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.
I have been mentioning Asperger Syndrome a bit these days as my son goes through the evaluation process but haven’t officially listed Asperger Syndrome as part of my mutterings. After discussing his quirks with family as well as the psychologist I suspect that he will be diagnosed with Asperger Syndrome but I don’t want to put the horse before the cart, so-to-speak.
So what is Asperger Syndrome (AS)? Asperger Syndrome is part of the autism spectrum and resides in the DSM-IV under the diagnostic code of 299.80. One of the main differences between Asperger Syndrome and other autism spectrum disorders is in the communication realm. Children with Asperger syndrome develop language at an age-appropriate level; it is their use of the language that sometimes differs from neurotypical children. Often-times you will see a child with Asperger Syndrome called a “little professor”. They will be a veritable encyclopedia of knowledge but usually only about a narrow subject matter; for example dinosaurs. A child with AS may know every fact known to man about dinosaurs and will gladly share that with you whether or not you show interest in the topic.
As with other Autism Spectrum Disorders, children with Asperger Syndrome do have social deficits. Some children may not show social or emotional reciprocity while others have a difficult time making and keeping friends even though they may want to have friends. Social skills training can be very beneficial for children with AS.
The OASIS website is a fantastic resource for all things relating to Asperger Syndrome. You could spend hours on their website and not read everything. I have found it quite helpful in trying to figure out what’s going on with my son. I won’t know anything definitely for a few weeks as we’re still going through testing and evaluation but I’m definitely curious to see how this all turns out.
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.
When I switched servers and blog providers the destination page changed. To view the entire topic please visit: The Dreaded Autism Tantrum.
VH-1 Classic has announced their new project - “Rock Autism“. This project will begin on April 1st to kick off Autism Awareness Month and is designed to raise awareness about autism. The announcement was made at the Cable Television Public Affairs Association annual conference by Tom Calderone, Executive Vice President and General Manager of VH1.
“Autism is such a devastating disorder for so many families, and its rate of prevalence is increasing at an alarming rate, VH1 Classic has dedicated itself to making an impact on autism because many of our viewers are parents who are now dealing with this issue. We’ve also found over the years that this disorder has touched the lives of many of the artists and musicians that we work with at VH1 Classic.”
The campaign will include public service announcements, VH-1 Classic news breaks, and even on-air fundraising events. More information will be available in the coming days at a yet-to-be published website: http://www.rockautism.vh1classic.com/
Read the entire story here. VH1 Classic to Launch First-Ever Pro-Social Campaign
I ran across two interesting news bits today that I wanted to share.
Ped Med: Timing key to treating autism
An excerpt:
When it comes to treating autism, timing is everything, or at least a major
part, specialists say. Children with the neurodevelopmental disorder must be
taught what comes naturally to their peers, and while the brain is still pliable
enough to absorb the lesson, experts said. Because the immature nervous system
has a great deal of plasticity, many neuroscientists think early treatment may
enrich neural growth.
Parents Should Look for Autism Signs Early
An excerpt:
Doctors at Maryland’s Kennedy Krieger Institute, one of the country’s
leading autism centers, say they can now identify symptoms in children
younger than ever before.
These two articles are definitely related and of extreme importance in my opinion. The earlier autism is diagnosed, the earlier interventions specific to autism can start, and the chances of a better outcome. My daughter did not benefit from any Early Intervention services and that is partially my fault and partially the family doctor’s fault. The family doctor admittedly didn’t know much about developmental issues and felt that she was fine and would eventually catch up. It is my fault because I switched from a pediatric practice to a family practice early on in my child’s lives. I have since switched back to a pediatric practice for my children.
My daughter didn’t start receiving services until she was 2 years and 10 months of age and started at a developmental preschool run through the local school district. She has come a long way in the past five months and is starting to communicate quite well for which we are all thankful. It makes me wonder where she’d be had we started early intervention at 18 months or two years of age. I can’t get back that lost time so I don’t spend much time dwelling on it but everyone now and then I do think ‘what if’?
