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.
My son saw the psychologist again this morning for an IQ test. The test du jour was the WPPSI-III also known as the Weschler Preschool Primary Scale of Intelligence; this is the same test my daughter took. Evidently the age range on the test is from 2-6. The psychologist had me wait in the waiting room while she and Alexander went through the test items. This waiting was oh so annoying as there was another patient there who had her cd player on very loudly; even though she had headphones on I could hear every note and every word of every song. I was hoping for a nice quiet morning and instead I got distorted music blaring through the headphones of a person sitting a good ten feet from me.
In addition to the test I dropped off all of the paperwork for the psychologist to score. We were originally going to do a follow-up on Wednesday, March 28th but the psychologist would like to see Alexander on Monday the 26th where she will administer one more test and then go over the results of the tests and her ultimate findings with me. On Monday she’ll be administering the ADOS - Autism Diagnostic Observation Schedule. This test was also administered to my daughter. I know my son will score much differently than my daughter did as he doesn’t have the communication delays. It will be interesting to see what the result of all the testing is. Being the impatient person that I am, I’m glad that we are being seen a full two days earlier than I originally expected.
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.
Well the short answer to what happened last night is this: the weighted blanket didn’t help. Last night was just a horrible night, my dear sweet husband took the brunt of it. We tried our typical bedtime routine with my daughter and within five minutes she came running and screaming out of her room petrified of who knows what. Instead of talking her into going back in there her and I piled into my bed. Mind you she goes to bed early - 6:30pm or so; I’m not always ready to go to bed at that time. However I really didn’t have much choice, thankfully she cooperated and let me watch TV - it didn’t seem to distract her last night.
I managed to get her to sleep and after about an hour in my bed we moved her to her bed and under her nice, new weighted blanket. Within two hours she was up and out, absolutely petrified. My husband was still awake and put her to sleep on the couch (he was working on his laptop). He moved her to her bed at one point and then he went to sleep. Something caused her to wake up and she broke into the refrigerator and ate one of my son’s cups of super pudding (homemade pudding, special recipe, lots of calories). Something must have caught my husband’s attention because he got up; evidently there was a bit of a chocolate mess that needed to be tended to so he did. He then crawled on the couch with my daughter and tried to cuddle her back to sleep.
Being the sweet man that he is he let me get some sleep last night as I haven’t been feeling well (I got a nasty sunburn on vacation and am still sunburned five days later). I don’t know what it is about children with autism having sleep issues but egad this is wearing me thin. On another blog that I read (Autism - A Blog On The Spectrum) a mother has talked about how she’s been dealing with the sleep issues for seven years now…that’s a long time. I’m only going on year four and am already drained. Calgon…take me away!
Finally, after nearly three months, we have received our handmade, custom ordered weighted blanket from Dreamcatcher Blankets. The blanket is beautiful and perfect for Ava. It is purple with a sparkly thread (which is evidently all the rage this fashion season) and has the Disney Princesses all over it. We ordered a five pound twin size blanket based on the recommendation from our occupational therapist. Tonight we try it.
I’ve put a lot of eggs in the weighted blanket basket because we’ve tried just about everything else to help Ava with her sleep issues. She used to just have a hard time going to sleep and staying asleep. Now she has major anxiety/fear issues with sleeping alone. She is in her room for just a few minutes then something happens and she absolutely panics. She’s not trying to manipulate us (I don’t think she’s cognitively at that level); she is simply terrified. She will come running out of her room at break-neck speed and her heart will be pounding so hard you think its going to come out of her chest. She doesn’t have the language capacity to tell us why she is scared so we either lay in bed with her or she comes in bed with me. Lately what has worked is having her fall asleep in my bed, then a few hours later she asks for her bed and we move her to her bed. She’ll wake up in the middle of the night wide awake and freaked out and someone ends up in bed with her. At least she stays in bed longer now, even if she’s not sleeping. Hopefully the blanket helps quell her fears as well as increases her sleep - we’re all tired in this house.
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.
