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Courage doesn’t always roar. Sometimes courage is the quiet voice at the end of the day saying, “I will try again tomorrow.” ~ Mary Anne Radmacher

After our terrible, horrible no good, very bad morning you might think that Niksdad and I decided to lay low and stay close to home this afternoon.  You’d be mistaken.  After a hearty lunch and some down time for Nik —and a healthy dollop of analysis and brainstorming by Niksdad and me— we decided to try our luck a second time.  After all, the festival is only one day a year and the orchard offers free peach ice cream cones—made from their own peaches— which is heavenly!  Even Nik adores it.

I am happy to report that the outing was a rousing success!  Nik managed to consume an entire cone by himself —along with a goodly portion of mine!  We even managed to get in some play time at a nearby park which we’ve recently discovered.  Nik was so happy all afternoon; he sang and clapped and raced around the park without a care —exactly as we had hoped it would be.  He even picked up a sweet little guardian angel!

I don’t think it’s an exaggeration to say that our afternoon was the antithesis to our morning. 

So what was different the second time around?  Nothing, really.  And everything.  I know, I know —that doesn’t make sense.  But, really, the things we did were so incredibly simple that I wasn’t even sure it would work.  We met Nik where he was.  To do that, we had to observe his behavior and listen to his cues.

Let me give you a little background which might help this make sense:

Nik is nonverbal but extremely intelligent.  He understands just about everything that is said to him, about him, around him.  He takes everything in.  He also has a very strict interpretation or understanding of certain constants.  One of those constants is that food is eaten while sitting in his booster chair at the table unless it is otherwise specified. e.g., “We’re going to Nanny and Granddaddy’s for dinner.” or “We’re going to a restaurant for lunch.”  (Snacks are a different category; he’s ok with eating them in the car, at the park, play group, etc.)

Nik is also usually very good about adapting as long as he understands the sequence in which he can expect things to occur.  Nik knows ice cream is food.  He doesn’t know that “going to get ice cream” means going somewhere —let alone somewhere new —in the car.  So, to Nik, “ice cream first, then park” would mean “We’re going to sit at the table and eat ice cream and then go to the park.”

Nik is also amazingly observant of his physical surroundings.  He can tell where we’re going based on the turns I take or the scenery along the route.  If I tell him that we’re going somewhere different —and I may have to repeat it many times to reinforce the message as I drive— Nik is, generally, ok with it.  Today’s destination —the orchard for the ice cream and petting zoo —took us right past the turn for the park.

Can you see where this is going?

Right. So here’s our happy-go-lucky boy —already wound tighter than a top from the shoe incident— thinking he’s going to sit and eat ice cream and then go to the park.  By the time we got to the orchard, not only had we not eaten ice cream but we’d driven past the park!  Poor Nik  was experiencing such tremendous cognitive dissonance that he simply could not function.  I’m not using hyperbole for effect, either.  By the time we returned home this morning, though he was happy and clapping when we pulled in the driveway, Nik was completely motionless and silent when we opened the car door.  It was as if he simply checked out for a moment to re-calibrate.

This afternoon, armed with those realizations, and the knowledge that Nik doesn’t know what the new place —the orchard— is, we realized that we had to give him only one part of the sequence at a time.  Otherwise, we risked the likelihood that Nik would fixate on “going to the park” and block out the rest because he couldn’t visualize it.  We also decided to try something that I’ve been meaning to try for a while —a rudimentary picture schedule to help Nik know where we are going in the car and why we are not going the way he expects us to go.  (Side note: Nik doesn’t seem to have this trouble with changing activities at home or at therapy; it’s only when we are driving places that he gets so rigidly attached to his expectations.)

I printed out two pictures to take with us.  We gave Nik the first one —a full size picture of an ice cream cone— before we got in the car and explained to him that we were going to “a farm” to get ice cream.  Oddly enough, though I don’t think we’ve ever taken him to a farm, Nik seemed to understand that concept.   Maybe it was simply because I named something that he understands as an actual place or, at the very least, a place that is not home?  I really don’t know.

