parents as I had hoped. The resources I found over the past 7 years weren’t getting much attention. I had spent hours researching, reading, and learning how best to help my son, and I wanted nothing more than to share what I had learned, hoping the considerable effort I made would save some other exhausted parent time and energy.

Continue reading Blogging for my Sanity

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.

One Word Photo Challenge: Red (Apple Picking with Great-Grandma)

One of our favorite family activities is apple picking at the local orchards. This photo reminds me of a time that was particularly special. It was one of our last family outings with Great-Grandma. She’s no longer with us and we miss her so much – her light-hearted humor, her stories, and her princess personality. She was always the princess – even in old age.

01b866a17d5a7dbc4ab93d82c2a4251ca1c93343f4

My grandma had Alzheimer’s. It seemed funny to me that even when she could no longer remember that my father was not my brother and her daughter was not her mother, she still remembered little Stephen had Autism and couldn’t talk. Stephen and Great-Grandma had a special silent connection that was beyond words! We love and miss you Grandma ❤

01a1fc3ed6199b00dff1fbe1462a1abf66326bc1e7

This post is in response to: One Word Photo Challenge: Red | Jennifer Nichole Wells.

For more weekly photo challenges click here: One Word Photo Challenge | Jennifer Nichole Wells.

Continue reading One Word Photo Challenge: Red (Apple Picking with Great-Grandma)

When “Normal” was Normal

Lately, I find myself trying to remember what normal was like. What exactly is normal anyway? I’m not sure I’ve ever really known “normal” but there was a time before I had a child with autism and special needs. It seems so long ago now, like a distant memory…

I recently restored old photos from a backup drive. I’m glad to have the old photos back within reach because I honestly can’t remember if everything was “normal” in the beginning. I had started to wonder if I had missed the signs of what was yet to come…  So I sit here looking at old photos and examining them for something I could have missed or something I’ve forgotten.

Stephen had the cord wrapped around his neck at birth. I don’t remember him being blue for long, but then I wondered…

I held him for a brief moment before they cut off the end of the cord...
I held him for a brief moment before they cut off the end of the cord…

Stephen was diagnosed with Infantile Spasms at 5 months old. I’ve heard that having the cord wrapped around the neck at birth is common in babies who have Infantile Spasms – especially when the exact cause is unknown.

I remember he cried right away when he was born. He started to get pink right away and they cleaned him up and next dad cut the cord...
I remember he cried right away when he was born; he started to get pink . They cleaned him up and then dad cut the cord…

 Infantile spasms is associated with a significant risk of mortality and morbidity. Riikonen has followed 214 infantile spasms patients for 20–35 years and has accumulated the best long-term follow-up studies of these patients. In her series, nearly one third of the patients died during the follow-up period, many in the first 3 years of life. Eight of the 24 patients who died by age 3 died of complications of therapy with ACTH…

I was induced at 9:00 am and Stephen was born by 6:00 pm. Here he is looking like a normal healthy newborn in his brother's arms.
I was induced at 9:00 am and Stephen was born by 6:00 pm. Here he is looking like a normal healthy newborn in his brother’s arms an hour later…

Without even realizing it we had a vision of what life would be like…

We could never have imagined what life had in store for us…

This was just the beginning of our story

Stephen is now 7 years old. His diagnosis includes: autism, epilepsy, GI disorders (gastrointestinal), hearing impairment, vision impairment, and neuro developmental delays. He is non-verbal and legally deaf-blind. He went through 6 years of weekly therapy for feeding difficulties, most likely caused by GI disorder. He is self-feeding and eating solid foods now. We’ve started potty training, and we’re finally making progress towards independence and self-help skills! 🙂

A Harvard Medical School analysis of electronic medical records suggests that some children with autism fall into one of three distinct subgroups based on common medical issues.

This post is in response to:Weekly Writing Challenge: Threes | The Daily Post
Continue reading When “Normal” was Normal