Posts Tagged ‘Call to Action’

Doing the Write Thing

A milestone many, many years in the making. It’s still a work in progress (especially the letter k), but it’s finally happening!

My boy is so proud of himself, so happy when he writes his name. It’s his new favorite thing to do and he does it everywhere — with his fingertip on the side of the bathtub at night, on the playroom walls, tracing his name on the glass of the storm door as we wait for the bus. When he thinks I’m not listening, I can hear him softly trying to sound out the letters one by one. “Mmmmm, ihhhhhh, kuh.” (He cannot articulate the sound of many letters, including N.)

Waiting for the bus this morning:

“What does that say, sweetie? What does it spell?”
His nimble fingers fly to his device to answer — name.

He knows it is his.

“That’s right, love, it’s your name. Can you say your name?”  Knowing full well he cannot articulate the actual sounds into one fluid word, I have no expectation of a response, but he tries; he always tries.

Today, however, he voices an unexpected and enthusiastic “Guh!

Startled, I smile widely and feel the sting of tears in my eyes.  He knows he has surprised me and his face splits into an infectious grin as he claps with glee at his cleverness.

My boy is nine. I don’t expect that he will ever use his laborious manual writing for more than signing his name, but I am so incredibly proud of his efforts and his perseverance; both are –in spite of the continuing state of flux of his health and his daily challenges– such constant facets of my amazing child.

The only things more constant are the love and pride I have for him.


Today, Wednesday, March 6, people around the world will unite their communities to Spread the Word to End the Word®, as supporters participate in the 5th annual ‘Spread the Word to End the Word’ awareness day, aimed at ending the hurtful use of… the R-word (“retard(ed)”) negatively impacting people with intellectual and developmental disabilities (IDD). Language affects attitudes. Attitudes impact actions. Special Olympics and Best Buddies International encourage people all over the world to pledge now to use respectful language at www.R-word.org and build communities of respect and inclusion for all people.  I hope you will add your voice in support of these efforts. Your life may not be graced by a loved one with an intellectual disability, but I am sure you know someone whose life is touched on a daily basis. The next time you hear someone using the term as a slur, please speak up. For your friends, your loved ones… for my child.

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Shine your light down on me
Lift me up so I can see
Shine your light when you’re gone
Give me the strength
To carry on, carry on

Shine Your Light ~ Robbie Robertson

Sometimes, you drop a pebble into a pond and you can see the ripples.  You can know the effect your actions have. Sometimes, the ripples become farther apart —so much so that you think the motion has ceased.

And sometimes, just sometimes, the ripples may not be visible to the naked eye because they have taken on a life of their own. They have gathered a momentum you could not have predicted.  And that momentum is powerful and beautiful.

I’ll let the words of a commenter on my last post speak for themselves:

Heather wrote:

Beth, I just want to let you know that your story had a real impact on Mr. W. We live across the street from Mr. W. This evening he and his family stopped over to personally deliver your story and our blue bulb. In fact, Mr. W. purchased blue bulbs for everyone on our cul-de-sac! We will proudly shine our blue bulb in honor of the child and families that are affected by autism.

For all those who wonder if a simple blue light can make a difference, just ask Mr. W., his employees and his neighbors.


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I believe that man will not merely endure; he will prevail. He is immortal, not because he alone among the creatures has an inexhaustible voice, but because he has a soul, a spirit capable of kindness and compassion. ~ William Falconer

It’s painful sometimes to see how our lives have changed through the years; how the path has diverged so greatly from where we thought life would take us, what we thought we’d have, where we thought we would be .  The kind of life we would give our children.  The fact that we thought we’d have more than one child or that we are now living on roughly one-third of the income we had when Nik was born but our expenses are pretty much the same or slightly more.  You know, those developmental toys and therapeutic items all add up quickly.  Not to mention time lost from work for hospitalizations, etc.

We know we are certainly not alone in having our lives turn out so different from what we envisioned as young(er) newlyweds and expectant parents.  Each person, each family, carries their own burden of sorrows with them.  Sometimes, they seem so unbearably heavy that there is a very real danger of suffocating under their weight, no matter how hard you try to keep them from crushing you.

Yet, somehow, in the midst of it all someone reaches out a hand through the magic of the internet and makes the impossible, well, possible.  Sometimes it’s with loving and supportive words to let you know you’re not alone and you’re not foolish or crazy— or whatever other self-denigrating adjective you’ve put on for the day.  And sometimes, the generosity of one person sets in motion something too wonderful to imagine it could be real.

The daily struggles to see the forest for the trees in a world of developmental delays, disabilities and medical challenges is difficult.  I try, I really do, to stay positive and hopeful and keep my eye on the bigger picture —and always on the joy that is my son.  But, sometimes, it is defeating to look around and realize there are opportunities I can’t afford to give him.  Not now, anyway.  My husband and I have learned a lot about ingenuity and making-do and we try not to ask for favors or charity.  Certainly not for ourselves and, rarely, for Nik unless it’s vital.

We’ve been blessed with a great state university which has a full-time program in disability studies.  One of the services they provide is an assistive technology initiative where anyone in the state may borrow gadgets, gizmos and devices to try for a two-week period.  It’s kind of an assistive technology lending library.  We’ve borrowed numerous items from them in the past, so when they got on board with iPads, I was excited!

Nik’s cerebral palsy, while appearing mild to the casual observer, leaves him with little ability to hold a crayon or a pencil.  He cannot control his movements enough to do more than scribble on paper no matter how hard he tries; even hand-over-hand is difficult for him when it comes to any sort of writing or drawing.  The concept of a mouse and keyboard are beyond Nik’s cognitive processing ability at the present.  I figured a touch-screen technology would make it easy for Nik to continue to expand his growing love of letters, numbers and words (ok, and YouTube videos, too!) and to be able to express his knowledge in ways that even his speech-generating device doesn’t allow him to at this time.

I’ll be honest, our first trial with the iPad, back in July, was a flop.  My expectations that Nik would miraculously grasp the concept of the programs we tried, would be able to control his fingers enough to create the desired results were too high; I had so much emotion invested in his success.  Nik, quite simply, wasn’t interested.  I returned the device with regret; I had become totally addicted to Angry Birds.  Nik, on the other hand, didn’t miss it at all.

Fast forward a few months.  With the daily exposure to school, Nik’s desire to learn and to do “work” —as he calls it on his speech device— grew rapidly.  It wasn’t until he was hospitalized in late October that I began to think he might be ready to try the iPad again.  The hospital has an amazing, state-of-the-art touch-screen TV/computer system in each patient room.  While Nik was confined to bed for the better part of five days, he was highly motivated to figure out how it worked.  While he couldn’t quite navigate with ease, he definitely caught on to the whole “I touch this screen and something cool happens” vibe.

With the change-over to his new school placement on the horizon, I decided to give the iPad one more chance before giving up entirely.  The difference a few months has made! Nik took to it like a fish takes to water.  He went from only mildly curious to avidly obsessed with the First Words spelling game (trial-version) and some of the simple matching and puzzle games.  His rapid facility has amazed us and given us significant hope that this could be a technology which would be useful for him in school.  But, we also knew the price was out of our reach.  Not just now but for quite sometime.

I posted some pictures of Nik with the iPad on my Facebook page and people began to comment that we should get him one.  I made it clear it was out of our reach right now.  That’s when the angels, the unicorns— the fairy-godmothers struck.

Shivon— who has a world of great karma due to her, I swear— sent me a private message to ask if she could set up something for people to chip in for an iPad for Nik.  I didn’t answer her for two days as I battled with my pride and my fear that people would think we were being greedy or presumptuous.  My love for my son and my belief in the possibilities before him won out. I told Shivon it would be ok.

Unbeknownst to me, while I was hemming and hawing and stalling, Shivon had already put her head together with Jess and Shannon to figure out the best way to achieve the goal.  Once I gave the green light, they were off and running.

As the money poured in —from places and people I’ve never even heard of as well as old and dear friends—I felt like an announcer on a public radio pledge drive as I emailed Shivon the updated totals. It was funny— and unbelievably humbling and moving at the same time.  In less than forty-eight hours the goal was not only met, it was exceeded. Nik’s iPad has been ordered!  Shannon even arranged for some of the folks from Moms With Apps to hold an “apps shower” for Nik; they sent codes for numerous apps for free to help us get started.  The generosity has been overwhelming.

I think my tweet from the first night of fundraising aptly sums up how I felt:

I won’t name all the names of the many contributors as I’ll be sending a special thank you to each of them once Nik’s iPad has arrived.  I don’t know if I will ever find words to adequately convey the depth of my gratitude for their generosity or to tell them just how much hope they have extended to our entire family.  Their selfless gesture has touched us in ways they may never know or understand.

But, the story doesn’t end here with Nik.