As we drove along the exact same route we took this morning, I sang silly songs about eating ice cream and going to the farm for yummy ice cream.  Nik even got into the spirit when I asked him to show me how he eats an ice cream cone by, well, eating the ice cream cone picture!

eating pic of ice cream

Nik never once whined nor got upset the entire drive.  As soon as we arrived, he let Niksdad put him up on his shoulders and we made a beeline for the ice cream.  Nik’s reaction was all the proof we needed that we had done the right thing:

20090801_Peach Festival 2

After Nik downed an entire cone —and attempted to eat a few twigs, too —we asked if he wanted to go to the park.  He wasn’t quite clear about that so I asked if he was ready to go in the car.  That got a clear affirmative so we went and sat in the car.  Once we were in the car, Niksdad gave him the second picture —a picture of a playground similar to that at the park —and asked if he wanted to go there.  The light bulb went on and our little dude was on board.

The rest, as they say, is history.

20090801_Peach Festival 3

20090801_Peach Festival 4

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It’s all too easy to wrap myself up in my cocoon of life with my little family and my warm-fuzzy relationships with my blogging and other friends. So easy to revel in the progress my child is making as he learns to eat, to walk, run, play, communicate —and to love and be nurtured in a supportive environment.

Every once in a while, I am slapped back into the harsh, cruel reality of what life can be like for so many people with autism and other neurological or developmental delays and disabilities. The truth is that people with any sort of developmental disabilities have their rights denied or violated in countless ways; access to fighting for their legal rights is often far more restricted than the general public realizes. Those that are unable to speak for themselves or who have no one to speak up on their behalf often find themselves in horrifically unspeakable circumstances.

I can fool myself with thinking that “this would never happen to Nik or [insert name of your adorable child here]“ but If something were to happen to Niksdad and I tomorrow, Nik could well find himself placed in an untenable situation. In fact, if something were to happen to Nikolas,he could be removed from our custody and placed into a situation like that of Frankie Macias.


Frankie Macias has been institutionalized at the New Lisbon Developmental Center since 1994. He was sent there by New Jersey’s Division of Developmental Disabilities on a temporary, “emergency” basis to wait until funding for an appropriate community placement became available. He is still waiting.

In his 14 years at New Lisbon, Frankie has experienced numerous physical assaults, sexual assaults, and, for quite some time, the near daily use of 4-point mechanical and chemical restraints. He was denied his right to vote. When his sister asked him to walk her down the aisle at her wedding, he was not permitted to attend. This year, his request to spend Thanksgiving with his family was denied.

In 1998, Frankie reported that staff were placing residents of his cottage in mechanical restraints and leaving them unattended with another resident, who would then beat them up. Fearing for his own safety, Frankie asked the CEO to install hidden cameras. Three years later, in 2001, a resident was found dead in this same cottage. He had been strangled. Earlier that year, another New Lisbon resident was found, beaten and bloody, under his bed. He never regained consciousness. Frankie said to his mother, “Mom, if I die, please don’t let them bury me at New Lisbon.”

In the mildest of terms, New Lisbon is not a nice place to live. In 2001, the federal government agreed, and New Lisbon was decertified following an inspection by the Centers for Medicare and Medicaid. The facility was re-certified in 2002, however, that same year, the U.S. Department of Justice investigated allegations of violence and substandard conditions at New Lisbon and, as a result of its findings, sued the State of NJ for violations of the Civil Rights of Institutionalized Persons Act.

This is the place DDD sent Frankie to wait.

Now, a wonderful organization has offered to provide Frankie with a home of his own and the community-based services DDD promised him over a decade ago. After 14 years of waiting, Frankie could be home for the holidays…

If only DDD would let him go.

Instead, the Division of Developmental Disabilities continues to demand revision after revision of the service plan submitted for Frankie. Meanwhile, back at New Lisbon, his condition continues to deteriorate.

We are asking Governor Corzine to put an end to DDD’s 14-year emergency and Free Frankie NOW!

