The two week break was fun. The kids got to see their relatives in Los Angeles and we took a 3 day trip to Palm Springs. We went up the tramway and Ethan got to play in the snow for the first time. It was much fun.




The kids are back in school. As usual Ethan's first few days back after the break were a little shakey, but he seemed better by the end of the week. I'm extremely concerned about the summer this year and the lack of extended school year by the district. Ethan really needs something structured in the summer to keep the break shorter and prevent regression. His aide is now not there 2 hrs during the day. His teacher is great and knows his triggers and truly works hard to make him feel comfortable.

IEP (triennial) is coming up in March and that is always stressful. There's so much involved and the current financial state of the school district probably makes things even more difficult this year, even though legally it should have no influence according to the IDEA. But this is reality.

American Idol has begun again. It's Ethan's favorite show. He's been following it for 4 seasons now. In some ways it's great TV for someone autistic because the entire show is built around real people showing emotions. We often ask him questions like "Do you think Simon liked that?" or "Why is she crying?" as well as just have fun discussing whether the singers were good or not. Ethan usually ends up being a fan of the 'boys'. He really likes David Cook a lot and even did "Light On" at our local amusement park karaoke.

Speaking of singing, Ethan will be singing w/little brother Noah and a friend in the school talent show. They're doing "If Just One Person" from Snoopy the Musical. Just so so so cute. *snuggles them*

Ethan has been doing exceptionally well this year. I think he's made great strides at staying on task and participating in the class. His teacher is great and a big part of it. He's also doing better in terms of emotional outbursts. He has far fewer, and far less intense than last year, but he still relies on his aide for emotional support. The plan is to try and fade his aide out by the end of the year so that he can go to the 4th grade w/out an aide.

The last few months he's had 1-1 training on working on his emotional control. They've worked on a number of things including a system that's based off the The incredible 5 point. In particular, role-playing has worked fairly well for him (vs. social stories - not so much). I really like how the 5-point system simplifies being able to describe his emotional state. I've also used it with his little 6 year old neurotypical brother, who has had some emotional regulation issues. It's a good method to help them take control and responsibility for their emotional state.

The week after we return from break we're going to reduce the number of hours his aide is in the classroom and then see how he does. The IEP team is in agreement that we'll see how he's doing and take action as needed - i.e. provide more 1-1 meetings to work through any issues as they arise. I really don't want him to be aide dependent and I hope that this sort of 5 month slow phase out will work.

In other news, his resource teacher has been working with Ethan on Visualization and Verbalization to help improve his reading comprehension. I've also been working on this area at home with Ethan. I've seen some slow progress, but this will take time and we may not see real improvement until the end of the year.

Reading comp (mostly inferences and 'retelling') is probably the only academic issue he's having this year. All his other 3rd grade academics are A-OK. He gets very good grades and does well on standardized tests (except reading comp). In fact, he qualified for GATE. It doesn't mean anything in terms of extra education right now because GATE activities are pretty much cancelled due to budget cuts. But the program does 'exist' and they are identifying students. Still this may help to justify Ethan's support to be in the general ed classroom in the future.

Ethan's triennial IEP is this year, so there'll be more evals this year. I'm very curious as to those evals and how they'll compare to 3 yrs ago. I'm also concerned about summer school. The last 2 years were cancelled due to budget and we've had to sort of fabricate our own extended school year for him with local camps. I'm guessing the district will have squat again for gen. ed. summer school, so I'll have to look into alternatives.

That's about it for the fall. See you all in the New Year!

Last year I chit chatted about Ethan's love of Halloween but fear of scary decorations (when done to extreme).

So we embarked on desensitization last year and bought a lot of Halloween decorations and encouraged Ethan to touch them and help decorate. So... how's this year going?

Definitely better than last. He still very slowly approaches the Halloween section in Target, but doesn't run away and will look at/touch some of the larger and scarier items.

We went to Great America Yesterday which has Nick or Treat which our kids love. We rode lots of rides (E loves his roller coasters - especially The Demon) and then the kiddos changed into costumes and got to trick or treat w/the Nick characters.