There are so many families just like mine —families with a wordless child or even adult member with autism.  Families who cannot afford to take advantage of such an incredible technology breakthrough without financial assistance.  Families who may not know the possibilities exist or who are too proud to ask for help.

This year, the HollyRod Foundation is giving away iPads to families who would not otherwise be able to afford them.  There is detailed information on the foundation website, including opportunities for people to make contributions to help others experience the miracle of communication, the wonder of discovery of the gifts which lay hidden within each wordless person.  Please give what you can and share the information with your friends, family and colleagues.  (For convenience, you may text HollyRod to 27138 to make your pledge at any time.)

Your gift, no matter how small, can change a life —a family—forever.

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 Blogging Against Disablism Day, May 1st 2009

I hadn’t expected to be posting anything for Bogging Against Disablism Day this year so it was serendipity that I found this heartening update to Delaware’s House Bill 119 (which I wrote about here and here, recently) in my INBOX this afternoon:

Lt. Gov. Denn and Rep. Terry Schooley held a meeting about H.B. 119 yesterday with disability and education advocates. They will be introducing a substitute bill next week that deletes the section on the extended school year and that exempts special education statutes and regulations from waivers (meaning schools and districts may not request waivers to special education policies, regulations, etc.)

We’ll look for the new legislation next week and keep you advised. In the meantime, we want to thank the Lt. Governor and Rep. Schooley for listening to our concerns. I also want to thank all of you who contacted your own legislators about this bill. The autism community was particularly cited as the community most concerned, so our voices were heard. This was a disability wide effort that included the 3 state disability councils, LDAF and the Arc of Delaware. We presented a united front and it was effective.

Theda M. Ellis, MBA, M.Ed.
Executive Director
Autism Delaware

United we can accomplish many wonderful things.  Thank you to everyone who contacted your legislators to voice your thoughts and concerns about this bill as it was introduced.  I look forward to the revised bill.

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Received today via email:

To Our Members and Friends in theDisability Community,


Lt. Governor Matt Denn has been in touch with us about HB 119, as has Rep. Terry Schooley and some others. All are assuring us that they will work with us to address our concerns about HB 119 and that the intent is to help kids with disabilities.


The Lt. Governor will be meeting with members of the DD Council, the Governor’s Advisory Council on Exceptional Children, and the State Council on Persons with Disabilities on Monday. Rep. Schooley is calling a meeting in early May as well.


Thanks to all of you who have called and e-mailed your legislators. It is making a difference. We will keep you advised as our discussions progress.



Theda M. Ellis, MBA, M.Ed.
Executive Director
Autism Delaware

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If you are autistic and live in Delaware, if you are the parent of or caregiver for an autistic person in Delaware, or if you know someone who falls into either category, please read the following items and take action to safeguard valuable services.


To our friends, family and members of the autism community,

Many things are happening related to legislation and funding that could have grave impact on our children and adults. Autism Delaware thinks it is time to advise you about our positions related to these issues, then we are asking you to write, call and meet with your legislators over these issues.  

  • School funding—H.B. 119 has been introduced which could potentially eliminate the summer program, give districts the ability to waive rules and procedures, and impact non academic programs such as respite. Please see the position paper we sent out earlier today.  At the same time, DOE wants to make changes in state funding which would open the code for the DAP [Delaware Autism Program]. Both of these possibilities would eliminate safeguards to educational services offered through the DAP such as changing staff ratios and effecting the summer program. 
  • Adult services—Potential cuts for the Division of Developmental Disabilities Services will reduce adult service contracts by 10% and could eliminate services to new graduates. This would mean there would be no programming for those who have left school and reduced staff salaries and services levels for those who do receive services. In one case, family members would have to stay home to care for their child and in the other; safety and quality will be reduced.
  • Insurance –Children with autism are not covered by insurance. Autism Delaware is proposing requiring insurance to cover ABA and other therapies needed by our children.  