Please take consider Frankie’s story —it is far from being an exception —and sign the petition. I hope you will pass this along to everyone you know who cares anything at all about basic human rights, decency, and compassion.

As we approach the Thanksgiving holiday next week, I hope you will give thanks for your freedoms and your ability to advocate for yourself or for your loved ones. It should not be taken for granted.

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U.S. Department of Justice finding letter, dated April 8, 2003, to Governor James McGreevey can be viewed here or read in summary form on the site of AspergersExpress here.

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Thank you to everyone who signed the petition and helped spread the word on the grossly offensive billboards created by PETA.

Due to the overwhelming negative response, the billboard has been removed…by the advertiser!
Again, Ari Ne’eman articulates it more clearly so I’ll let him do it for me:
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Hello everyone,

I am happy to announce that PETA’s recent, “Got Autism?” billboard has been removed by the advertising company hosting it. The billboard misinformed the public about the autism spectrum by falsely implying that milk consumption was the cause of autism. Such advertising contributes to a state of public hysteria about the autism spectrum, fueling the fear and resulting prejudice that marginalizes us from society at large. It is unacceptable for autistic people, our families and supporters to be used as instruments in PETA’s political agenda or that of any other unscrupulous interest group. Our community came together to communicate the need for a swift withdrawal of this ill-informed piece of advertising, and I’m pleased to say that were able to achieve a swift result. That we were able to accomplish this so quickly and effectively speaks well for the autistic community and the cross-disability rights movement. Thank you all for your support.

If you’d still like to indicate to PETA the need to avoid exploiting the autistic community in its future advertising, you can write to them at info@peta.org as well as call them at 757-622-7382 and dial 0. You can also sign our petition on this topic, further indicating to PETA and the world that it does not pay to try to attack and exploit the autistic and cross-disability communities.

Incidents like this show the need for a strong and activist autistic self-advocacy movement, working closely with the broader disability rights community. By uniting on issues like this one, we can work to address the persistent biases that pervades the public discourse about autism in specific and disability in general. As we speak, the blind community is uniting against false and offensive depictions of their community in the new movie, “Blindness”. Over the last few months, disability rights activists from all parts of the community came together to fight against outdated and damaging portrayals of people with intellectual disabilities in the movie, “Tropic Thunder”. Less than a year ago, the disability community united behind our successful effort to stop the NYU Child Study Center’s “Ransom Notes” ad campaign, which portrayed children with disabilities as kidnap victims.

Like any other community, we have the right to be treated with respect, in media, in service-delivery and in all aspects of society. While responses to offensive depictions of disability in popular culture are not the only battle in the broader struggle for equity, inclusion, quality of life and opportunity for all people with disabilities, this issue must remain an important priority. Culture helps to shape the reality we live in. By challenging the exploitative and offensive public discourse on disability we find today, we can advance a broader agenda for disability rights. The disability community is on the march and we will not be stopped. Thank you once again for your effective action on this issue. I look forward to working with all of you once again in the future. Remember, “Nothing About Us, Without Us!”

Regards,

Ari Ne’eman
President
The Autistic Self Advocacy Network
1660 L Street, NW, Suite 700
Washington, DC 20036
http://www.autisticadvocacy.org/732.763.5530

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…From Cheese to Milk.

The well-intentioned folks over at PETA are at it again. First it was a campaign to replace cow’s milk in ice cream with human milk. Folks, I couldn’t possibly make this crap up.

Now, in another udderly ridiculous claim, they are touting that there is a definitive link between autism and consumption of cow’s milk. Again, not making this stuff up, people!

Here’s a copy of a communication received today from Ari Ne’eman, President of the Autistic Self Advocacy Network. He says it better than I could. Well, okay, maybe not better but definitely more succinctly! (wink)
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“Recently, the organization People for the Ethical Treatment of Animals (PETA) launched a new ad campaign entitled, “Got Autism?”, misleadingly implying that the consumption of milk is associated with the cause of the autism spectrum. PETA is misinforming the public about autism and thus joining a long line of unscrupulous groups that have sought to try and spread fear about autism as a means of pushing their particular agendas.