Today was…well…long. Long isn’t a negative word, right? Therapy was quite challenging for my son yet again. He refused to do anything at the beginning. The therapist usually starts off with “astronaut training” which is a vestibular protocol that he usually enjoys. He did not want to do it however he ended up making a deal with the therapist. If he could climb the rock wall first then he’d start his therapy session; they shook on it and up the wall he went. He quickly climbed (he has a path memorized) and when he got to the top the therapist said “look, you did it just like a real one” and he said “No, I don’t have a rope.” So she says “I’m your rope.” He looked at her and said “you’re not a rope.” Well, true. LOL The kid is so literal sometime that I can’t help myself but to giggle.
He stayed on-task relatively well until the end of the therapy session neared and it was time to do an infinity walk. Basically you walk in a figure eight while reading letters and numbers off of a printout. This led to a meltdown last week but thankfully only defiance this week. He absolutely refused to do it and I can’t figure out why. We ended therapy without an infinity walk. My husband stayed on while my daughter had her session while I took my son to see the psychologist.
We went to the psychologist’s office and the doctor came out to call us in and my son sat on the couch and didn’t move nor would he look at her. I told him it was our turn and he said “I don’t see anyone.” Nice. I finally coaxed him in and we asked him if he’d like to go color in another room or play with the toys in her room, he chose to sit on the couch and stare out the window nearly oblivious to us. Partway through the meeting he asked if he could go into the other room to color because he wanted to be ‘alone’. So we set him up (with supervision) to color and the continued to talk. About ten minutes later we hear a knock at the door and its Alex with a page full of drawings. Guess what he drew - Star Wars characters…surprise surprise! The boy loves his Star Wars.
By then he was getting impatient so she gave me a bunch of paperwork and setup our follow-up appointments. His IQ testing will be next week. My homework includes the Asperger Syndrome Diagnostic Scale (ASDS), the Vineland-II, and the Behavior Assessment System for Children (BASC-2). Being the anal person that I can be I’ve already completed them all. Now I just get to wait for our next appointment which won’t be until mid-week next week.
Happy Monday!
This week is Spring Break for my kiddos and my husband took the week off so I actually got to sleep in this morning! Evidently my son and I were the only two to sleep as my daughter had a rough night and daddy took care of it so I could sleep; he’s napping now.
Monday is therapy day around our house. We go hang out with the occupational therapist (to address the sensory processing issues, motor planning issues, gross and fine motor delays, etc) for two hours as my daughter has therapy first and then my son follows up. Since they have pretty opposite needs, and are a two years in age apart, there is no combined therapy for us. My daughter absolutely loves therapy, her eyes light up and she has so much fun. She loves experiencing all the sounds, things to touch, etc. My son, on the other hand, isn’t as enthusiastic.
The therapist is really challenging my son and he’s showing her his little stubborn streak. He has some pretty concrete tactile defensive issues and spent ten minutes completely refusing to touch the shaving cream on the mirror. When he accidentally got shaving cream on his hand he quickly wiped it off on his jeans. Today should be interesting as last week was a very difficult time for him as he refused to participate in a few different activities. Hopefully he’s more open to it this week.
After therapy we will be meeting with the psychologist that diagnosed my daughter; but this time the topic of conversation is my son. He’ll be assessed for Asperger’s syndrome as well as have an IQ test administered. Thankfully my husband will be able to take my daughter home so it will just be my son and I at the psychologist’s office. It will be interesting to see if he interacts with her. Our last appointment, with a nutritionist to address his weight loss, didn’t go so well. He sat in the chair, facing the back of his chair, with his face on the chair and refused to talk to her. He’d talk to me and I’d have to relay it. Some people may think that he was being rude but he’s just a shy kid and this was too much for him. The psychologist’s office is much more kid-friendly so he might immediately feel at ease. Guess we’ll find out this afternoon!
