In the news recently, it was reported that Simon Baron-Cohen and his team have created a children's show to help kids with ASD learn about emotions. To read the full article, see here:
http://www.npr.org/templates/story/story.php?storyId=99732203
I read the article and watched the video and one thing that I couldn't shake was that while it uses human faces, it does the same thing that Thomas the Tank Engine does. In fact, Thomas videos are one of the ways that I work on emotions with Little Bug. We talk about the faces and what the narrator is saying and in sign and speech label the emotions.
When I went to their website- thetransporters.com- I was shocked at the price- $57.50, which includes 75 minutes of video, 30 interactive quizzes, and a 36 page booklet for parents- think a teacher's guide.
Now I don't want to belittle this because it is great to have more resources to reach our children and what works for one may not work for another. I guess all I am saying is that for the cost and what it does, it may be worth looking at a library or contacting your FRC. Another option, try Thomas- seriously. It meets all the same points as the following article excerpt and is $9.99 a video and be watched for free on cable:
"Children with autism love to watch mechanical objects like vehicles," Baron-Cohen says, "probably because they're so predictable."
Each vehicle is a distinct character, including a cable car named Sally, a tractor named Barney and a tram named Charlie. Throughout each episode, their facial expressions change to match the emotions described by the narrator.
"Even if the child is focusing on the wheels going around on the vehicles, or on the levers and mechanical aspects of the vehicles, even without realizing it, they're going to be looking at the faces," Baron-Cohen says.
I applaud Mr. Baron-Cohen for his dedication and hard work. I am glad to see that ASD is getting so many resources and time. I worry for parents- often times, when we see breakthroughs like this, we think- I *have* to get that. While I would love to have Little Bug be able to watch it, $57.50 for one DVD is steep. Especially when we do the same thing with Thomas.
Friday, January 30, 2009
Wednesday, January 28, 2009
Today's the Day
On a state and national level, today is a major day for Autism. Many decisions will be made- some specific to Washington regarding a minimum insurance coverage for all families and on a national scale, specific to IDEA, EI, and tons of other services for people with disabilities.
On a personal note, the ball has started rolling for Little Bug's placement to school. This means that I am going to be reading a lot about Wrightlaw and IEPs. It sounds like the process will culminate in April with an IEP meeting, but will include the following steps:
On a personal note, the ball has started rolling for Little Bug's placement to school. This means that I am going to be reading a lot about Wrightlaw and IEPs. It sounds like the process will culminate in April with an IEP meeting, but will include the following steps:
- A home meeting with the Director of Special Education to map out Little Bug's process
- Evaluations at ChildFind
- An evaluation meeting
- An IEP Meeting
Nick and I are really excited because our favorite therapist A will be coming to the last to meetings with us. Our FRC will be coming to the first two, which is also really exciting.
Friday, January 23, 2009
So Tired
So, the restlessness continues at our house. It started on Tuesday night when Little Bug woke up at 1:00 and was up for the day. Nick and I were exhausted and hoping that he would go to bed early. Well, he did, but only to wake up at 11:00 PM and stay up for an hour and then get back up at 4. He did the same thing last night. Nick and I are exhausted and waiting for our PCP to return to talk to him about this and what we can do to help everyone get some rest.
Little looks like a walking zombie- half in and out of it and never really engaged.
As many, many people in blogosphere and news have discussed and pointed out, the new administration has their website up and has included this under the category of Disabilities under "the Agenda":
DISABILITIES
"We must build a world free of unnecessary barriers, stereotypes, and discrimination.... policies must be developed, attitudes must be shaped, and buildings and organizations must be designed to ensure that everyone has a chance to get the education they need and live independently as full citizens in their communities."
-- Barack Obama, April 11, 2008
Barack Obama and Joe Biden have a comprehensive agenda to empower individuals with disabilities in order to equalize opportunities for all Americans.
In addition to reclaiming America's global leadership on this issue by becoming a signatory to -- and having the Senate ratify -- the UN Convention on the Rights of Persons with Disabilities, the plan has four parts, designed to provide lifelong support and resources to Americans with disabilities. They are as follows:
First, provide Americans with disabilities with the educational opportunities they need to succeed by funding the Individuals with Disabilities Education Act, supporting early intervention for children with disabilities and universal screening, improving college opportunities for high school graduates with disabilities, and making college more affordable. Obama and Biden will also authorize a comprehensive study of students with disabilities and issues relating to transition to work and higher education.
