Tag Archives: hope

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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A Mother’s Love

What a beautiful story, I just had to share ❤

A Mother’s Love.

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Image: Rose Watercolor – by Liana Seneca
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This work is licensed under a Creative Commons Attribution-NonCommercial-ShareAlike 4.0 International License.

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Love Support Educate Advocate Accept by Liana Seneca is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.

Parenthood

I’m a huge fan of the show…

It’s been soooo long since I’ve written on this blog that I’m not sure anyone will notice…

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It’s been too long, WAY TOO LONG…

Parenthood is a demanding job, my hubby fell asleep with our 8-year-old in the middle of our queen size bed. He weighs 60 something pounds now, so maneuvering him out of my bed without waking him is something of a feat. I pull him by his feet to the bottom of my bed. Then carefully lift him over both forearms, bending my knees as I lift so not to break my back. (As if I could really carry a 60-something pound boy like a baby, in my arms, from one room to another.) Then I put his feet down on my bed and flop him over my shoulder while he and I both pretended he’s still sleeping. Then I stumble over the beanbag in the middle of the living room floor and barely make it to drop him on his bed with just a little bounce. I tuck him in and give him a kiss on the forehead.

 

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So much has happened since I last wrote that I don’t even know where to begin. So I’ll start with my latest muse.
I was watching the last two episodes of Parenthood on DVR. I know my hubby will be mad that I watched them without him, so I’ll do my best to keep a poker face, and pretend I haven’t already seen them. I really won’t mind watching them again – 2 totally heart-warming, touching episodes. And the spoiler at the end is just breaking my heart. Why do they have to do that with the spoilers. If my hubby was awake he would have insisted that we didn’t watch the “next week on…”

As I watch the show, I’m reminded of just how valuable time is, especially time with those we love. Never take for granted the moments that make up a happy life. Moments of joy and sorrow, fear and hope, love and loss.

The holidays have come and gone with all the typical hustle and bustle of the season. Barely a moment to stop and catch my breath. I sit down to write and I’m pulled away and distracted with daily responsibilities. It’s easy to think of time to relax as a luxury, one I often feel lacking. I sometimes forget, as many busy parents do, that time to unwind is an actual necessity in life.

Always the farmer’s daughter, I find myself ever aware of the cycles of life and constantly in awe of the beauty therein. So I take just a moment to reflect and draw inspiration from the change of seasons. The cold, wet winter days remind me of the challenges that are behind us and of those that lie ahead. Winter is a time of rebirth. A time of quiet, peace, patience, and perseverance – waiting for the spring thaw, for the seed to sprout.

I’ve been so busy since I wrote last. I’ve worked a full-time job special needs parenting, a second full-time job as a volunteer education and legal advocate, and a part-time job self-employed in property management (imagine that a job I might actually get paid for 😉 ) Struggling to make ends meet and to fulfill ALL of my responsibilities to the best of my ability.

I’m happy to report our recent success in educational advocacy. Stephen started at his new school 6 weeks ago. He is now in a “language learning environment” where he will learn to communicate, improve his listening skills, and make the most of his own unique strengths and abilities. He seems happy and appropriately challenged at his new school.

I’m sure other special needs parents out there will want to know the specifics of how we got to this point, but in the typical legal mumbo jumbo fashion there is a non-disclosure agreement with the city. Suffice it to say that knowledge is the key that opens many doors. My best advice to parents is know your rights, know your child’s rights, consider your options, tread carefully, and just put one foot in front of the other and carry on, never give up! A long journey begins with the first step! Take it one day at a time, one step at a time, and persistence pays off.

The first few weeks Stephen was downright giddy with excitement about school. He’s slightly less enthusiastic about returning to school after the holidays, a pleasant indicator that he is aware it’s back to work and back to the grindstone we go. I’m at ease knowing that he is communicating in his unique way that he’s being asked to work hard and learn new things at school.

I’m reminded of seasons past, first with the Birth to Three program – physical therapy, aquatic therapy, feeding therapy, and occupational therapy. Each time he progressed through seasons of dormancy and seasons of growth. The seasons of rest being the times he looked forward to his therapies, and the seasons of growth being the times he would drag his feet just knowing that he’d be asked to do some hard work, and the harvest season – a time of success, accomplishment, and fulfillment. Seasons that inspire and challenge us with anticipation of what lies ahead. regression, disappointment, and frustration mere stumbling blocks turned into stepping-stones.

