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

I used to love sleeping. Especially when you can fully stretch out and most especially on clean sheets.

Now I have at least one night a week of sleep interrupted.

It’s that kind of interruption where you wake up, sometimes in a panic. There’s a problem, and I have to fix it. How do I fix it? Oh yeah, I can’t. But the worry remains, because the problem remains.

Hamhock is attending preschool this fall. It’s in a neighboring school district (Granite) and will be mostly neurotypical kids with a few extra-needs kids with IEPs.

I’m terrified.

Considering his social skills consist mostly of hitting, pushing, shoving, grabbing, and yelling, well, no wonder I’m terrified. Basically the entire year will be focused on helping him develop some appropriate social skills, with the goal of not terrifying other kids in his class.

It’s hard when he physically doesn’t appear to have any disabilities – because it doesn’t engender sympathy as a first response. Think about it. When you see a Downs Syndrome kid, you immediately understand that something is amiss. When you see my kid, you think his parents don’t know how to discipline, or that he’s just being a jerk.

The worst combo is when my kid is terrorizing the Downs Syndrome kid. I’m not joking. He was in an Early Intervention play group twice a week when he was two, and I was terrified of leaving him there with a really sweet Downs girl. He did get close a couple of times, but no major damage was inflicted. Whew.

On May 27, I was horrified to hear about Alex Barton being voted off of his Kindergarten class; any parent, whether with a special needs child or not, cringes at the thought of their child having a traumatic social experience in the schoolroom or schoolyard.

Along with hundreds of concerned parents, I sent an email to the administration and teachers, as well as St. Lucie’s mayor:

———- Forwarded message ———-
Date: Tue, May 27, 2008 at 10:44 PM
Subject: Ms. Portillo’s Terrible Decision to “Vote” a Child out of Class

Ms. Portillo, Ms. Cully, Mr. Lannon, Ms. Hilson, Ms. Miller, Mayor Christensen, Ms. Hanna, