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Posts Tagged ‘advocacy’

Did you know…April is Autism Awareness Month? If you don’t live under a rock, you’ve likely seen the latest figures released by the CDC last week regarding the rise in the rate of autism in the United States.  If you missed it, here’s the bird’s-eye view:

1 in 88 children  ~ 1 in 54 boys  ~ 1 in 252 girls

I haven’t yet had a chance to write my own post about what we are doing for Autism Awareness Month and World Autism Awareness Day. ( Read last year’s post here.), but I wanted to make sure I shared these posts from some of my very dear friends:

Mom-NOS: “The blue light reminds everyone who sees it that people with autism are…”
And as he stared out into the blue, he answered softly in a voice that came from a million miles away: “Awesome.”
(You can read the full post here.)

Jess: “Awareness is not the goal. It never has been. But it is the foundation without which no other change can happen.”
(You can read the full post here.)

Did you know that April is also the Month of the Military Child? Our military families are not immune to the effects of living with and loving family members with autism. In fact, they need our help.  Please, take the time to read the words of my friend, Rachel, who has been fighting tirelessly to change the inequities in the military health care system with regards to autism services.

In a post featured by Autism Speaks, Rachel writes: “As a military spouse and mother to a child with autism, I’m here to spread some multidimensional awareness by exploring how these two pieces of the puzzle fit together, or rather how they do not.”
(Read the full post here.  It includes information on the Caring for Military Children with Autism Act and how to contact your Congressional delegate(s) to ask for their support of this important legislation.)

I hope you will subscribe to the posts from The Thinking Person’s Guide to Autism. All month long, TPGA is featuring “Slice of Life” posts from Autistic people of all ages. Because, awareness is great but ACCEPTANCE is so much more important.

And, finally, I’d like to encourage you to visit the Autistic Self Advocacy Network.  The name speaks for itself as the organization empowers Autistics to speak for themselves.

If you don’t live with autism, it may be hard to understand why it is so important to listen to the voices of those who actually are autistic. These are the voices which will help us shape the future for our children, open the minds (and doors!) of employers, educators, business leaders and politicians about what is possible for so many people who are otherwise marginalized because of myriad manifestations of autism. These are the voices which can help us establish more and better supports for adults with autism once they leave the school system.

Their voices can help shed a light on the tremendous potential within each person regardless of how autism affects them. The potential within each person may not be the same, but the potential to be so much more than what meets the eye is far greater than you might imagine.

Only through dispelling the myths and the fears, through support and acceptance —true acceptance, can we empower each autistic person to meet their potential.

So, um, I guess THAT is what we’ll be doing for the month —and always; helping our son find his “voice” and meet his potential.

What's not to love?!

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I must admit, for years I thought all the hype about Apple products was just that…hype. I didn’t get the appeal, certainly not for a price point I really couldn’t justify.  Sure, I remember my sister’s first MAC and the goofy little icons and the weird mouse-thingy. I thought it was all kind of ridiculous and pretentious.  I was a PC gal through and through.  I sneered when my other sister became an early adopter of all things Apple —the iPhone, the iPod, etc. It became a badge of honor to me that I resisted the pull.

Then, just a little less than a year ago, some friends —with the generous assistance and kindness of some strangers— made it possible for my son to receive an iPad.  We had no idea whether he would take to it or what it might do for him. After all, my nonverbal, multiply disabled son had recently been diagnosed as mentally retarded (those were the words of the doctor) and we were told to prepare for a lifetime of care giving and not much else. We didn’t believe in the diagnosis and just knew we had to show the doctors that there was —there IS— a light burning fierce and bright within our boy.

Because of all the hype, we had borrowed an iPad several months prior, but Nik didn’t really get it. He struggled with the touch-screen; his cerebral palsy made it hard for him to control his hand movements. Isolating finger movements for tapping or making single strokes or swipes required for some of the simple apps we tried was a pipe dream.  We were reluctant to try again, fearful that the good will and generosity being extended to us would be wasted.

Nik’s new iPad arrived just in time for Thanksgiving —and shortly before his seventh birthday. We already knew that Nik loved letters. In fact, he is obsessed with them!  Not having a plan or any idea as to what might be good to try, we relied on the generosity of still more strangers —the fantastic people associated with  Moms With Apps— who donated free apps for Nik to try.

The advent of Nik’s Vantage Lite speech generating device in our lives, roughly two years ago, brought dramatic change; it gave Nik the power to communicate with us in ways that did not involve screaming, throwing, or slamming his head on the floor to express frustration. To date, no other technology has provided that for Nik. Even the iPad, with all its myriad communication apps, does not give Nik the ability to communicate in the manner which works for him. However, I do not exaggerate when I say the gift of Nik’s iPad changed our lives forever.

While the iPad cannot replace Nik’s communication device (yet), it has opened up the world to my boy.  It’s not about the technology, per se, but what is being done with it and the ways in which children like Nik can discover and be motivated to push themselves so far beyond what others have deemed his ability level. In the time Nik’s had his iPad, he’s taught himself so many things and has opened the eyes of those around him to the intelligence he holds in his wordless self.

Once written off as mentally retarded and not very teachable, Nik is now impressing his teacher and other professionals with his spelling abilities, his problem-solving skills and his manual dexterity. We are seeing cross-over and generalization of skills beyond the use of the iPad.

My child, who could not point his finger a year ago, can now actively show me what he wants me to look at even if he doesn’t have the voice or the words to describe it.  He can find music to soothe himself, videos to entertain or teach himself  new things —his interests run the gamut from ABC’s to DIY home repairs. (I told Niksdad to lock up his power tools, just in case!) It has opened up a world of exposure to peer interactions which are not otherwise available to my son —an only child. Video modeling at its finest.

Do I think it’s a coincidence that Nik has recently begin to approach children his own age for play and interaction —regardless of how clumsy the attempts may be? No, I do not.

Do I think the advent of the iPad means Nik will suddenly be able to live independently or go to college? Perhaps, perhaps not. But I do know that it’s made the idea that it may even be possible a part of the conversation. For that alone, you can call me a Fan Girl.

Steve Jobs was a visionary, an out-of-the-box thinker and a remarkable leader. I think his legacy will not be about technological innovation as much as his transformation of the way we connect to one another, the ways in which we open up new horizons for both those who would boldly step into the future as well as those for whom, perhaps, there was once no future.

Rest in peace, Mr. Jobs. You will not be forgotten here.

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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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[Author’s note:  This is not an April Fool’s joke.  These events really happened in my home. Today.]

Nik slept through most of the night; he woke for about an hour at 11:00 p.m. last night, asked for his book and had a temper tantrum when he did not receive it. (Tough luck, kiddo.)  I feel compelled to add that Niksdad and I lay in bed chortling with glee at both the impressive display of vocal histrionics coming through the monitor and the fact that this behavior was so, well, normal.

Nik went back to sleep around midnight and proceeded to sleep straight through until 8:15 this morning.  No, that’s not a typo.  In fact, we’ve had a few of those kinds of nights in a row now.  I haven’t mentioned it for fear of incurring the wrath of the sleep gods, but I honestly wonder if we’re turning a corner. 

To say the benefits of good sleep are plentiful would be a gross understatement.  Nik’s been eating better, playing more happily, cooperating more readily (swoon).  The leaps he’s making in communication have just blown us away.

Today, Nik managed to get his pants on and pulled up all by himself.  That alone is a herculean task for a child who has poor fine motor control, serious attention wanderings, and who won’t generally use both hands at the same time.  Oh, and he had to put down his beloved letters in order to do so.  HUGE.

Many of you know that we recently got Nik’s speech-generating device.  It’s been challenging to figure out how to tell you more about it since I am still learning “best practices” for implementing it and teaching Nik how to access what he wants to say.  It’s somewhat akin to giving a brand new reader the entire Encyclopedia Britannica and asking them to find the section on aardvarks. Overwhelming.

Nik —being, well, Nik— seems to have already figured out some of it for himself.  Just this morning he wandered over to his “green box of words”, turned it on by himself and proceeded to touch all the food choices to let me know he was ready for breakfast!  Granted, we had a few months’ worth of trials with a loaner so this is not completely new to us,  but Nik has been exploring and finding new words and trying them on for size.  I give him feedback for each word, trying to help him see that it’s not just a sound. 

Nik is discovering the power of communication.  He’s also realizing that it’s a reciprocal activity requiring a partner.  If I leave his device turned on and accessible to him while he’s playing, Nik shows little to no interest in exploring, unless he has something to say.  He already recognizes that this magical box is not a toy.

Ha! As I was writing the above paragraph? Nik turned on his device and told me he was hungry.  Using the actual word “hungry.”

The boy is voracious —not just for food.  He’s on a quest to learn all about the world around him and how to be in it, how to master skills to build on.  He wants to be with people and be social—he just needs our help in learning how to do that.  He has so much going on inside his beautiful head but doesn’t know how to get it out there.  That’s my job —to help him find his voice.  To empower him to tell us who he is, how he feels, what he thinks.

Our shared responsibility —yes, yours and mine? To listen when he communicates, to honor what he feels.  To nurture the potential he already knows is there.

April is Autism Awareness Month.

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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
www.delautism.org

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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