Attempts such as these treat individuals with disabilities as pawns in the efforts of other constituencies. By refusing to acknowledge the right of the autistic community to be referred to with respect instead of as the focus of public hysteria, PETA contributes to a state of affairs which marginalizes the disability community. People with disabilities, our families and our supporters deserve better than the exploitation and fear-mongering that comes about when disability is used as a means of scaring the general populace. For millions across the globe, the answer to PETA’s “Got Autism?” question is an unequivocal yes. That should not spell the end of our lives or prevent us from being fully included throughout society. By exploiting us, PETA becomes a culprit in the social forces that marginalize people with disabilities and lead to the discrimination and prejudice that truly disable us.

Let PETA know how you feel about its choice to exploit autistic people by writing to them at info@peta.org or call them at 757-622-7382 and dial 0. In addition, we encourage you to express your support for these ads’ swift withdrawal by signing this online petition.”

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I hope you’ll consider adding your voice and pass this along, too.

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Fill your bowl to the brim and it will spill.
Keep sharpening your knife and it will blunt.
~Lao Tzu

Step one — make room:

Dear People-I-Have-Come-to-Honor-and-Respect,

I want to let you all know that I will no longer be participating with
the [names of groups here].

As you know, circumstances change; taking care of my family is a top priority. When I undertook each of those commitments my family was in a very different place; Nik was in school and Niksdad was just embarking upon his new career path. Now, I am home schooling Nik and coordinating his many therapies —to which he is responding very well —and Niksdad’s school and work schedule are quite demanding. He begins his last year of the RN program on August 25th and will be in a combination of classes and clinical rotations Monday through Friday (both days and evenings) in addition to his LPN job on weekends.

As Nik gets more and more active and has significant developmental bursts, I need to create some more specific structure for him so that he continues to progress; he is not the sort of child one can expect to sit and play quietly in a conference room while Mommy is in a meeting down the hall. Our childcare experiment back in April was what helped me to realize that Nik needs something different right now. I do think that some sort of on-site childcare may work for some families and should be offered as an option to encourage more parents to participate.

I did not make this decision lightly; I believe in the work we are doing and I hate to feel I amletting other people down. The truth of the matter, though, is that I would be letting my family down if I made any other choice right now. I firmly believe that advocacy must begin at home and there is much that demands my attention here now; both of my guys need my full support to be successful.

Thank you for all the opportunities you have provided for me to learn and grow as a leader, and to contribute to the success of children and families in our state.

I wish you all the very best,

Niksmom

Step Two — Breathe…

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Image courtesy of Richard Winskill
Jennifer Graf Groneberg has a beautiful post today at Parent Dish about ice cream —and ripples. It got me thinking this morning about what effect I have on the world around me —both in my own closely circumscribed world of family and in a larger, more global or community sense.

It’s so easy to go through the motions of each day, one moment at a time, without fitting the bits and pieces together —never seeing the forest for the trees. Days start to run together and events repeat with a numbing regularity which dulls my senses. Sometimes, in order to see ourselves more clearly, we have to step outside our daily routines; take the road less traveled —or at least the left turn instead of the right —and things change.

If we are lucky, we can see the change we are being and creating as we go. If we are, perhaps, not as observant but equally lucky, we have friends who are there to help us not only find the forest but navigate our way through it. That has been my experience in this past year of blogging. Some days —weeks really— I have been moving so fast and furiously that I’ve missed the beauty around me —until some kind blogging friend has reached out and touched my heart, reminding me that my absence is felt; there is a hole which no one else can fill.

Tuesday, the day of my high muckety muck committee meeting, was also my blogging anniversary. I was so busy —and have been all week —that I completely missed it! But, you know, there’s a funny thing here because —without the support, encouragement, wisdom, humor, and self-discovery I have shared with my readers and blogging friends over this past year —I would never have had any sense that my absence was felt at those committee meetings that I missed; that my one voice does make a difference. I would never have spoken up and had my needs —and Nik’s—met with such grace and ease.

