Dear Community, Dear Friends,  

As a parent of a child with a cognitive disability as well as a relative to another, I consider the word "retard" very offensive. As a child, my mother was quick to educate us on how offensive this is to our family and others.  

Today it is a word that is tossed around thoughtlessly, few people even understanding the true meaning of the word.  It is through education that we can stop this from happening.    

I'm forwarding information to you for you to share with everyone you know regarding a new movie called "Tropic Thunder" that belittles people with cognitive disabilities.   Please do your part to help put a stop to discrimination and abuse of people with disabilities. Boycotting this movie offers a great opportunity to share information about individuals that have developmental abilities and to put a stop to the "R" word

Christine Garton

FSN of the Sandhills

Program Coordinator

Mother of a child with a disability

910-246-8059 ext.25  

 --- On Thu, 8/14/08, Irene Zipper wrote:

From: Irene Zipper
Subject: Re: [fsn_programs] FW: The Arc of the United States calls for national boycott of film Tropic Thunder
To: "FSN Affiliated Programs Mailing List"
Date: Thursday, August 14, 2008, 8:49 AM

 

Parent to Parent USA is among the many groups that has been involved in discussions with Dreamworks, and FSN of NC staff have reviewed a draft of a letter that is to be published in the New York Times.  One major concern is that this film not only makes use of an offensive term, but denies the valuable contributions that individuals with disabilities make to our society.  One of the discussions has been about whether letters should be coming from advocacy organizations or from individuals with disabilities themselves.  I think they should come from both, and it is important to emphasize the valuable contributions that all individuals are able to make to the society.   This movie seems to undermine that message, unfortunately  

Irene Nathan Zipper, MSW, PhD
Director
Family Support Network of North Carolina
University of North Carolina
CB #7340
Chapel Hill, NC 27599-7340
(919) 966-6395
http://www.fsnnc.org/

    -----Original Message-----
From: Sue Price [mailto:SuePrice@vnet.net]

Subject: The Arc of the United States calls for national boycott of film Tropic Thunder

Dear Friends,  

I am writing this in response to several phone calls and emails we received about the movie Tropic Thunder, which hits the theaters today. Here is some information we received from The Arc of the United States which describes the movie and it's impact on individuals with intellectual disabilities.

Background: Tropic Thunder is an action/adventure/comedy scheduled for nationwide release on August 13 and promises to be one of the blockbusters of the summer. DreamWorks is the film's producer and Paramount is its distributor. 

The film features popular actors Ben Stiller, Robert Downey Jr. and Jack Black as self-absorbed actors filming a big-budget war movie on location. Through a series of freak occurrences, they are forced to become the soldiers they are portraying.

Stiller plays Tugg Speedman, a fading action star who earlier failed in his bid for an Oscar as "Simple Jack," a man with an intellectual disability. "Simple Jack" is featured as a film-within-a-film, with Stiller sporting a classic institutional bowl haircut and bad teeth. The film within-a-film's slogan is "What he doesn't have in his head, he makes up for in his heart." A satirical plot synopsis quotes a critic as saying that Speedman's Jack was "one of the most retarded performances in cinema history."

Status: A small number of disability advocates was able to screen the film on Friday, August 8.  Their assessment of the film was that it was far worse than anything they could have anticipated.  According to David Tolleson, the Executive Director of the National Down Syndrome Congress who attended the screening, "it provides real ammunition for cruelty" especially for the film's target audience of adolescent males.  "Not only is the Simple Jack character highly central to the film's plot, it is portrayed in the most demeaning way," according to Tolleson.  In perhaps the single most offensive scene in the film, Matthew McConaughey, who plays a Hollywood agent, speaks to the film's main character who wants to adopt a child.  "Well, at least you still have a choice.  I'm stuck with mine," states McConaughey while pointing to a photograph of his teenage son who appears to have an intellectual disability. There has been mounting outrage from the disability community as the film's content is gradually becoming known.  For excellent coverage of the issue, see http://capwiz.com/thearc/utr/1/LLMRJBOBNK/JPDRJBQIYG/2272335441 and related posts. Hundreds of comments have been posted on the blog expressing outrage about the movie.