( More about the day and 'Halloween Therapy' under the cut )

Yesterday was the first day of third grade for Ethan. He was very excited and we're very optimistic for the school year. He's got a great teacher and he has four friends from previous years that have been in class with him. He said he had a good day and that they were going to be learning lots of new things this year.

He had a lot of fun over the summer and I also spent time working with him on his cursive and his reading comprehension. The biggest issue right now is making inferences and I plan to do some research to see if there are any techniques for helping children on the spectrum learn to make inferences and predictions. (Besides simply doing practice worksheets w/reading a questions, etc.) I'm looking for something that's more of a systematic program to help build skills for creativity, imagination, and most important: making inferences and using deductive reasoning.

In other cool news, there's this nurse practioners website that likes to create various lists of internet resources for all sorts of different medical resources. They recently put out a “Top 50 Autism Support and Research Blogs” and my little blog here is listed #2 (not a ranking just a happy coincidence of listing). Check it out.

( A few first day pictures under the cut )

We've been having a fun summer filled with parks and going to the pool. Ethan has also attended some summer science camps and we've gone on some roller coasters.

A few highlights: Ethan attended the Joey Travolta Film Camp (for kids w/Autism) and had a blast. It's an incrdible program that allows kids to explore their creative side. I'm a big proponent of having kids on the spectrum integrated with typical peers, but sometimes I think the kids have a need to be around other kids who will be acting and reacting at their same speed. I'm really hoping that he'll be able to do it again next year. We'll be receiving a DVD with the short films (and some behind the scenes as well) and hopefully I'll be able to post a few snippets to share. More info on Joey T and Inclusion films here: http://www.joeytee.com/

In other interesting news this summer... our younger son Noah (neurotypical) had been having digestive woes for quite a number of years. Last year he had lots of blood tests and a GI series and we ruled out Chrohn's and IBS, but still did not know what was going on. Finally, this summer he had the blood tests and follow up biopsy and was diagnosed with Celiac disease. He's now on a Gluten Free Diet. He does not have lactose issues and can happily eat dairy. Of note, we had Ethan tested because of the genetic trend of the disease as well as a slightly higher incidence in kids with autism, despite being asymptomatic. He tested negative, thankfully.

There's been a number of studies that have shown potential genetic relatedness between ASD and Celiac, Chrohn's, rheumatoid arthritis, and other autoimmune diseases. There is also a somewhat higher (about 5% vs. 0.75%, I think I read) incidence of Celiac in folks on the AS. Anyway... Gluten Free food for thought.

I've been doing a lot fo experimental cooking and baking in the GF arena. If anyone has any GF recipes/products that they swear by, send them my way.

At the end of the school year the kids come home with all sort of papers and projects that they worked on throughout the year. I was tickled to read what 8 year old/2nd grade Ethan had to say on a number of subjects. He has such a great brain. I'll share some of his little pearls of wisdom.

When I grow up, I would like to be a Superhero so I can save everyone.
To accomplish this, I will need to go to highschool to learn how to be a Superhero.

WHAT IF?

If I could be an animal I would be a lion because they are strong.

If I could live during any perioed of time in history I would choose the 70's in 1974 because it was a long time ago.

If I could live in any city in the United States I would choose the Big Apple because it is on the east coast.

If I could have any talent I wanted I would choose cool because some people are cool.

If I had all the money I wanted I would get star wars figures because they are are cool.

If I could make one wish for the world it would be peace because it would be nice.
(That it would, Ethan, that it would.)

( wonderful all about me / become president page picture under the cut )
What was amazing about this was that every other child in the class drew themselves as children w/their siblings and parents, while Ethan insisted on drawing his "future self" (which I think makes sense given that he's going to be president).

We were thinking of trying Melatonin to help Ethan get to bed at night. Over teh past few years he's got progressively worse and worse in terms of scripting, talking, yelling, playing - sometimes up to 3 hours before falling asleep. After reading up on some studies showing that a high percentage people on the spectrum have a melatonin defecit and benefitted from taking it , we asked around about it here: http://community.livejournal.com/autism/451036.html.