Second, end discrimination and promote equal opportunity by restoring the Americans with Disabilities Act, increasing funding for enforcement, supporting the Genetic Information Nondiscrimination Act, ensuring affordable, accessible health care for all and improving mental health care.
Third, increase the employment rate of workers with disabilities by effectively implementing regulations that require the federal government and its contractors to employ people with disabilities, providing private-sector employers with resources to accommodate employees with disabilities, and encouraging those employers to use existing tax benefits to hire more workers with disabilities and supporting small businesses owned by people with disabilities.
And fourth, support independent, community-based living for Americans with disabilities by enforcing the Community Choice Act, which would allow Americans with significant disabilities the choice of living in their community rather than having to live in a nursing home or other institution, creating a voluntary, budget-neutral national insurance program to help adults who have or develop functional disabilities to remain independent and in their communities, and streamline the Social Security approval process .
Autism
President Obama and Vice President Biden are committed to supporting Americans with Autism Spectrum Disorders (“ASD”), their families, and their communities. There are a few key elements to their support, which are as follows:
First, President Obama and Vice President Biden support increased funding for autism research, treatment, screenings, public awareness, and support services. There must be research of the treatments for, and the causes of, ASD.
Second, President Obama and Vice President Biden support improving life-long services for people with ASD for treatments, interventions and services for both children and adults with ASD.
Third, President Obama and Vice President Biden support funding the Combating Autism Act and working with Congress, parents and ASD experts to determine how to further improve federal and state programs for ASD.
Fourth, President Obama and Vice President Biden support universal screening of all infants and re-screening for all two-year-olds, the age at which some conditions, including ASD, begin to appear. These screenings will be safe and secure, and available for every American that wants them. Screening is essential so that disabilities can be identified early enough for those children and families to get the supports and services they need.
First of all, I am ecstatic that this isn't filed under health care and that there isn't a mentioning of curing or ridding ASD. Second, I was extremely surprised that ASD received this much attention. While section 4 seems like a huge suggestion, it's worth a shot. The portion that fills me with hope the most is "life-long services".
Little looks like a walking zombie- half in and out of it and never really engaged.
As many, many people in blogosphere and news have discussed and pointed out, the new administration has their website up and has included this under the category of Disabilities under "the Agenda":
DISABILITIES
"We must build a world free of unnecessary barriers, stereotypes, and discrimination.... policies must be developed, attitudes must be shaped, and buildings and organizations must be designed to ensure that everyone has a chance to get the education they need and live independently as full citizens in their communities."
-- Barack Obama, April 11, 2008
Barack Obama and Joe Biden have a comprehensive agenda to empower individuals with disabilities in order to equalize opportunities for all Americans.
In addition to reclaiming America's global leadership on this issue by becoming a signatory to -- and having the Senate ratify -- the UN Convention on the Rights of Persons with Disabilities, the plan has four parts, designed to provide lifelong support and resources to Americans with disabilities. They are as follows:
First, provide Americans with disabilities with the educational opportunities they need to succeed by funding the Individuals with Disabilities Education Act, supporting early intervention for children with disabilities and universal screening, improving college opportunities for high school graduates with disabilities, and making college more affordable. Obama and Biden will also authorize a comprehensive study of students with disabilities and issues relating to transition to work and higher education.
Second, end discrimination and promote equal opportunity by restoring the Americans with Disabilities Act, increasing funding for enforcement, supporting the Genetic Information Nondiscrimination Act, ensuring affordable, accessible health care for all and improving mental health care.
Third, increase the employment rate of workers with disabilities by effectively implementing regulations that require the federal government and its contractors to employ people with disabilities, providing private-sector employers with resources to accommodate employees with disabilities, and encouraging those employers to use existing tax benefits to hire more workers with disabilities and supporting small businesses owned by people with disabilities.
And fourth, support independent, community-based living for Americans with disabilities by enforcing the Community Choice Act, which would allow Americans with significant disabilities the choice of living in their community rather than having to live in a nursing home or other institution, creating a voluntary, budget-neutral national insurance program to help adults who have or develop functional disabilities to remain independent and in their communities, and streamline the Social Security approval process .
Autism
President Obama and Vice President Biden are committed to supporting Americans with Autism Spectrum Disorders (“ASD”), their families, and their communities. There are a few key elements to their support, which are as follows:
First, President Obama and Vice President Biden support increased funding for autism research, treatment, screenings, public awareness, and support services. There must be research of the treatments for, and the causes of, ASD.