The board, staff, and the legislative committee have been working actively with the Lower Delaware Autism Foundation and other disability organizations. Specifically we have done the following:

 ·         Established statewide legislative priorities for the entire autism community and established a weekly presence at the Legislature in conjunction with LDAF
·         Testified at Joint Finance Committee about the impact of funding cuts and the proposed elimination of services to students who will be graduating in June 2009
·         Met with Secretary Landraf to address our concerns and identify our priorities
·         Created a resolution to establish Autism Awareness month
·         Supported Cookie Day with presentation of the resolution in the House of Representatives and followed that up with a “Meet & Greet” event for members and legislators
·         Participated in Disability Awareness Day with further legislative visits
·         Drafted legislation calling for insurance coverage of ABA and other therapies for our children which should be introduced before the end of the session
·         Scheduled meetings with State Superintendent Lillian Lowery and Rep. Terry Schooley

During this process, we have met with and spoken to Senators Connor, Simpson, Sorenson and Venables and Representatives Atkins, Barbieri, Booth, Bunting, Cathcart, Gilligan, Hall-Long, Hocker, Hudson, Q. Johnson, Katz, Kowalko, Kovach, Lee, McDowell Schooley, Short, Schwartzkopf, Walls, Williams, and Wilson.   

With so many issues hitting at the same time we need your assistance. Please make an appointment with your Senator and Representative; write a letter or make a telephone call about the impact of these potential cuts on your family. If you need assistance finding your representative or writing a letter, please contact us and we will help you and/or provide a template for a letter. We are all working for our entire community, but each of us must work to assure our child’s future. It is up to us.


 Rob Gilsdorf, President
Autism Delaware


Position Paper on H.B. 119

Prepared by Autism Delaware and the Lower Delaware Autism Foundation
We have also used an analysis by Brian Hartman of the Disability Law Program.

House Bill 119 has been introduced to amend Title 14 of the Delaware Public Education Code. The stated intent is to allow more local control to districts over expenditures of state funds so they can save money.

Key Sponsors:  Rep. Schooley, Sen. Sokola
Reps. Bennett, Brady, Q. Johnson, Keeley, Longhurst, Manalokos, M. Marshall, Mitchell, Mulrooney, Plant, Scott, Viola, Walls, Sens. Blevins, Bushweller, Cloutier, Hall-Long, Henry, Katz, Peterson, Simpson, Sorenson, Venables

This bill is unacceptable and we need you to call your representative and senator to oppose it immediately. The State Code for DAP has been in place for 30 years, providing the infrastructure and staff ratios for a highly successful and innovative program.  The bill will negatively impact the Delaware Autism Program and educational services for students with autism (and other disabilities) in the following ways:

  1. It deletes the extended school year.
    Specifically, the bill deletes Title 14, Section 1703, subsections (e)and (f) which call for 12 month programs for children with specific disabilities including autism and allows extension of the school year for children with autism to be 1,425 hours. This is highly objectionable and will result in the loss of extended programming for hundreds of students with extreme disability profiles including our students. It totally takes away our children’s protection for an extended school year.
  2. It allows waivers to any regulation, rule, policy, and some statutes.  Any district and any individual school would be authorized to obtain a waiver of any regulation, rule, policy, prescribed course of study, and some statutes based on unclear criteria.  Everything is waivable!  History instructs that waivers often become the norm. Rather than meet the standard, the norm is to simply obtain a waiver.  The exception becomes the rule and legislative intent is undermined.  This could impact all our staff ratios including teacher/student, speech, psychologists, etc.
  3. The Legislature’s historical approach to waivers is to limit authorization by both discrete context and time and to monitor waiver effects.  For example, the authorization for a waiver of the 1-22 teacher/pupil ratio is specific to this context, must be reapproved annually, and is subject to analysis by the Department of Education (Title 14 Del.C. §1705A-1705B).  In contrast, H.B. No. 119 has no limits in context or time and contemplates no review.  Thus, schools and districts could be given indefinite or permanent waivers of some State laws and all State regulations.  So, what may begin as a temporary change to address a budget crisis can become permanent.
  4. The bill authorizes districts to cap hours of instruction for individual students with disabilities based on a unilateral administrative decision.  Such decisions can only be made by an IEP team with parental involvement, not through a unilateral decision by district administration.  Moreover, to avoid illegal discrimination (14 DE Admin Code 225; 34 C.F.R. Part 104), the minimum hours for students with disabilities cannot be less than the minimum hours for students without disabilities. 

This bill ostensibly gives districts greater local control. Local control will not help our students and we know that districts will not give parents all the information they require to build appropriate educational supports into the IEP. We need to maintain the code that guides the Delaware Autism Program to ensure that our students have staff ratios, appropriate specialists, an extended school year and respite. Parents fought for this code 30 years ago, and parents need to fight today to maintain it. 

Rob Gilsdorf                                                     John Willey
President                                                          President
Autism Delaware                                             Lower Delaware Autism Foundation


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