Nor would I have been so beautifully reminded of the gifts I bring when I share my son with others —both online and in person. I know my son is magnificent and special; what parent doesn’t think that about their own child? But seeing my child through others’ eyes has made me a more conscious parent, more willing to recognize and, when appropriate, place my son’s needs ahead of my own desires and ego. I feel the weight of the responsibility a little heavier than I would like on many days but I shoulder the load with love because I know I am not alone in the journey.

The meeting itself went well; perhaps I will write more about that another time. The child care, depending on your perspective, was pretty good. There are things I learned that I will do differently next time to make sure Nik has a bit more guided activity for part of the time. Also, I realized that people do not fully understand perseveration until they experience it first hand. The unfortunate effects of allowing certain perseverations to continue for a long time have lasted long past Tuesday afternoon. But I can see that it is up to me to guide those who care for my son as well as to find new and creative ways to distract Nik and keep him more fully occupied in the days which follow.

None the less, I know that Nik was cared for by a loving and conscientious friend; S was not afraid of Nik’s high energy and insatiable —bordering on dangerous— curiosity. She’s even willing to do it again for the next meeting in July! S sent me a beautiful email after she got home; she wrote —

I so loved spending time with Nik. I want you to know, that I was able to connect with how awesome of a kid he is!
I know you already know!

Niksmom, ALWAYS keep the hope in your heart going strong.
That one-on-one time with him was amazing. I watched how he
problem-solved. I watched how he NEVER got discouraged when attempting something. I watched him enjoy his now -
which so many of us adults can never do. I watched his compassion
as he wanted to share his apple with me, just like his Mommy – I was honored.

Niksmom, I loved being with your blessing. Because guess what,
he is a blessing to me too. A reminder of WHY WE DO THIS!
Our precious, precious children.

When is the next ICC meeting? You have me for as long
as you can use me!

With love for you my friend,

Because of S’s generosity and the ripples she created by tossing her pebble into my tiny pond, I was able to do some work on an issue which is really important to me —helping families understand and successfully navigate the transition from the early intervention program to the schools. I am now heading a subcommittee which is going to create a family guide to be used statewide by the birth-to-three program and the parent information resource center. Ironically, our horrible experience with Nik’s transition (and subsequently, his bad school experience) puts me in a really good position to look at this issue from the standpoint of hindsight about what I wish we had known going in and how I wish things had been handled; I also have one of the more medically involved children that they have dealt with in a long time. There are other parents and some service professionals on the subcommittee, too, who have a variety of unique perspectives to share. I am looking forward to the process.

One day I took a pebble called blogging and tossed it into my little pond; my pond was forever changed. Then I took some pebbles from my own garden and dropped them into several other ponds. The ripples are still moving outward and I cannot see how far they extend, but I know that I am changed yet again.

Thank you for being a part of my journey, my growth, and my change. Thank you for the ripples you’ve made in my heart and in my life.

Photo courtesy of http://www.treesforlife.org.uk/forest/photo/rain.html

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Let me be perfectly blunt. I may do that with you, may I not? I mean, if you are here reading my blog then you have some sense of me by now, I hope.

I HATE choosing sides. I can’t help it; I’m a true Libran, always striving for balance and even-handedness even in my zealous passions. I am also a reformed journalist. My training dictates that I try to see all sides of an issue and leave my opinion out of things. Because, really, in the end, your own opinion has to matter more to you than mine, right? And so I feel about the ongoing debate about whether vaccines cause autism.

If I had to come down on one side or another, I would have to say that I do not believe vaccines cause autism. Certainly, if that were the case the entire vaccinated civilization as we know it would all be autistic. Hell, maybe we are and we just don’t recognize it? I mean no disrespect to anyone with my flippancy, truly. But I just don’t think it’s the sole mitigating factor in what made my son autistic.

I think it may, in fact, be possible that vaccines and a number of other necessary interventions used during my son’s early life have all had an impact on how he perceives and functions in our environment. But I think that would be the case for any child born three months prematurely, weighing a mere nineteen ounces, and requiring multiple life-saving surgeries within the first four months of life. Vaccinated or not, that child would face significant hurdles in their young life.