It's now been over 3 weeks and WOW what a difference since the very first night. He's asleep in 20-45 minutes every night. He very agreeably takes the 1mg cherry flavored sublingal (holds it under his tongue). We started with the low dose so we can always go up in the future. We went with GNC - just because of brand recognition and trust (http://www.gnc.com/product/index.jsp?productId=2133412).

Ethan is on no other medication. If you or your child on the spectrum is experiencing difficulty in sleep onset... it might be worth a try. It's really made a difference in our house at night.

Ten things you can do as a parent to improve your child's behavioral program

Disclaimer: This is not a comprehensive list of everything you can do. This is a list of helpful hints that I've put together based on my own experience with my autistic child having ABA/behavioral programs for the past 5 years. It also incorporates input from other parents and Behavior Therapists and Case Managers that I've met and/or worked with over this journey. As you well know, autism is a spectrum disorder, and the variation of deficits and needs is different and veritably unique for each child, so the most important things for your child will vary. These are simply things to consider.

I really wanted to make sure I got this up before the end of Autism Awareness Month. So here it is. I hope it helps. Please feel free to add your own ideas and suggestions in the comments.

Full post under the cut:
( Ten thing you can do… )

I'm still working on my parents evaluating therapy tips listing - it should be sometime this week (I hope).

But I wanted to share some more thoughts on what I think about ASD research and support. There was an open letter (mostly negative) to Jenny McCarthy on autism and I agreed that she's a dangerous person to have in the spotlight. I said she was diverting focus from the really important issues. I was asked what those were and put down a few thoughts. Full post here:

http://community.livejournal.com/autism/424656.html?thread=3899856#t3899856

excerpt of what I think are important issues:

well... off the top of my head... (this is by no means exhaustive, gospel, or do I have dreams of being the definitive voice, merely giving some food for thought here)

1) National Registry: lobby congress/NIH & the AMA to create a national autism registry. Currently data is very skewed b/c it comes from social service departments but not all people go through them for services/diagnosis/etc. This would create a database to help researchers look at trends, locations, onset of symptoms, severity (a sliding diagnostic scale needs creation for this), etc. This will aid researches in coming up with ideas for research areas.

2) Current treatment cost relief: currently in the US most private insurance will not cover any ASD treatment other than diagnosis, the burden has been placed upon the school district by legal challenging of IDEA, which is a woefully underfunded mandate. Either the federal government need to start funding this better and get the money to the schools or they need to create a separate fun for services, or___________. We need people & money working on the issue of current treatment.

3) RESEARCH of current theories and treatments - I'm quoting an unknown source here, but the plural of anecdote is not data!!! We need real studies with control groups. No it isn't feasible to double blind random trials of behavioral therapies but trials can be constructed with adequate enrollment numbers and controls of neurotypical children to obtain some significant indications to the success markers of various behavioral and/or biomed treatments.

4) Neurology Research- most of the promising finding have been in the research of the neurological behavior, analysis of mirror neurons, identification of regions of the brain associated with ASD and contrast with neurotypical behavior. There needs to be far more NIH grants in this area. We need Mayo, scripps, Hopkins all on it and collaborating with other US and international leaders in the field of. Also, much like w/HIV&AIDS research, we need to inspire the sharing of data across these research centers.

5) Genetic research: We need big NIH funding for autism and tie it in with the Human Genome Project. Additional research is desperately needed in Genetic markers for ASD.

6) Get the private co's involved: B/C there is no potential private market right now for autism treatment (ie. private insurance co's do not cover) there is no big push by private medical research companies to spend money, The government need to create research grants, tax breaks, and other benefits to get these big companies with big money to start investing and collaborating with the Academic Research institutions.

April is Autism Awareness Month

and

April 2nd was World Autism Awareness Day



(link goes to portal of info and world wide links)


BTW: ToysRus is hosting a fundraiser in conjunction with Autism Speaks.


