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.


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.

Where was I built?

July 25, 2008

Omigosh! Hamhock just asked THE question about where he came from. He’s 4 years, 8 months.

I was putting him to bed when Foo came up after putting Superboy to bed, and we began telling Foo about swimming at Fairmont today and how both boys stayed in the warm shower in the dressing room for probably 25 minutes.

I can’t remember what preceded it, but out of the blue Hamhock asks: “Where was I built?” I responded, “You mean how were you born? Well, let me show you.”

And I brought out the photo book I just recently finished with Hamhock’s Adoption Story.

He was really interested in his first bottle and wondered why we gave him milk. He didn’t pick up too much on Roxanne, or the fact that he was in her tummy.

That’s been one of the things that has been hard for me since diagnosis, is that he has been no where near emotionally/cognitively to understanding or caring about being adopted. THAT’S the challenge that I thought we’d have – adoption and being African American.

Autism trumped all that.

Until now. The first conversation about his birth story. I loved it!!

My beef about the blame

June 20, 2008

I just have to vent my beef about the article in Time Magazine on May 21: How Safe Are Vaccines?

Let me state that I believe that both sides of the vaccine debate are actually right.

(Isn’t that true about many things in life – that people’s experiences aren’t black and white, that your experience may be true even though it is completely different than my experience?) It would make sense to me that there are those cases of autism that are purely genetic, where that child would be autistic no matter when in history, or no matter what environmental factors are present. On the other side of the coin, though, I think there are also those cases of autism that are affected or made worse by environmental factors. How else could we have an “epidemic” of a ‘genetic’ disease? Such an “epidemic” is not possible, yet here we are.

Either which way, I don’t believe parents of children with autism are responsible for cases of measles outbreaks! Geesh!

The article states: “it’s possible that once rampant diseases such as measles, mumps and whooping cough will storm back, even in developed nations with robust public-health programs. That is forcing both policymakers and parents to wrestle with a dilemma that goes to the heart of democracy: whether the common welfare should trump the individual’s right to choose.”

First of all, humanity will never be able to eradicate the bacterium or virus that cause the world’s diseases. They will always exist. The best we can do is protect ourselves from them. So, just because a parent with a concern for their child’s ability to handle vaccines doesn’t vaccinate, (whether that be autism or something else), that doesn’t mean that they put in jeopardy the world’s plan for eradicating the disease, because that plan is impossible.

In my opinion, the only people who are in jeopardy from parents who don’t vaccinate are their own non-vaccinated children, because they INDIVIDUALLY are not protected. If you protect your children by vaccinating them, then your children are NOT AT RISK. If there is an outbreak, and you have the vaccine, then you’re fine! When parents sign the dotted line denying a vaccine, then they are assuming the risk that their child may catch the disease. That parent signs acknowledgment that they are putting their children at risk for that disease. They aren’t signing that they put other children at risk, only their own. It’s that simple. I’m not putting other vaccinated people at risk, just my own. I am however putting other non-vaccinated children at risk, but their parents already assumed responsibility for their risk. If an adult is worried that enough children are not getting their vaccines to create adequate herd immunity, well I think that adult should go get the vaccine/booster themselves. A full-grown adult shouldn’t expect a child’s herd immunity to protect him or her. If your child is immune-compromised, too young, or for some reason can’t get vaccinated, well, you would have to be careful about everything that they could catch, and you wouldn’t want to travel the world with them, among other things.

It is wonderful that we have vaccines to protect us from life-threatening diseases. But shouldn’t I have the option to decide whether or not I consent to put anything into my body or my children’s bodies?

The article also then states by the end of 2001 thimerosal was removed. That’s not true. It still exists in trace amounts as indicated on the current CDC website. The Health Advocacy in the Public Interest tested 4 vials of vaccines in 2005 and discovered that that the vaccine manufacturers use thimerosal in the production of the vaccines, and then remove it. But it is not possible to remove all of the thimerosal because mercury binds to the antigenic protein in the vaccine and cannot be filtered out completely.

It bothers me that our culture of fear and blame is perpetuated in articles like this.

And it bothers me that parents who are already dealing with so much struggle in their lives are blamed for outbreaks of measles. Geesh. Of course I don’t want any child to die by any disease, but death by measles is only 2 or 3 per 1,000. Why do we sacrifice between 6 -12 kids per 1,000 to autism to save 2 or 3 children from measles? Let’s save ALL of these children! A safer vaccine schedule is all it would take (except for the child who is predisposed for autism caused 100% by genetics, which throughout history is nothing we can do about).

I’m sitting in the children’s section at Barnes & Noble leafing through a newly published, oversized book called Autism Heroes. Superboy is so cute and playing with the Thomas the Train set. Hamhock is at home in an ABA session with Anya.  The book profiles stories and has great photography on various families throughout the country who face the challenge of autism in their lives.

