The Transporters

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.

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:

1. A home meeting with the Director of Special Education to map out Little Bug's process
2. Evaluations at ChildFind
3. An evaluation meeting
4. 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.

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".

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.

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!

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.

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.

What a weekend!

It seems like with children in general, as soon as you think you have something figured out, it changes. Little Bug was falling asleep by himself. Not anymore. Friday night was spent putting him into bed over and over again. Very businesslike- "It's time for bed." Done without emotion or eye contact. Not that it helped, five minutes later, I would hear the crinkle of diaper and the thunks of little feet.

Saturday, he did the scariest thing that I think I have ever seen. We were at the bus stop- his weekly treat is riding the bus. It was raining and I wanted him to sit on the bench inside the shelter. He refused to sit on the bench and kept standing up. Over and over this battle would rage- me having him sit down and him standing right back up. He went to stand up and grab my arm, which made me slip. When I slipped, he fell down and hit his head on the shelter- cutting his earlobe and creating a nasty purple shade in the cartilage. He screamed bloody murder for maybe thirty seconds and then was fine- just didn't bother him. Meanwhile, I couldn't tell where the blood was coming from- it initially looked like it was coming from inside his ear. We got it somewhat cleaned up- enough to know that it was only a tiny cut on his earlobe- and then rode the bus home. I put him in his high chair and cried in the next room. I was so scared and he didn't care about what happened. To him it was like it never happened. Even now, with his ear a wonderful shade of purple which looks like it should hurt, he isn't bothered.

To me, that is the scariest. You never know when he is hurt. If he doesn't feel good. I can't help but wonder how would we know if something really was wrong.

On Sunday, we went goodwilling- its fun to do. Little Bug often comes out with a ton of new cloths and books that were a buck each and Nick and I like the search. We found a great book for working on emotions- Sad Monster Glad Monster. It comes with fold out masks and asks children to describe the monsters. The one down side was Little Bug's meltdown in the store if I wanted to look at something without him. You would have thought that Nick was abducting him. "No! Daddee Halp! No, no, no! Owie!" Over and over again. If I didn't know them, I would have gone over and asked if he needed help. Surprisingly, no one noticed or if they did, weren't concerned.

On Monday, I debuted a new therapy with him- the magic box. I read somewhere that many children with ASD have a hard time using multiple senses at the same time. We are currently working on adjectives, so I figured why not put the items in a black bag and have him feel them and teach him the adjective that describes the word. It took a lot of trust on his part, but he can do it. We noticed though that once he sees the item, he can no longer describe it. His therapist A was impressed at our exercised and really interested to that he couldn't describe it.

Here's an example- I placed a softy fluffy baby chick toy in and had him feel it. He was able to repeat SOFT while touching the item. When he retrieved it and was able to see and touch the item, he could no longer repeat the word. We repeated this with a pumice stone, squishy lizard, and cotton ball. Each time, the same scenario played out. It was as though his little brain couldn't process all of the sensory information being provided at once. When isolated, he was able to respond correctly.

I don't know what it means or if it means anything, but it is fascinating to see how his mind works. This will help us be better parents. For us, this whole process isn't about changing him to a mold of normal or curing him, it is about learning how to adapt ourselves to meet him halfway. Hopefully, that is what we are accomplishing.

Nick found some wonderful articles to take to his parents and so did our therapist to help them understand ASD and SID and hopefully, bridge the gap.

Broken Record

Little Bug is "stuck"- not in the literal sense, but like a broken record. He constantly repeats things that he has said over and over again. For example, last night I asked if he wanted juice. "Want juishh. Want juissh. Want juissh. Want juissh." Originally, I thought that he was spontaneously answering the question with his own unique answer, but the more we look at it, the more we realize that he is simply repeating the question- Do you want juice?.

We don't know how to break this. This is going to seem stupid, but boy is is frustrating. He will continue saying "Want juissh." until the juice is in his hand. This can be extrapolated out to billion other things. Like if we tell he we are going to go to a store first and then he and I are going on the bus, he will say "On da bus." until we get on the bus- and sometimes even after we get on the bus.

At first, we thought that this was just impatience, but as we learn more, it is clear that he is repeating what we are saying.

In one on one therapy, they are working on yes or no questions. The first one was asked about a blue ball- Is this green? We all know what he should have said, but what he said was "Geen?" and signed green over and over again until his therapist moved onto the next question.

If you give him a verbal choice- apple or banana- he will always choose the last thing you say, even if it isn't what he wants. He will continue to yell that word and indicate that he doesn't want that item by refusing it until you give him the first choice.

"Freaks!", you said.

Before passing judgement on a person's behavior, mannersisms, or how they look, please stop and think. You have no idea what is going on in that person's life. You have no idea who else your comment might offend- even if it isn't directed at them. Have compassion. Give people the benefit of the doubt.

If you can't do any of the above- at least, think before you speak. When all else fails, don't say anything at all.

Mid year review

We received notification from our FRC that it is time for her to do our mid year review and then our next step will be to get ready for preschool. Talk about fast, it seems like we only just started this and have barely gotten our feet yet.