Also... I'm working on a collection of tips for the parent wanting to know how to evaluate their ABA/Behavioral Therapy program. Kinda a Top 10 of things you can do to evaluate and improve the quality of therapy that your child is getting. If anyone would like to submit their thoughts here for consideration, go right ahead.

I blogged a few years back about video modeling, but I think it's worth posting an update.

Many kids on the spectrum are visual learners. They glom onto TV shows and movies. There have been a few studies that have shown a distinct benefit of video modeling for autistic kids. Our own experience with video modeling was quite positive. There are a lot of products out there, but I'm going to talk about the two that we had first hand experience with.

The first is a set of products by Model Me Kids that have been developed specifically for kids on the spectrum. They involve social and communication situations. I really like these videos. I've seen a few other video modeling for ASD kids that used adults as models and found them a bit strange. These videos use appropriately aged children to model. They also have a good running commentary and will often stop the image and highlight the key visual cues.

We own:Time for School™ ,Time for a Playdate™, and I Can Do It!™ , all show a K-5th age rec, but we used the first two when Ethan was 4 and in preschool and I think they were great. I think a preschooler who is in a structured school program and has playdates will benefit from the videos. Ethan watched I Can Do it when he was in K. We've taken a break from them, but I think I'm going to have Ethan watch Playdate and I Can Do It this week for a reminder. I'm also very interested in Model Me's new video Model Me Conversation Cues® - this is targeted for upper elementary and I think Ethan is ready for it. (if anyone has viewed this one please - I'd love to know your thoughts)

The second is set of videos that weren't developed specifically for ASD kids but many have found these speech and language videos a huge benefit. The Baby Bumblebee series is an excellent speech development series. Again these video involve modeling by children in addition to video of actual nouns (eg. a lion for the word lion) and repetitive speech. There are also great flashcards to use in conjunction with it. We used about 8 of these videos. Start with the vocabulary builder series and move on to action words, numbers, colors, and phonics, etc. I've seen these available both new and used on ebay at slightly discounted prices. I've also seen some of these in my local library. These videos are great for toddler and preschool aged kids that are still developing their speech skills.

If someone were to ask me what's Ethan's biggest issue right now, without hesitation I would say Emotional Regulation (and by proxy coping skills). It truly distinguishes him from his peers more than anything else (yes, even the scripting/tv talk -which seems to be used mostly during play/free time and isn't a big hindrance). The fact that he can get so worked up into tears and loud wailing over very small mistakes and frustrations has really held him back in terms of reducing the time he needs an aide in the classroom.

The thing that really gets to me is how no one, repeat NO ONE, working on his case has a single good proactive strategy for developing his emotional regulation. Everything they have in their arsenal of autism education is 100% reactive. Which, yes, is still necessary, as in deep breathing, counting to 10, picture cards that say stay calm, think, etc. All good skills for him to learn, but it's the bandaid. Learning to deal with his emotional outbursts and get himself calm. Nobody has any good ideas for how to reach him so that he doesn't burst into screaming tears because he made a mistake on a math worksheet. At home I've tried to get him to focus on "little things" and "big things" after the fact so he can deduce if he really needed to get so worked up about things (but then again that's still "reactive").

( cut for length - click here for more and video under the cut )

Is this the time of year that I make a resolution to post more??? Sorry, I've been remiss. I do want to wish everyone a happy and healthy New Year.

The holiday season has been fun and the kids have truly enjoyed the food, parties, and presents. We're going to Disney World next week which will I'm sure be chaotic (since it's one of their busiest weeks of the year), but also one of Ethan's FAVORITE places. He's excited to go on more of the roller coasters that a year and 1/2 ago he was to afraid. He wants to do Space Mountain, Goofy's coaster, and Thuder Mtn. RR- I have no doubt he will based on all the other coasters he's done the past year. Even though E does pretty well, I'm still going to city hall to get the guest assistance pass. I don't feel guilty. I posted about this a couple years back... you know what? families w/autistic kids deserve a break, we have enough extra things to deal with that I don't have to much heartache over taking advantage of getting a shorter line on most rides. However, I know we will be waiting in character lines, I think even more than the rides my kids love to meet n'greet the characters. I noticed at Great America this summer that Ethan still (at 7) gets so excited to meet them where as his peers are not so impressed. I'm not sure if that's just personality or the way we've always treated meeting the characters, or some of his added innocence from the autism... and yes, he is innocent.

