The March 21st introduction of the Expanding the Promise for Individuals with Autism Act of 2007 by Senators Clinton and Allard is being praised by the Autism Society of America. This legislation, if passed, would provide approximately $350 million to improve access to comprehensive treatments, interventions, and services for individuals with autism and their families.
The proposed legislation aims to:
- for the first time, convene a task force to evaluate and report on evidence-based biomedical and behavioral treatments and services
- establish State-based demonstration grant programs to provide evidence-based autism treatments, interventions, and services for children and adults
- support protection and advocacy systems to address the needs of individuals with autism and other emerging populations of individuals with disabilities.
- fund expanded access to coordinated multi-agency treatments, interventions, and services to children
- provide supplemental grants for training and technical assistance to service providers and educators and to establish a national center on autism information.
In a recent press release, Easter Seals has announced their plans for National Autism Awareness Month (April). Over the last 20 years, Easter Seals has seen a dramatic increase in the number of children and adults with autism the organization serves. With current autism rates sitting at 1 in 150 children (including 1 in 94 boys); autism is now more prevalent than Down Syndrome, childhood diabetes, and childhood cancers combined.
“Autism Awareness Month provides us with an opportunity to help raise awareness about autism services and treatments available to families –today,” says James E. Williams, Jr., president and chief executive officer,Easter Seals. “Easter Seals is unique as one of the nation’s leading providers of services and support for children and adults living with autism. And, we’re working internationally to deliver personalized treatments for people with autism.”
For more information about Easter Seals, please visit their website.
Tonight’s episode of Larry King Live on CNN will focus on autism and National Autism Awareness Month. Guests included Bill Cosby who is headlining an autism fundraiser in New York in April; singer Toni Braxton whose son has autism; and actor Gary Cole whose daughter has an autism-spectrum disorder. Included in the topics of conversation will be the recently released afflicted rate of 1 in 150 children, up from 1 in 166. Autism affects millions of people, whether directly or indirectly via family members and friends of those with autism spectrum disorders. I am very excited about the awareness that NAAM is bringing!
The Autism Society of America has announced that registration is open for their 38th annual national conference. The conference will be held from July 11 - 14 in Scottsdale, Arizona. Highlights of the conference include six pre-conference workshops, over 110 educational workshops, 120 companies represented at the conference exposition, respite onsite childcare, and many more features!
Early bird registration runs through May 1 at a discounted rate of $225 for full conference registration, $120 for an individual with autism, and $150 for a speaker. For more information please check out the secure online registration form.
“I wanted to do this show because I wanted to show people what autism is.”
Those are the very wise words from 10 year old Max from Cherry Hill, NJ. Max was one of four children featured on Monday night’s episode of TLC’s “My Life As A Child.” Max has a 15 year-old brother, Anthony, who has autism. Max’s segments of the show focused on how living with his brother affects him. He starts off by saying “being autistic, Anthony has weird quirks” then goes on to show some of the things Anthony collects including lawnmowers and light bulbs. Max, Anthony, and their family received a lot of air time and I think they did a really good job showcasing what living with a person with autism could be like but also emphasizing that this is a normal part of life for them.
One part that was particularly touching for me was when the Max asked how the future would be different for him compared to Anthony. His mother’s answers were a reality check for me. For her son Max she wants him to grow up and get married when he’s ready to get married. For Anthony she said that he will probably live with his parents until they are no longer able to care for him and then perhaps he can move into an apartment with others and have a caretaker but that she wants his brother and sister to still involve them in their lives.
This is part of a reality for many parents of children with autism. No one knows what the future holds for your child. If you think about it you don’t know the future for any of your children, whether they have autism or not, but the reality sets in when you think about your child with autism. For my son we have a college savings plan. For my daughter we are going to look into a special-needs trust. We don’t know what level of functioning she will have at age eighteen; she may need assistance or she may be able to go out into the world on her own. These thoughts were really difficult to me in the first few weeks post-diagnosis. I have now come to move on from the “what does the future hold” thoughts and focus on the present. What do I have to be thankful for today.
The Learning Channel (TLC) has a new series entitled “My Life As A Child.” Children are given video cameras and tell their life stories from their point of view with no questions from producers, etc. I’ve seen a few episodes and it is really a great concept. Tonight’s show will focus on four children who are different and deal with teasing because of it. One of the children featured has a sibling with autism. I’ve got my DVR set to record it and will check back in after I watch it with a review. To watch the show yourself, check TLCs show listings for the time and channel in your area.
April is National Autism Awareness Month. National Autism Awareness Month (NAAM)was established in 1972 by the Autism Society of America to help promote awareness about Autism Spectrum Disorders. The Autism Society of America (ASA) is gearing up for this year’s NAAM working with over 200 chapters across the United States.
- Discover Magazine’s April issue will feature a cover story on autism.
- Autism will be featured in articles in Reader’s Digest, People, and Working Mother magazines.
- The ASA has launched a “Hometown Heroes” campaign honoring first responders who help keep our families safe.
- ASA’s Board of Directors will be meeting with members of Congress on March 23, 2007. This meeting is dubbed “A Day On The Hill” and will be used to ask for fiscal year 2008 appropriations.
More information about events sponsored by the national ASA can be found in their press release. In addition to the national efforts, local chapters will also be hosting events. Find your local ASA Chapter.