Second, President Obama and Vice President Biden support improving life-long services for people with ASD for treatments, interventions and services for both children and adults with ASD.
Third, President Obama and Vice President Biden support funding the Combating Autism Act and working with Congress, parents and ASD experts to determine how to further improve federal and state programs for ASD.
Fourth, President Obama and Vice President Biden support universal screening of all infants and re-screening for all two-year-olds, the age at which some conditions, including ASD, begin to appear. These screenings will be safe and secure, and available for every American that wants them. Screening is essential so that disabilities can be identified early enough for those children and families to get the supports and services they need.
First of all, I am ecstatic that this isn't filed under health care and that there isn't a mentioning of curing or ridding ASD. Second, I was extremely surprised that ASD received this much attention. While section 4 seems like a huge suggestion, it's worth a shot. The portion that fills me with hope the most is "life-long services".
Wednesday, January 21, 2009
Word Association
Think of what you ate for dinner last night. How would you describe it? Many people would use words like good, soft, chewy, spicy, sweet. Little Bug was having dinner and doing his usual "Mmmm...MMMmmMM." with every bite. I asked him if it was good- by sign and speech. He looked at me and said, "No, Daddee. feen (GREEN in sign), Ru (RED in sign), Purple." We talked about the colors and how those weren't any of the colors on his plate. When I asked him again if it was good, he gave the same answer, adamant that those words described his food.
At first, I was incredulous- he doesn't know his colors? I know he knows he colors! But then I thought, what if those colors are representative of things that he associate good feelings. Sure enough, his favorite shark is GREEN. Lightning McQueen is Red. Lady the engine is Purple. Now, it could be coincidence, but I honestly doubt it. Little Bug associate things in ways that always take me a while to figure out, but they are always there.
At first, I was incredulous- he doesn't know his colors? I know he knows he colors! But then I thought, what if those colors are representative of things that he associate good feelings. Sure enough, his favorite shark is GREEN. Lightning McQueen is Red. Lady the engine is Purple. Now, it could be coincidence, but I honestly doubt it. Little Bug associate things in ways that always take me a while to figure out, but they are always there.
Sunday, January 18, 2009
Alternate Options
Remember a couple of weeks ago when I said Little Bug was falling asleep by himself? That is no more and he is back to not sleeping through the night. Friday night, he woke up at 2 in the morning and cried until 4. Then back to sleep and up at 7. Last night, he sat up several times and would touch the dog and talk to him.
Nick and I are very hestitant to give Little Bug anything, but it might be time to look for an alternate option. I know my friends over at Both Hands and a Flashlight have suggested melatonin, which will be our first thing to look into. Quite honestly, we are very skeptical when it comes to medication or herbal supplements and children. At this point, we have to consider it. He is 2 and a half and still not sleeping through the night.
Quite honestly, Nick and I need some relief and Little Bug needs a better quality of sleep. If you have any suggestions, send 'em our way!
Nick and I are very hestitant to give Little Bug anything, but it might be time to look for an alternate option. I know my friends over at Both Hands and a Flashlight have suggested melatonin, which will be our first thing to look into. Quite honestly, we are very skeptical when it comes to medication or herbal supplements and children. At this point, we have to consider it. He is 2 and a half and still not sleeping through the night.
Quite honestly, Nick and I need some relief and Little Bug needs a better quality of sleep. If you have any suggestions, send 'em our way!
Friday, January 16, 2009
Speech Evaluation Results
We met his new therapist yesterday for speech and we really liked her. Little Bug, as expected, was pretty upset by the evaluation- before, during, and after it. He had a couple of minor meltdowns and we had to take a couple of walks during the evaluation. On a side note, it was nice for one of his therapists to finally see this behavior in person and not just by video or in anecdotal tales.
The last time he was tested, he received a 64 in receptive speech, which rated a severe delay as the "normal" range is 85 to 115. In expressive speech, he rated a 74, a significant moderate delay. This time, his expressive speech had not changed. His receptive speech has gone up to a 71, which is amazing! As a child ages, the curve grows with the expectations raising. He made up ground! His over all score was a 72- a significant moderate delay.
It was the best bad news we have received. I imagine that one day, hearing significant moderate delay will stop hurting... eventually. Its not that we don't accept him- we love every moment with him (even when it is hard beyond belief) and everything about him. Its just as a parent, you want to give your child every opportunity. Sometimes, these situations make it hard to see what opportunities are there. He's not a victim of anything- that's not how we see him. Its hard to hear other people say that because of who he is, he is limited. We know that can't be true and will accept nothing less. Little Bug will reach his fullest potential- whatever that is.
