Autism Conference!

September 30, 2010

“Putting the Pieces Together”
Autism conference hosted by Spectrum Academy

November 11 – 12, 2010
9:00 am – 3:00 pm

Utah Cultural Celebration Center
1355 West 3100 South, West Valley City

Click here to register

1 in 100. Yikes.

January 16, 2010

The CDC released its latest autism figures just a few weeks ago (December 18, 2009).  Their current findings indicate that Autism Spectrum Disorders (Autism, Asperger’s and PDD-NOS) now affect 1% of children in the US, or 1 child out of every 100.  This shows an increase of 60% from 2002 – 2006.

Yikes.

David Kirby of the Huffington Post, conducted a phone interview with Dr. Thomas Insel, Director of NIMH and Chair of the IACC (Interagency Autism Coordinating Committee) to interpret the CDC’s findings.

The highlights of his interview are:

1.  Better diagnoses do not explain this huge increase.
2.  The causes are both genetic and environmental.  “There is no question that there is an environmental component here.” – Dr. Insel.
3.  Finding environmental exposures that trigger autism are essential in order to decrease the epidemic.

Let’s hope those in positions of power and science and medicine can figure the solution out.  Soon.

So far success at preschool!  WAHOO!!!

Mrs. Riley said Hamhock did great for his first day of preschool last Monday.  She even said she wouldn’t have known if he had any sort of delays.  He’s following directions, engaging in activities, sitting still for snack time.  (And it all reinforces my theory that kids act MUCH better for other people than they do for their own parents.  It seems because kids are around their moms a lot more, moms seem to get the brunt of bad behavior, but Foo of course gets a strong second for bad behavior from the boys).

When Hamhock was 2 1/2, right after diagnosis, he went to a little play group with the Early Intervention Program in SLC twice a week.  When I’d come to pick him up, he’d look right past me and run out the door, ready to move on to the next stimulation.

The very first day at preschool, now 8 weeks before he turns 5, and after 20 months of intense ABA Therapy, when I came in to pick him up, he looked right at me, ran over and gave me a big hug, and held on for a few seconds.  IT WAS GREAT!  Then we gathered his backpack and artwork and headed outside to play on the playground for a minute with Superboy.

Then, one of the boys in his class yelled out “Bye Hamhock!” as he was leaving with his mom, and Hamhock got the biggest smile on his face and ran over to him to say bye.  OMIGOSH.  It was amazing.

He’s got one full week under his belt, and has done great every day.  His teacher is very organized, has a great schedule, and is very consistent with rules, so I think it’s helping him know what is expected of him.

Superboy goes twice a week in the afternoon class, and of course loves to go.  They both love to bring their backpacks, and hang them up under their names, but they don’t even know what their backpacks are for!  (The teacher wants a change of clothes in there in case they accidentally wet themselves).  So cute.

“Oh my gosh!”

April 27, 2008

I absolutely love it when I hear Hamhock say things that he’s heard me or Foo say. Today we were playing in the laundry room, Hamhock was crawling back and forth on top of the dryer and washing machine looking at the spiderwebs on the ceiling and wondering where the spiders went, while Superboy was playing with the lint catcher calling it a “bridge” by perching it in between both machines.

Hamhock was saying something to Superboy, when he exclaims: “Oh my gosh! You have to trust me.” This, coming from a kid, who just over a year ago could only say a handful of words.

They also got out the white icicle Christmas lights and plugged them into Superboy’s bedroom. Superboy started dancing around saying “Jesus, Jesus, Jesus, Jesus!” Hamhock got down on his knees, folded his hands together and said a prayer to Heavenly Father “in the name of Jesus Christ, amen.” Then he asked: “Is it almost Christmastime?” Sorry sweetie, we’ve got a ways to go before Christmastime.

I’ve also heard Hamhock repeat my “Dangits!” That’s a funny one. Thank heavens I haven’t let anything worse slip out.

Foo was watching a Justice League movie (Starcrossed) with both boys, wherein the Green Lantern conjures up a big green axe with his lantern ring, so he could fight off a evil/misguided Hawk man. He says to the Hawk man: “Kiss my axe.” So when Hamhock repeats THAT it comes out “kiss my ass.” Yikes.

Another funny pronunciation story took place in church. Superboy, like most little kids, can’t pronounce his “r” very clearly. So, when he says “hurry, hurry hurry” it sounds like “hooey, hooey, hooey.” He was playing with Percy the train from the Thomas the Train series on the church pew, and started saying (and I’ll write phonetically): “Pussy, Pussy, Pussy!” Big Yikes!

We had to perform surgery on Buzz Lightyear and Superman today. Buzz’s hand was severed at the wrist, and Superman lost his lower right leg, severed at the knee cap. I brought out the glue gun (although it really doesn’t hold for stuff like this) and let Hamhock have at it. He loves it – thinks the glue gun is very cool, and tried to glue everything he could before I’d stop him.

After 20 minutes of glue gun heaven, he says out of the blue:

“This pew-pew gun is awesome!” (You have to read pew-pew like the sound lazer guns make).

I just love to hear these exclamations from him – where did he hear that word awesome? I don’t know. He doesn’t say it all the time, and so when he says something like that effortlessly, completely in context, it just makes me stand in awe.

See my new shoes!

April 24, 2008

“I have new shoes!”, exclaimed Aiden.

“I have new shoes too,” replied Superboy.

“Oh,” commented Aiden.

“My shoes got broken,” clarified Superboy.

I constantly marvel at neurotypical exchanges like this with my 2 1/2 year old and his 3 year old friend. There was such a level of comfort and ease in the exchange, both boys looking right into each other’s eyes. Aiden was excited to share, and Superboy commented appropriately in context. They had a little conversation about something important to them, effortlessly and enjoyable to both.