2nd grade has been going well. We've also had Ethan using the Brain Ware Safari (I posted a bit here: http://community.livejournal.com/autism/396046.html). I'm not sure how much it's helped him, but we've seen his improvement on doing the "games" and OMG some of them are soooo hard. I'd have to sit and practice for days to do some of those upper levels - in terms of memory and concentration. Wow. So perhaps the skill sets are there. There's certainly no negative aspects, and possibly some gains. I would say Ethan's age and development are the lower limit for this software. It's probably more optimal for high functioning kids on the spectrum ages 8-11. Ethan's almost tapped out I think on what he can do, and so I think we're done w/the intensive part and will move on to the once in a while. Perhaps he can try again in 6 mo. - a year to finish some of the other levels. Overall I think it's good software and would rec it (but again for kids pretty cognitively high and a little older).

That's about all for now :)

The kids had a great Halloween- both at school with the costume parade and parties and trick or treating at night. Ethan came pretty far on dealing w/his fear of Halloween decorations. He's still afraid of big display, but he got braver and braver this season. A couple of pics:

Something that I've given a lot of thought to over the past few years is the inevitability of a sibling role reversal. I'm guessing that it's quite common for special needs children with younger "typical" siblings.

Ethan has a younger brother, Noah, who is exactly 2 years younger. Noah is neurotypical and a classic extreme extrovert. He's very social and also very bright. In some ways, he's the worst and best thing that ever happened to Ethan. The best in that he's always pushing to engage Ethan, the worst in that he sometimes pushes Ethan too far. Make no mistake, they are brothers who are very close and love each other, but Ethan needs a fair amount of "me" time and Noah needs "pay attention to me time" - it makes for some interesting conflict.

What I've predicted happening for some time now, has already begun. Noah takes on the role of "older" sibling. He initiates the social contact with other children and brings his brother into it. He also is extremely smart and often help Ethan with his homework. If there is something right/wrong, Ethan has no problem. Things where he has to be creative, "make up" things, or even use predictions and estimations, he has difficulty with. Noah will chime in with helpful ideas.

Part of me thinks this is a good thing, but part of me aches for Ethan's loss as "older brother". I try to give Ethan "older brother" role jobs like unbuckle Noah from his carseat, or to help get Noah ready to leave the house, but as Noah gets older he's going to need his older brother less and less. In some ways, they are like twins (developmentally). Maturity wise, they're not too far apart. They enjoy the same activities and toys, so we truly do so much together. They each have their own friends and identity, but are also extremely close in how we are as a family.

Just thinking.

I have a "thing" about the way holidays are retailized for two months prior to the actual holiday (here in the US). Why is Halloween 2 months long???

Ethan loves the concept of Halloween: dressing in costume and trick or treating, parties at school, candy... what's not to like?

I'll tell you what's not to like: Every store, mall, and restaurant decked out like a haunted house. It freaks him out. He runs away screaming and trembling. Stuff like jack-o-lanterns/pumpkins and small decorations are fine, but these large displays with skeletons, monsters, and witches and not to mention anything that lights up or makes noise by sensor activation are terrifying to him.

We're having problems all over the place. It happened last year and the anxiety has built up even bigger this year. We go anywhere and he asks "are there going to be Halloween decorations?" Poor thing. He knows it's all "fake" and just decorations for fun, but still panics at the sight of it.