I flip open to the first family’s story and I see Gary Cole looking right at me. You remember Gary Cole – the office manager in Office Space, Mike Brady in the Brady Bunch movies? His daughter has autism. I keep reading and finally flip to the back of the book where I see John Schneider. His picture is a great snapshot – he’s sitting down with his pre-teen daughter on his knee, his wife is standing next to their son who has Asperger’s, and the smile on John’s face is so happy, so natural. Anytime I see John it reminds me of those lazy summer days in the 80’s watching Dukes of Hazard, and I choke up with regularity watching early seasons of Smallville when scenes show John and Martha raising Clark as their son through adoption (albeit alien adoption from Krypton).

Both actors are very open about their children living with autism; they both work with non-profit organizations: Gary works with the Help Group, and John is on the advisory board for Actors for Autism.

It’s crazy to me that when you see a celebrity in a personal situation that you kind of feel like you know them. But you’ve never met them, and the people they portray are just characters, oftentimes absolutely nothing like their true selves. That said, there is some sense of familiarity when you see their face.

Last night I went to my niece’s ballet recital at the U (so freaking adorable; and she did great!), and as I was weaving around the parking lot looking for a space, my eyes were drawn to all the families going to some game at the stadium. Of course, the lack of sleep and constant emotional state I’m in, made me start crying whenever I spotted a family with kids about Hamhock’s age. I can’t imagine just taking him to a game, holding his hand while we all walk there together, anticipating a fun event. No. Everything we do has to be planned in advance, we can’t take him to most normal places you would take a 4 1/2 year old to.

I have to keep believing that someday, someway, somehow we’ll get there.

I guess Foo & I haven’t quite “accepted” the autism yet.

We’re still frustrated, angry, grumpy, tired, stressed, stretched thin, worried, anxious.

I remember meeting families with children with special needs in the past and thinking: “Geesh, just quit worrying about it so much.”

Now I understand.

There’s a problem, so all you do is worry. Maybe you stop worrying when you’re older, when “nothing more” can be done, when you’re dead?

It’s not just “the diagnosis.” It’s your kid, your life, everything you ever wanted, expected, desired.

Also the challenges created by the autism make life difficult now. We are working so hard to make things better, easier, more enjoyable to live.

But for now, we struggle.

Foo took the boys to a neighborhood girl’s birthday party last night while I was at work. Cool parents, sweet girls. But anytime Hamhock is awake, we have to be “on.” We have to know where he is, what he’s doing, and especially when he’s around other kids we have to be vigilant to make sure that he doesn’t hurt anyone too badly.

So, Foo was exhausted keeping him from destroying the house, from pulling the girls’ hair, from terrorizing the toddlers, and from sneaking contraband food. Foo was worn-out, as well as sad, that he couldn’t be like the other dads, just enjoying their evening, not running around after a 4 year old with autism, enjoying a relaxing moment in life. It also doesn’t help when they look at him running around, and he feels as if they’re all thinking: “why aren’t you just sitting down and enjoying yourself?” Or maybe worse: “I’m glad that’s not my life.”

I just want my child to have a full life. I want to share that life with him. I want happiness and enjoyment in that life. I hope that someday, someway, somehow it will be ours.

Right now, not so much.

Hamhock just figured out how to unlock the front door, and made a mad dash outside yesterday. You can call and call to him, and he doesn’t care – he’s off and running/biking down the street, so you have to throw on your shoes and RUN. I flipped the front door knob around so now I can lock the door with the key from the inside. The deadbolt still locks so nobody can get in from the outside.

There is constant whining and verbal tantrums, and Quiet Sittings help to calm him down, but mostly he has to do it when he’s ready or forgotten about whatever upset him. Basically, taking care of both boys is an exercise in enduring lots of whining and crying throughout the day.

Working to pay for ABA doesn’t help. . .Foo & I only see each other on Saturday and Sunday nights. Even then, I get off work at 8 pm on Saturday night, but do a 4 hour shift on Sunday morning at 5 am. So, I can’t really relax. Sunday night you have to start getting mentally ready for work again. During the week Foo works days, I work nights. We see each other only in passing.

I have to remind myself when I’m feeling down that there are amazingly adorable and sweet things that brighten our moods throughout the hard long days. Both boys are so physically cute, that it’s so fun to kiss their pudgy cheeks (both ends!), or tousle Hamhock’s locks of curls, or pat Superboy’s naked tush (often naked due to potty training), or tickle their underarms. My favorite thing about both boys is to get them to laugh. When they smile or laugh, all of my life has meaning and complete joy in that one precious moment in time.

Batman and Robin

They are hilarious with their love for super heroes. . . Superboy complete with his songs about Superman, Batman, Wonder Woman, the Flash, Green Lantern, Hawk Girl, Green Arrow, and John Jones. Hamhock’s face today lighting up as he played with his new Ironman mask and disc thrower, or Superboy’s focused attention on his new Superman figure fighting off Darkseid.

It’s so interesting how Hamhock has gravitated towards Batman, and Superboy towards Superman. I’m all too happy to be assigned the role of Wonder Woman, because I still think she’s as awesome as I did when I was 5. It’s so great that she is so beautiful and feminine, but is as tough as the big boys, and can completely hold her own.

To my two little superheroes: life may be challenging, but you make it all worth it!

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.


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.