Hamhock usually doesn’t know what to say when a child looks at him and comments on something. He usually grunts and says “no!” and pushes past them to go find the toys in their house. I am so amazed that my little boy talks at all; just over a year ago we were still deciphering agoo talk. He is very physical and likes to push, shove and wrestle. Who can blame him? When he doesn’t “get” what to say, how to say it, or what to do, then little boyhood testosterone takes over. It does break my heart, though, when neurotypical kids say something to him and then just stare at him when he doesn’t answer. They aren’t quite sure what is wrong, they’re just wondering why he doesn’t answer back like everyone else.

Someday, someway, somehow, we’ll get there.

I love you Jon Stewart!

April 15, 2008

Thank you for donating $50K of your own money to Autism Research & Education. Wahoo! You’re awesome for producing the “Night of Too Many Stars” – so freaking hilarious.

My favorite sketch from last year was Jack Black singing his “It’s Autism’s Time to Shine” opening song. This year’s song with Ben Stiller was fun, too: “They didn’t start Autism, but they opened their wallets for Autism education.”

My favorite sketch this year was Tina Fey’s boob holding . . . The hand on your boob, the smile on his face, it was priceless. Foo and I have loved you for years.

Also Gay Stephen Colbert had me rolling on the floor. Omigosh, the crotch shot in the relaxation room – har! Recently becoming a Larry David fan, I loved his tirade about the premiums. And of course Will Ferrell as George W., Steve Carrell eating a whole chocolate cake, 6 gin & tonics & cough syrup, and Fred Armisen as David Paterson – great stuff. And yes, Amy is over-playing Hillary, but it’s still funny. I loved when she was just saying Russian-like words pretending to speak Russian.

My only frustration with the broadcast is that the video clips they showed of children who attend the programs with the New York Center for Autism Charter School mostly seemed examples of children with “stereotypical autism,” or children who maybe had other problems in addition to their autism.

An example: one mother said having her child learn to blow out a candle when he was 7 years old was a huge happy milestone for her. I’m not sure what other problems her child has, or whether his autism is very severe, but Hamhock wanted and learned how to blow out candles when he was 2.

I don’t like that these video clips will continue to perpetrate the myth that to be diagnosed with an autism spectrum disorder, you must do “stereotypical” things. While there are many that ARE indeed severe, including being nonverbal for their entire lives, there are also many many stories of children on the spectrum who are recovering from some of the markers of autism. It’s these more subtle signs and symptoms that need to be educated to the general public so that more and more kids will receive early intervention, because parents are more informed.

I’m so glad that the New York Center for Autism is in collaboration with Autism Speaks (and others) to encourage research into the causes and cures for Autism. That said, I’m not sure why the benefit was entitled “. . .for Autism Education.” That sounds to me like it is just for one educational program at the NYCA. Hopefully the website is accurate, that NYCA works with Autism Speaks and other think tanks to further research, which would benefit many more kids than just those attending the school.

So, thank you, Jon, Stephen, Gay Stephen, Steve, Tina, Larry, Fred, Amy, Will, Will et al.

Walk for Autism

April 13, 2008

Well, cool. The first ever Walk for Autism in Utah is being held on Saturday, May 3. Go Autism Speaks! I also love Toys R Us, that they are the 2008 National Walk Sponsor.

Of course, I don’t have enough energy to assemble a team, but Superboy & I will go to Cottonwood High School to support the walk while Hamhock is in his ABA that morning and Foo practices rocking it out with his band.

RDI vs. ABA

April 8, 2008

July 2006, AD (after diagnosis): I did all of my research, weighing in all our options for which therapy route we were going to take. My gut was telling me, actually shouting at me, that 2-3 hours of ST/OT with EI were not addressing the real, underlying issues. The special ed preschool, for only 2 days/week, 3 hours/day, would likewise do nothing (and I knew to get more it would be a fight with the SD the entire way). The local autism school had a wait list over a year long.

We didn’t want to wait.

We got an in-home ABA program up and running within 3 months. The first day of training I knew it would address Isaac’s needs. Within a week his head-banging tantrums stopped. He was more manageable at home. He started slowly learning words – some of his first were “no,” “baby” and “bye.” He started using 2 word sentences six months later. And now, after 18 months, he speaks in full 7, 8, 9 and even 10 word sentences. He answers questions (mostly yes/no – doesn’t quite understand “w” questions yet), he comes up with his own original ideas, he says the funniest things: “I have an idea,” “I want to show you something,” “It can be so beautiful” and more.

But. . .about a year into our program I became VERY depressed. I had tutors who had car problems, stomach ulcers, etc., and so I would be left with days without therapy sessions. What do you do? We’d go to the Children’s Museum, play at parks, outings with friends, but it was all wasted time. In the fall his spot at the local autism school came up (16 month wait list), but its ABA wasn’t what mine was, not as much one-on-one, and he would be the hard to handle aggressive kid in the classroom, and I didn’t like how the tutors I observed couldn’t handle the aggressive kid in the classroom. So, we plugged along with our in-home program.

For the past several weeks, I have been getting that nagging feeling:  “It’s not enough.” The down time with me at home is not helping his development. I need to do more with him. Now his ABA sessions are fraught with aggression, gazing, and stall tactics. It’s not getting to the core of his deficits. It’s helping his behaviors improve, but not to the core of the autism.

Thus enter RDI. I’m thinking of switching our entire program over to RDI. My ABA consultant is almost certified RDI, and from all that I’ve read, it helps address the emotional centers of the brain that ABA doesn’t or can’t dig down into. It addresses the WHYS of behavior, not just the behaviors themselves.

That said, I’m scared to death that I’ll be too tired, depressed, and impatient to do it. But something else needs to be done. I feel it deep down.