Representatives of a number of national disability organizations, including The Arc's Executive Director Peter V. Berns attended a screening of the movie and state that it is even worse than they imagined. As a result, Arcs across the country, in collaboration with other disability groups, are calling for a national boycott of the file.

What can you do? Join us in boycotting this offensive film. Forward this email to your colleagues, friends and family asking for their support. All of us have friends and relatives spread out across this country. Our voice will be more powerful if we join together. Consider sending a letter to Dream Works expressing your outrage at the hurtful language used in the movie. (I have attached a sample letter to use if you wish)  Please consider that this is also a great opportunity for us to educate our community about People First Language! As educators, families and professional in the field, we all how damaging and hurtful this derogatory language is. Now is our chance to speak about this important issues to our children, friends and neighbors. We have an opportunity to make a real difference here, and I hope we can count on you to do whatever you can to help. Thanks so much.  

Sue Price
Executive Director
The Arc of Cabarrus County, Inc.
P. O. Box 1367
Concord, NC 28026-1367
704-788-1616  

"Never doubt that a small group of thoughtful citizens can change the world. Indeed, it is the only thing that ever has." -Margaret Mead, Cultural Anthropologist and Author

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With all of the hustle and bustle of planning this event, I forgot to post it HERE!!!

 Do you have or know of a child with a disability?

Then tell them about this NEW program in the Sandhills Area.

S.A.N.D

See Ability Not Disability

Athletic Program for Individuals with Disabilities

What is S.A.N.D?

Those with cognitive or physical impairments face many barriers when it comes to participating in competitive sports. SAND is an athletic program created to give children and adults with disabilities the opportunity to experience a sport many may not have the opportunity to participate in.

Because SAND is brand NEW to this area, this will be an evolving program- learning as we go. Since there will be a wide range of disabilities as well as ages (4-adult), we will be able to develop this program more and more as time goes on. It is through PARENT Participation, that this program will become what we envision in the future.

SAND will concentrate on one sport, one season at a time. The chosen sport for this Spring/Summer season will be T-Ball/Baseball. Based on ability levels, SAND participants will learn the skills necessary to play the sport. Each season will end with a FUN filled game and family picnic.

To learn more, Register or Volunteer for this exciting NEW program Please click here: www.fsnsandhills.info

-Christine Garton

FSN Sandhills Program Coordinator

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We say it all the time to our kids, to our parents and to each other. "good night, I love you", "see you later, I love you." Sometimes we say it to our friends. I remember a funny story Brian told me. As he was on the phone talking to his friend's wife, their conversation came to an end and she told him "ok I love you" (forgetting he was not her husband), awkward! My point is that it is three small words that, once worked into your life, become habit words.

Since autistic children tend to have speech delays, we mothers await anxiously for their first words. For some children it comes early, some much later in life and some mothers may never hear their children utter any words. For us, Scott was 5 years old when he began to talk. Once speech has developed, the second thing we anxiously await to hear are those three little words, "I love you."

Scott can say it. I remember how thrilled I was when he told me "I love you." It was not long before I realized that he did not understand what he was saying. To him, those words had no meaning. They had become habit words. It became his standard response when we told him "I love you." But that was ok! I had waited so long to hear him say those words I would have settled for anything that sounded close to those words. That was a year ago.

Today that all changed.

He was home sick today with what a lot of autistic children have frequently, another ear infection. The poor guy was in so much pain. But no matter how much he stuck his finger in his ear and no matter how much he cried, he refused to take his medication (another thing that he does not understand the meaning of). He does not understand that if he takes these purple pills, his 104 fever will feel better, or that if he takes these white pills his "OWIE" in his ear will go away.

After trying, unsuccessfully, to convince him to take those purple and white pills, I gave up and put a Barney DVD on for what I was hoping to be 5 minutes of peace. After about 30 minutes Scott came to me, pushed my arms down and said with such conviction "I love you mommy." And then sealed the deal with a kiss!

It was in that moment that I knew. He understands what those words mean. He understands it in his heart. No more are those "habit" words for him. From now on I know when I tell him "I love you" and he responds the same, I now know he means it!

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I wanted to post today about the acronym ADD/ADHD.