Between March 18th and May 4th Toys R Us customers will be able to make cash donations and learn more about autism; both online and in the stores. Part of the information that will be made available to patrons is the “Ten Toys That Speaks To Autism.” The National Lekotek Center advised Toys R Us on choosing the toys for this list.
When asked about the list, Autism Speaks said “The ten toys selected promote language, creativity and social skills that aid an autistic child’s development. This unique list features toys that children with autism can play with alongside their siblings and friends and also includes early warning signs of autism.”
“Through our ‘Ten Toys That Speak to Autism’ initiative, we are pleased to provide an authoritative resource to help anyone who knows and loves an autistic child. Bringing smiles to all children through the simple act of play is at the very heart of our business, and we are proud to partner with Autism Speaks in its efforts to advocate for the needs of children and families affected by this disorder,” said Jerry Storch, Chairman and CEO of Toys “R” Us, Inc.
Read the entire press release on the Autism Speaks website.
We have returned from our first family vacation and right now everyone is asleep but me. My daughter is crashed out in bed next to me as she has major anxiety about sleeping in her own room. My son is asleep in bed with his new foam sword and shield and my husband fell asleep on the couch while watching TV. I had the urge to blog so here I am.
We started our vacation at Sea World and the day went really well until “The Dreaded Autism Tantrum.” Even then it didn’t ruin my day or the trip, its just a normal part of life for me. As I looked back through the pictures today I realized just how much fun both of the kiddos had; my daughter was enamored by the dolphins. I can’t wait until she’s six and we can get in the water with them.
On Friday we drove up to Legoland. I didn’t know what to expect from Legoland but we were going because my son really wanted to. We ended up having a great day. My son had two meltdowns but my daughter had none! I ran into a father of a child with autism while waiting to go on the roller coaster with my son. He explained that we could use what is called a disability pass to avoid the lines. I told him I hadn’t brought any medical documentation with me and he said none was needed. So after my son and I got off of the roller coaster we went to guest services and got a pass. I honestly think that made a huge difference in how my daughter handled the day.
This morning we woke up early, hopped in the car, and drove the six hours home. The kids handled the ride home relatively well; at 5 and 3 a six hour car ride isn’t exactly ideal. However I chose that over trying to coordinate two kids and all of their stuff for a flight.
This week will be a busy week for me. Monday is therapy day; both Alex & Ava have appointments with the occupational therapist. This is always a lot of fun for Ava who loves all of the sensory input and it is always a challenge for Alex who doesn’t want the input. I’m always exhausted after therapy from just having to work with Alex to try to get him involved. The therapist is wonderful and we work well with each other and can usually get Alexander to do most of the activities.
Tuesday will be an off day and then Wednesday its back to the psychologist for more tests for Alexander. I have filled out the Asperger Syndrome Diagnostic Scale (ASDS), the BASC-2, and the Vineland-II. I am not sure what tests Alexander will be taking on Wednesday but hopefully we can finish them so we can get the results next week on the 28th.
I have chosen to title this post “The Dreaded Autism Tantrum” instead of just “The Dreaded Tantrum.” Those familiar with autism understand what I mean. There is a difference between a tantrum from a neurotypical child and a tantrum from a child with autism.
My dear sweet daughter decided to throw the mother of all tantrums at Sea World today. Thankfully it was near closing time and we were already on our way towards the exit because I knew this was one of “those” tantrums. You know the kind…escalates to a point of hysteria…nothing calms them…you’re running the things your occupational therapist told you your child uses to help them calm through your head wondering which one is going to work this time? Should I hang her upside down knowing that at times that has helped her calm down? No no, I don’t want someone to think I’m doing something malicious to her. Should I just start bear-hugging her even though she’s fighting knowing that this is my own version of the squeeze machine and has worked in the past? I tried that - not only did it not work but I nearly got a head butt in the process. I was whispering in her ear asking her if she wanted squeezes and she was screaming at the top of her lungs, spit drooling from her mouth, hair a mess and not saying a single word - just sounds. We tried to have her walk, we tried to carry her, we tried everything and nothing was helping.
Of course this entire time people are looking, pointing, and whispering too each other. I heard about my spoiled child even though the comments weren’t directed at me. I saw the disappointed looks and heads shaking. What a horrible mother I am with a child of nearly 3.5 having a complete meltdown. What a horrible mother I am not being able to stop this meltdown. What a horrible mother I am picking her up and holding her. What people don’t see is a child who can’t communicate what her problem is. What people don’t see is a mother who’s only goal with this tantrum is to keep her sweet baby girl from hurting herself. Having a high tolerance for pain isn’t all that nice; I fear her slamming herself on the ground and gashing her head so instead I hold her, tightly, and whisper in her ear that mommy loves her and we’ll get through this one. Daddy was awesome too; he took his turn holding her and assuring her that we loved her and she was going to be alright. You know what else is awesome, my 5 year-old son just sat happily in his stroller playing with his new manatee stuffed animal completely oblivious to our ordeal. This is normal for him, he’s not embarrassed by it nor should he be. This is his baby sister and sometimes she just does this.
To those people reading this that don’t know what an “autism tantrum” please take a few minutes to think about this post next time you see a child having a break down in public. You don’t know what might be going on - instead of shaking your head at the parent, give them a warm smile, they need your support.