I don't think that I can accurately capture why this hard without sounding like I am demeaning him or not appreciating the accomplishments he has made- and he has made tons! It is simply emotionally hard. I imagine many parents struggle with this feeling- of loss, of guilt, of second guessing. Often times, when I feel hurt- like by the results- I instantly feel guilty about feeling hurt. I have to defend and rationalize my feelings to myself rather than simply being. It is a dizzying maze and hard to explain. I'm sure you know what I am feeling.
The last time he was tested, he received a 64 in receptive speech, which rated a severe delay as the "normal" range is 85 to 115. In expressive speech, he rated a 74, a significant moderate delay. This time, his expressive speech had not changed. His receptive speech has gone up to a 71, which is amazing! As a child ages, the curve grows with the expectations raising. He made up ground! His over all score was a 72- a significant moderate delay.
It was the best bad news we have received. I imagine that one day, hearing significant moderate delay will stop hurting... eventually. Its not that we don't accept him- we love every moment with him (even when it is hard beyond belief) and everything about him. Its just as a parent, you want to give your child every opportunity. Sometimes, these situations make it hard to see what opportunities are there. He's not a victim of anything- that's not how we see him. Its hard to hear other people say that because of who he is, he is limited. We know that can't be true and will accept nothing less. Little Bug will reach his fullest potential- whatever that is.
I don't think that I can accurately capture why this hard without sounding like I am demeaning him or not appreciating the accomplishments he has made- and he has made tons! It is simply emotionally hard. I imagine many parents struggle with this feeling- of loss, of guilt, of second guessing. Often times, when I feel hurt- like by the results- I instantly feel guilty about feeling hurt. I have to defend and rationalize my feelings to myself rather than simply being. It is a dizzying maze and hard to explain. I'm sure you know what I am feeling.
Thursday, January 15, 2009
Just when you think you have it figured out...
...it all changes. Last night, we had teriyaki and tempura for dinner. This usually means that Little Bug eats two balls of rice, a couple pieces of chicken, and a broccoli tempura. Not last night- he took it upon himself to try each vegetable- he touched the sweet potato, took several bites of the green pepper, and licked the onion! It was amazing. Anyway who knows Little Bug knows that his veggies are tomatoes, potatoes, and corn and he generally survives on chicken strips because he has become so restrictive in what he is eating. We were absolutely shocked.
Our night of newness continued by witnessing Little Bug relating with a movie in a personal way. We watched Horton Hears A Who, and he took it upon himself to rename the characters- Nick was Horton- the lovable but easily distract able elephant who had to stand up to his jungle community for his friends, I was the cranky and strict kangaroo- who needs to learn to have faith and to relax, and Ama was the mayor- who's mission is to stand up for what he knows is right. Nick and I couldn't help but laugh because when it came to the root lesson or mission the character had, Little Bug was right.
Today, meets his speech therapist and has another evaluation on his speech. I am anxious for two reasons. First, I am anxious to find out how far he has come in the past four months. Its kind of a measure of the work we have done, you know? Secondly, these evaluations make him bonkers afterwards. He generally becomes unhinged and like a wild animal- no talking, lots of grunting, and very nervous. Its really primal and I don't completely understand the reaction. It often leaves me wondering if we really know all that much about ASD and the brain in general. At times, the evaluations remind me of a mechanic that is whacking at an engine with a wrench, praying to hit the right part.
Our night of newness continued by witnessing Little Bug relating with a movie in a personal way. We watched Horton Hears A Who, and he took it upon himself to rename the characters- Nick was Horton- the lovable but easily distract able elephant who had to stand up to his jungle community for his friends, I was the cranky and strict kangaroo- who needs to learn to have faith and to relax, and Ama was the mayor- who's mission is to stand up for what he knows is right. Nick and I couldn't help but laugh because when it came to the root lesson or mission the character had, Little Bug was right.
Today, meets his speech therapist and has another evaluation on his speech. I am anxious for two reasons. First, I am anxious to find out how far he has come in the past four months. Its kind of a measure of the work we have done, you know? Secondly, these evaluations make him bonkers afterwards. He generally becomes unhinged and like a wild animal- no talking, lots of grunting, and very nervous. Its really primal and I don't completely understand the reaction. It often leaves me wondering if we really know all that much about ASD and the brain in general. At times, the evaluations remind me of a mechanic that is whacking at an engine with a wrench, praying to hit the right part.
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