Since I am in the business of speaking with and working with families who have children with special needs, I see it far to often. You have seen it and may have even done it. A parent says that their chid has ADHD and eyes roll. WHY?

Many people, especialy those with children, feel that many parents use that acronym as an excuse. An excuse to put their kids on drugs because they can't control them. Some may have. But for the most part, not so true. Because of the chastizing that the general public displays about ADHD, many parents feel reluctant to say that their child has it, closing themselves off from needed support.

We have 3 children, 2 of which have a special need.

Our second child has Autism, diagnosed 4 years ago. He is moderately autistic, borderline severe. At almost 8 years old he is cognitively 2 or 3. However he is very smart and now has developed a sense of humor. He makes us laugh everyday. He has a severe speech delay and his potty training is coming along well. He walks on his toes almost exclusively and he chews everything. He goes through a lot of shirts. But aside from those autism things, for us his biggest issue is tantrums. Coming out of the blue and lasting for long peroids of time, until exhaustion. So you'd think I have a good understanding about "special needs."

Our oldest, 12 in June,  has always been difficult, moody and never thought about anything before she acted or spoke. I was having to keep on her daily about everything. I describe her brain as a hamster on a wheel. Constantly going, thinking, doing. She's a good kid. Very thoughtful of others. But all of her actions were holding her back. Her grades were slipping and the teachers were nearly fed up with her.

Still, even then, I was one of those judgemental people. I too rolled my eyes. But something was going on. It was time time that open my mind and look into the possibilites that was a reason.

She was diagnosed with ADD last year. I actually felt relieved to know that there was a reason why she would spend 10 minutes in the bathroom "brushing her teeth", only to find that she had not even turned the water on yet. Or why she had forgotten that she knew how to spell words she learned the year before.  

Yes she is on a medication. I am thankful for that because it has helped her tremendously. She is now an honor student. For her, the medication as given her the ability to think clearly, allowing herself to use her common sense. I am very proud of all of the hard work she has done!

I say ADD is a special need.  Some may not believe so because she is not in a wheel chair or because she is in an age appropriate class and it certainly is not autism. I am here to tell you that it is a special need. We spend as much time and energy with her as we do my autistic child. We still have to keep on her about getting her homework done or "yes you have wear your coat because it is 29 degrees outside."

Had I kept my mind closed to that diagnosis, my daughter for sure would not be doing as well as she is today.

I hope that I have given those who roll their eyes, another perspective. Please do not be so quick to judge, and ask if there is anything that you can do to help.

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I have usually been able to joke about some of the things that a child with Autism gets himself into. Read some of my other blogs for more stories. I say that humor is what gets us through each situation. However this morning humor does not apply.

We woke up at 6am to prepare for our trip to my mother's house. As I finished my last cup of coffee, I walked into the kitchen to put my mug in the sink I noticed an odd smell. "Brian, I smell something burning." "Me to it smells like plastic" he said. We checked all over the kitchen and did not find anything. "SCOTT!"

We have been using our fireplace to help cut back on our heating bill. It has by at least half. It heats the house up very nicely, and I love the smell of the fire and hearing the crackling of the wood burning. We roast marshmallows and sometimes even enjoy a hotdog every now and then. Love it!

The fireplace heats every room except for Scott's. Because of his autism, we have to keep his door locked during the night. Scott wakes up much earlier than we do (between 4 and 5 am), so to keep him safe we keep his door locked from the outside. If we did not he would wander all over the house and even attempt to get outside. Keeping his door locked is imperative! Since the heat from the fireplace is not able to reach his room, we installed a small space heater. I say installed because that is what I had to do. I could not just put it in his room and tell him "do not touch." I wish! To keep Scott from messing with it required lots of bolts and screws, as well as a crate covering it to keep him from playing with it. That was a month ago. It has been doing a great job keeping his room toasty.

So as I ran down the hall to open his door, the smell was more intense. I opened Scott's door and yelled for Brian. The smoke was thick and I could barely see Scott on the floor in front of the space heater. Scott looks up at me and says "I fire." After the few seconds it took for the smoke to fill the hallway and clear up his room, I could see that indeed the space heater had caught on fire. The unit was melted and scorched and burn marks now scar his hardwood floor.