So it’s off to school he goes, and I’m a little uneasy starting again, anew. I miss the old familiarity of professionals we came to know and love like extended family (aunts and uncles, cousins and family friends.) I’m wondering how they are and what new things this season brings… I’m missing the text messages, and the ease of communication with someone you know and trust, the friendly smiles, and familiar nods. I know one day we’ll be there again – with short sentences, and unspoken words…

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One Word Photo Challenge: White

One Word Photo Challenge White

This post is in response to: One Word Photo Challenge: White | Jennifer Nichole Wells.  For more weekly photo challenges click here: One Word Photo Challenge | Jennifer Nichole Wells.


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Love Support Educate Advocate Accept by Liana Seneca is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.

How To Motivate Me (part 3) It’s Doable

I’ve struggled these last few weeks. In my mind I know that I’ve accomplished so much, yet it feels as though it’s never enough. It’s hard to stay optimistic when it’s sink or swim and you feel as though you’re drowning…

The weight of hopelessness hangs heavy in the city air.  Everywhere I look people have no sense fo pride in their surroundings. No respect for themselves or others. They drown it out with drugs, alcohol and loud music all night long. My son runs around holding his ears and whining. He pulls me toward the door. He just wants to get out, and so do I.

Like prisoners we long for freedom. In our dreams we escape to a better place. A place we can thrive in security, knowing we have a home and a place we belong. We know that everything in this life is temporary and that better things await.

my seedlings (last year's)
my seedlings

Hardship, Perseverance, Character, Hope…

Faith.

Sadly, I feel as though the world has no place for us. Why don’t they understand? They seek a cure, but we don’t need one. They see disability were we see possibility. They think education is expensive, we know ignorance is even more expensive.

Is communication and literacy too much to ask from our community? I know special education costs money. My community pays for a certain quality of education for non-disabled children; but my community struggles with the negative perception that children with severe disabilities are a burden and not worthy of the cost.  Who are we to question who is and isn’t worthy of life?

hope

I have hopes and dreams like everyone else. Don’t stifle my hope. Believe in me. Know that I can do this. I’ll never give up. I’ll never stop trying. Everyday I amaze you. I accomplish more than you ever thought I could.

We may not all have the same abilities, but we have unique abilities. Everyday we learn and we grow.

I admit I’ve done my share of tilting windmills, struggling against seemingly futile causes. By its very nature, the victory is in the struggle. Who can win a battle, when he retreats in fear of loosing?

Imagine a world without disabilities, a world without special needs children. What kind of world would it be? A world of Stepford children and Stepford wives, with unnatural perfection – zombies, robots, lifeless and unhuman. Brainwashed into submission, they believe in man’s ability to create perfection. They’ve focused their energy on perfecting others, and neglected bettering themselves.

I see a world of possibility. Miracles happen everyday. I have a special child who brings out the best in me. He touches so many lives with his infectious laughter. He communicates joy without speaking a word.

So as parents, we struggle on believing that communication and literacy is possible and that we are capable of teaching him. We must always believe that the task is doable and that we are capable! We must guard our thoughts. The world has successfully educated deaf and blind children for hundreds of years.

For all of history, the worlds greatest thinkers have believed in possibility.

 For more on motivation watch this inspiring video by Dan Ariely : http://on.ted.com/Ariely

Image Sources:
Seedlings by Liana Seneca, all rights reserved
Hope Rainbow Mosaic by Nutmeg Designs – 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.


PPT meeting prayer for parents

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…
Continue reading PPT meeting prayer for parents

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

Not Giving Up

It’s something I struggle with. Something worthwhile for everyone. It’s advice that’s easy to give but much harder to take (Isn’t all advice that way?)

So why would I give up on myself – even though I’ve never really given up on anyone else? Even when I’ve lost all strength, I pray. Even when it seems like I just don’t care, silently I pray. We all fall short. I’m painfully aware of my own failings in life.

It may not always be the prayers of my youth, or formal prayers. (There is a time and place for everything.) Some days it’s just a positive thought I send your way. Some days when the pain is too great, and I can’t find my own words, it’s more of a chant or a meditation. Sometimes it’s long and repetitive like the Litany of the Saints. Some days it’s short and sweet.

Some days it’s a quiet walk enjoying nature, that renews my strength.

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Why then do I give up so easily on myself?

It’s a question worthy of asking…

Continue reading Not Giving Up

One Word Photo Challenge: Purple (Winter Sunset)

This week I’m posting a photo collage in response to: One Word Photo Challenge: Purple | Jennifer Nichole Wells  The first thing that came to mind when I read this week’s photo challenge wasn’t a picture I had taken but rather an image in my mind…

Continue reading One Word Photo Challenge: Purple (Winter Sunset)