However, in the interest of fairness —and pandering to the pull of my Libran traits —I understand those people who are convinced that vaccines caused their child’s autism. I’m not saying that I think they are right; let me be very clear. What I am saying is that I understand and respect their right and privilege to feel and think what they do.

I look at this debate much like I look at religion —specifically, the belief in God. Despite scientific evidence to the contrary —Darwinism, Big Bang theories, etcetera—millions of people believe with all their heart and soul that God created the Universe and all its inhabitants. Me? I think it’s something of a mixed bag; that science and religion are not that neatly separated despite man’s fervent need to make them so. It is about faith. Do you put your faith in science or in the things that seem to make sense even if you can’t explain them or back them up with anything besides a feeling? It is up to the individual to decide. No matter what scientific evidence one presents to a person of deep religious faith, they will not be swayed from their stance. And vice versa.

In either case, though, one’s beliefs do not give them the right to force them on others. And that seems to be happening a lot right now —especially from people and organizations who are utterly convinced that vaccines are the cause of autism. Despite overwhelming scientific evidence to the contrary, there are those who would rather cry conspiracy and cover up than look in other directions. There are those who espouse any number of non-traditional treatments —medical and otherwise— and claim to have cured their children. Maybe they have in their own minds. Or maybe those children weren’t truly autistic but subject to something else which can mimic some autistic characteristics? I’m not saying they were or weren’t. I’m saying I don’t know. There’s not enough evidence to convince me. But their voices are loud; they want to drown out any voice that doesn’t sing the same tune.

Last I checked, this was still a democratic nation with freedom of speech. Whether or not you like what’s being said is not necessarily as important as the fact that you have an opportunity to hear all the messages. So, in the interest of fair and even-handed coverage, I offer you this letter from Susan Stevens Martin of the American Academy of Pediatrics. Please read the following and then decide for yourself where you stand, how you feel, and what part you want to take in this ongoing issue. ‘Cause it’s not going away anytime soon, folks!

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(Text of Susan Stevens Martin’s letter begins here.)

Hello,

As part of our ongoing response to media stories regarding autism and vaccines, the AAP communications department is compiling a list of parents who support the AAP and are available for interviews. We are looking for two types of parents who could serve as spokespersons:

Parents of children with autism spectrum disorders who support immunization and who do not believe there is any link between their child’s vaccines and his or her autism.

Parents of children who suffered a vaccine-preventable illness. This could be a parent who declined immunization, whose child became ill before a vaccine was available, or whose child was ineligible for immunization.

We are asking for your help identifying parents who would be good spokespersons. They do not need to be expert public speakers. They just need to be open with their story and interested in speaking out on the issue. We will contact candidates in advance to conduct pre-interviews, to offer guidance on talking to reporters and to obtain a signed waiver giving us permission to release their name.

If a parent were placed on our list, we would offer their name and contact information to select media. We hope to build a list of parents from a wide range of geographical areas.

As the Jenny McCarthy and “Eli Stone” stories illustrate, this issue is likely to recur in the national and local media. The AAP is committed to doing all we can to counter such erroneous reports with factual information supported by scientific evidence and AAP recommendations.

The anti-vaccine groups often have emotional family stories on their side. The ability to offer a reporter an interview with a similarly compelling parent who is sympathetic to the AAP’s goals is a powerful tool for our media relations program.

Please contact me if you have any questions or to suggest a parent to interview.

Thank you,
Susan Stevens Martin
Director, Division of Media Relations
American Academy of Pediatrics
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If you are interested in participating, please contact Susan Stevens Martin directly at ssmartin@aap.org.

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ETA: If you would like to read posts on this topic —from individuals who are far more articulate and erudite than I am —please check out the Autism Hub web site. ON this site you will also find numerous blogs written by autistic individuals, family members, and professionals; they cover a broad spectrum (sorry for the bad pun!). You’ll find a little something for everyone there.

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