Indeed "Our Christmas Miracle"- Scott is fine, not a burn mark on him. The only damage done was to his floor and the headaches we all had from the smell.

I wish I could say that it was due to a faulty unit. But I am comfortable saying that Scott was the cause. I believe that when he woke up at 5am he got bored. He started to play with the space heater and then saw the small vents. Vents spaced enough to fit something in. This is what I believed caused the fire.

Unfortunately I know that this will not be last of our Autism Adventures. As Scott keeps getting older and stronger, he is also growing smarter and quicker. He is thinking about things that I hope I will be able to think of and head him off on.

So keep checking Sandhills Kids for more about our Autism Adventures.

-Christine

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Parenting children is hard enough already and then you throw in a child with autism. The rules of parenting have changed and you soon find that you  will have to throw out all of those "Parenting" books. They just don't apply. What would child guru Dr. Spock say?

AUTISM: It is a word that so easily sums up this weekend!

YouTube is Scott's newest obsession, seems harmless enough. He enjoys watching Thomas the Train, rockets blasting off, car engines revving and now in the spirit of the holidays-Christmas light displays. It is amazing to me the things that people will video tape all in the name of entertainment. How he came across his most recent video segment I do not know-toilets flushing.

Scott has always had a thing with toilets. Since he was old enough to reach the handle he has always flushed. As a smaller child, we could keep him out with a baby gate. Not long after he would push them over, so we upgraded to the knob protectors. Then all of his physical therapy paid off and soon he was strong enough to squeeze and turn the knob.  So our next upgrade was to lock the knob from the inside and use a coat hanger to open it. Hi-tech huh? Shortly after his flushing tapered off and we were able to open the doors again. That is until now, with his YouTube obsession.

So he is ready for his computer time. He pushes the office chair as far away from him as he can get it-as to not get in the way of his stimming. He stands in front of the computer, he never sits for anything and soon he is clicking that little blue "E." He's online! He remembers that YouTube starts with Y, so he types Y in the address bar and up pops the link. It's a good thing our computer remembers everything we type. So now he is in and then he remembers how he found the toilets, though I still do not know myself. There he goes-getting his "high." How do I know? When Scott is getting that sensory input that makes him happy inside he flapps his hands, stands on his tippy toes (makes me cringe), and drools like a leaky faucet! This is called stimming. I can just imagine how tingly he must be feeling in his gut. While his computer toilet flushing obsession seems harmless, the watching quickly developed into an action. 

Triggered by this weekend's events, we have now upgraded our bathroom door locking system once again, key entry only.

Friday evening dad took Scott potty. Because of his extreme "habit" he must be supervised, watched like a hawk. While dad (the hawk) turns his back to get some toilet paper, Scott quickly flushes the toilet. The hawk turns back around and discovers Scott's underwear are now missing! "Scott where's your undies?" "I flushing!" replies Scott grinning from ear to ear.

Friday night our tub began to gurgle with each flush. Saturday night neither one of the toilets would empty. Today I have a plumber coming over to clear our lines. Well, at least I think I  know where all of his socks have disappeared to.

Parenting on a Whole New Level!

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 Sports Program for Children and Adults with Disabilities

Family Support Network of the Sandhills and Moore County Parks & Recreation Department are working together to bring a new program to families in Moore County .  

As we leap forward into the planning process of this exciting new effort, we are in search of families to participate.  We are currently seeking your help in spreading the word about this developing program.  

Who is eligible? Any child who has a disability and would like to participate in a county wide sports program.

How old does my child have to be? We are currently seeking the needs of all ages, 4 through Adult.

What can I do to help the program? You can help us by volunteering your time as a member of the planning committee. We are also seeking adult volunteers to assist children on the field as well as coaches to help us pull it together.  

There are 2 ways to submit information;    

1.      Online: visit FSN Sandhills website, Click on the "Sports Program Survey" Link: www.fsnsandhills.info

2.   Mail: Print out the internet form by clicking the above link, complete the questions and mail to FSN Sandhills.

Please be sure to provide the printed document for families you know who may not have Internet access.  

Thank you for your help in networking this information!  