It is becoming a time of unknown. Will Little Bug qualify for preschool? We hope so. The plan from everyone in the system, has always been that of course that he would go to preschool. But, apparently, due to the progress he has made, there is doubt as to whether he would qualify. We will have to have him evaluated by the school district and get recommendations from the wizard- the wonderful neurologist who diagnosed Little Bug- as well as his current therapists. Monday was the first time anyone expressed doubt about him qualifying- well, he does have a diagnosis, so that's a good thing.

If anyone has tips or suggestions or even a vague idea about how this process works, please let us know. I have to say everyone involved has been as vague as humanly possible while still speaking to us.

Even during this time of ambiguity, we are adding new therapies- speech and brushing as well as home made therapies. We are working on item recognition. While its great that he can say quite a few words, he doesn't always get that a word represents an idea or object. So, we have crafted a home game using memory cards to have him match pictures- which keeps him interested as it is a puzzle- and having him name the objects.

A hoot and holler

Little Bug has his first day back at school yesterday. My ears still hurt. It was as though all four children in attendance were communicating by meltdowns and echo-location only yesterday. I have never in all my life heard such noise.

They all had difficult moments- being all done, not tackling our friends, not throwing fire trucks at each other, and no eating the blue sand. With school, it normally seems like each child has an assigned bad day where everything is hard and they need extra help from the therapists and parents. But, they usually happen one at a time.

They all had hard days yesterday. I have a feeling that this was due to the extended break from school- two weeks planned and a week and a half unplanned.

Therapist A came over yesterday and it was great to see her and have her work with Little Bug again. She watched the videos we had made and was truly shocked. She was surprised to see Little Bug have such a hard time, but she did say we did a great job- we were even keeled, continued with the process of the task at hand regardless of the drama occurring. She had no criticism for our handling of the situation, but was surprised.

She asked us to continue video taping as she felt like she was really getting to see the whole picture. Again, we asked her if there was something we were doing to cause such a different behavior and she still feels that it is because she is still too novel with Little Bug.

We made a recap for her of the accomplishments and hardships from break and I would like to share them with you-

1. Little Bug can now put on his own pants.
2. He tried 4 new foods- including jello
3. He has mastered the concept of 1- take 1 M&M, etc.
4. Self injuring has decreased and changed to hitting himself rather than biting
5. He is falling asleep by himself
6. He is singing along with songs- in his own language

Now, here are the difficulties-

1. Echolalia- he is repeating large portions of movies and what you say
2. While meltdowns are becoming less frequent, they are much more intense.
3. He has developed a sensitivity to having textures on his hands. This morning, running water on his hand made him scream and recoil.

One new difficulty for us and Little Bug is that he now is overly attached to me. Which is hard on Nick, because Little Bug screams when he tries to interact with him. Its also hard on Little Bug because I am the main worker of the home. If anyone has suggestions- other than backing up what Nick has told him, let us know, because this is pretty upsetting to everyone involved.

We also found out that we should begin speech therapy soon!

How many licks does it take...

to get to the center of a table leg? I don't know yet but I am sure that Little Bug will soon find out. He has always had a passion for eating and chewing things that shouldn't- rocks, sand, glass, the dog, and the top of the aforementioned table is missing a Little Bug bite. With the chewie and the P or Q- whichever you like- we thought we had this beat.

Um... no. He spent about 5 minutes licking the table leg. After (I thought) successfully distracting him with beans for tactile input and a chewie, he began to lick the couch. For an extremely long time- onwards of 20 minutes and no amount of restraining or distracting could keep him from this.

These are the times when I shake my head and wonder- what in the hell was I thinking? I look at when we were planning to have Little Bug and I thought of all the things he would do. This was never on the list. I feel silly and small when these things happen because, to a certain extent, I am mesmerized and incapable of action.

Nick and I were discussing it last night and wondering how this fit in with some of his new requests- salt and Johnny's seasoning. I had to hide the salt shakers and Johnny's as he was trying to steal them. He also has been making a fake retching face/action.

We can't ask him if it hurts, because that doesn't register for two reasons. First, that question will be interpreted as "Does said body hurt right this second?" Second, he doesn't interpret pain the way you and I would.

We also discussed taking him to the doctor's office, but were unsure why, again for two reasons. First, what do you say- my son, with ASD, has increased oral stimulation seeking behavior to a new high and is stealing the salt and pretending to retch, but we think that might all tie together. Second, our doctor isn't House and would laugh us out of the building.

Maybe we give Little Bug too much credit, and I am sure some people believe that and that we overanalyze and make everything more important that it is. But we firmly believe that all behaviors have an explanation. You simply have to look and dig. Often times, you have to change your perception. I never understood his flapping by the Christmas tree or in the bathroom mirror until I did it (it creates a really cool strobe light effect and also seems to make the light in our apartment less harsh). In this case, I am not suggesting I should lick the couch and eat boatloads of salt, but I do think that Nick and I will need to adjust our narrow perspectives once again.

I am thankful every day for these experiences and for Little Bug. Every day, he broadens our horizons and reminds us that just because its the way we do it or feel it, doesn't make it the only way. Who says people with ASD are the only ones affected by mind blindness? I think we all are at times.

On a different note, we believe that Little Bug is exhibiting echolalia. While his speech is limited, he is demonstrating that he has huge portions, and sometimes all, of a movie memorized. We aren't talking about just one line from his favorite character in his favorite movie, but many lines, mannerisms, and facial expressions from multiple movies.