So we've decided to desensitize him as much as possible. We dragged him into the decoration display at Target and forced him to look and touch things and pick out things to decorate the house. We bought some of that cobweb stuff and he picked out little rubber skeletons and spiders. Then we picked out two "scary" skeleton things (a head and a pirate skeleton) and made him hold them. At first he held them away but then after a few minutes, he became more relaxed with them. Then we took the play tent and decorated the inside like a haunted house. He helped decorate and then sat inside it. He was nervous at first, but then became more comfortable. I'm still not sure how this will translate to being somewhere and seeing elaborate decorations, but we'll keep on making him get close and touch things. It's really a battle right now, because they're everywhere.

As far as 2nd grade: It's now the 4th week of school and he seems to be adjusting well. He has a regular group of friends that he's eating lunch with and playing with at recess. The aides are supposed to be facilitating his interactions and make sure he's not just wandering around the playground by himself. So far so good. The homework had been very easy (mostly review) until this week. He came home with some math that was logic and reason based problems. Wow - 2nd grade? It was difficult for him to know where to begin. I had to prompt/facilitate on quite a bit of it, but he did okay. He couldn't do it independently. He's going to need a lot of practice with it, but we knew that going into this year. I'll check in w/his resource specialist to see if she's working on that with him.

There's an Autism book I've been meaning to post a rec for and needed to wait until I transfered the blog off of the website.

When Ethan started Kindergarden (2 yrs ago) with the General Ed/PPP (parent participation program). A lot of his friends/classmates families asked for a good book to read to their kids that might help them better understand autism. The one's I've found/read over the past few years I couldn't rec because the child in the story was severely disabled and I didn't want his friends to equate that with him. They were more appropriate to read to a friend/sibling of a child who was non-verbal or had extreme behaviors.

Autism Speaks helped put out a new book that's more appropriate for friends of someone who is much higher functioning. Since We're Friends - An autism picture book -by Celeste Shally (also on Amazon). I found it at our local library and now I'm I've bought a copy to share with Ethan's friends/classmates. The few that have read it so far- the children found it really helpful. Also I showed it to a couple of behavior therapists and they thought it was really good too. I'm trying to encourage the School District Autism folks to buy it too. So for people w/young kids who have contact w/kids on the spectrum, this is a good book.

As an FYI, we have read the book a few times to Ethan as well. He asked "whats' autism" and we read the short sentence in the book about thinking differently, but he said nothing else other than he did like the story. Our suspicion is that Ethan has heard the word autism a lot, but we're waiting for him to ask us more as our cue that he's ready to talk about it directly.

So last week Ethan started the second grade. He seemed really eager and was glad to see all his friends/classmates. A few of his closest friends aren't in the PPP (parent participation program) anymore and are in a different room He told me that he talked to them at lunch and found out what room they are in.

This year (per our IEP) they have cut out his home/private sessions. We will see how that goes for a month or two and I'll call another IEP meeting if we see any regression or issues. He will have the "social skill group" twice a week- 2 hrs after school. It'll be 2-4 autistic kids (same kids as last year for now) and I've got 2-3 typical kids all lined up to participate each of the groups (5-6 kids total). I must say for the record, I love the families at our school. They are so awesome and open and the kids are great. I hear horror stories (pretty much any other school in our district) that they can't get typical kids for play dates/play groups. I've got a ton to choose from. I feel so lucky.

Speech and RSP is supposed to start next week. Same RSP teacher. The speech therapist (not certified and ESL was quite unpopular- nice woman, but lousy therapist) quit and the district has contracted someone. We don't know who yet and we all anxiously await to find out if she's any good.

I'm taking a wait and see mode with how all the services go this fall and also his 2nd grade teacher. She doesn't have the best reputation among the parents. People have the impression that she's a bit lazy/punching the clock. I've met with her and am trying to be optimistic. He has the same aide(s) for now, so that's stable.

( A few pictures under the cut )

I've decided to blog more often regarding my son Ethan, who has autism. He is in the second grade and fully included. He has been since kindergarden. I'd like to share more of my expreriences and felt that this format would be easier to update. I'll still keep the website, all of the info, links, previous entries, etc., but will be actively blogging here. Please join LJ if you don't have an acct and add autismblog as a friend, if you would like to follow along :)

The website is here: The Autsim Blog