 For more information on support and resources for children with special needs please contact,

Christine Garton  910-692-6123  ext.25

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After being at home with my angels for 2 months, I am so thankful that we have only 1 week to go!!

School is starting I am going to celebrate!

 I have tried to get out of the house; take the kids grocery shopping, out for lunch and even to the park. None of that worked. Not even in our own backyard! Last Friday we took a picnic lunch to Castle park (very nice by the way). Not even that made him happy. He just wandered around, not interested in playing at all. Never has been.

Scott is very happy in his own little house in his own little room. He is very content playing computer games or the playstation and watching movies.

If I try and get him out of the house, he throws a temper tantrum. So we just stay put. It is much better than enduring, sometimes 2 hours, one of his tantrums.

So when Monday comes and the kids are on the bus, I will celebrate by taking my self out for breakfast, getting my nails done and then I will come home and take a nap. 

I can't wait!!

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Did you know that I am also the program coordinator for Family Support Network of the Sandhills?  www.fsnsandhills.info

An organization that I am proud to be a part of! Check out the link and see what I can offer you and your family!

We got home just a few hours ago. So now I am decompressing from our long weekend and telling you about it!

Scott's doctor was worried about his growth rate. Scott is and has always been on the small side. He is below the average BMI for his height. He should be between 18 and 22. Scott is at a BMI of 13.

She became even more worried when she noticed in his chart (in May) that he had not gained a pound of weight in the last 6 months. Not even 1 single ounce! She called it "failure to thrive." Definately something any parent should be concerned about. Scott also has acid reflux as well as incredible constipation. Scott has not had a regular bowl movement in the last 2 years! Could you imagine? He has to have a weekly dose of Myralax to help him. So it was a good thing to get the referral.

So she referred us to Chapel Hill. If you have had to go the Chapel Hill for any kind of specialty appointment you know about the waiting lists. When I called to schedule his appointment, the next available was in October. That was 5 months of waiting! To long for him to have to wait.

So I started to call around to all of the Pediatric Gastrointerology Clinics (GI) from here all the way to DC. It was a hard find since those clinics also had to be in the TRICARE network. TRICARE-a whole other post in itself!

So after about 2 days of phone calls, a clinic in DC had the closest available appointment in July. That was great! I was excited to have found an appointment closer than October. My son's health was at risk and could not wait 5 months!

So now to walk you through our day in DC.

I was so nervous about having to drive to Washington DC.  I know about all of the congestion and accidents. Afterall I grew up around there.

According to the expedia.com directions-it was a 1 hour drive. So we left 2 hours before his appointment time. This would allow us time to be stuck in traffic. The directions were very confusing. We were going to Georgetown University Hospital. I had never been there before so I had no directional experience to go from. My sister who commutes there everyday said to be sure to not stop on side streets and to keep our doors locked! It was a good thing that we studied the directions and the map before we left. Had we gone without reviewing-we certainly would have missed the turns. It was one turn right after another. Boom Boom Boom! And then we were in front of the hospital. It was kind of neat to drive right by the Pentagon. I had never been that close before.

So after we found a parking spot in the parking garage we made our way inside the hospital. 

All went well.

The doctor was very nice and very comforting. Scott however did not
want to be examined. No surprise there.

The doctor wants to start with the least evasive and easiest of treatments.

We are going to address the constipation issue first and he thinks
that the rest should correct itself. He thinks that since he has never really been able to dump out his meals after consuming them that this is why he does not have the best appetite. So then he may still feel full and not eat. Makes sense to me!

We are going to have to "clean him out" first. He said we would be
doing it as if he were preparing for a colonoscopy!

He will take this laxitive four doses each day for 2 days in a row.
FUN FUN FUN!! He said it is going to be very messy. So I am going to
wait to do this on Friday so that he will have all weekend to
recover.

After the "cleanout" session he should then be on a regular daily
laxitive, myralax, which will keep him on a regular bowl movement
cycle. Daily which is what he/we should be doing.

Once this is done than the doctor feels that since his colon is
emptied on a regular basis that he will start to eat more which will
then lead to weight gain. If after about a month Scott has still not
gained a sufficient amount of weight, then we will dig deeper into that
issue.

Just one of the many perks to Autism!!

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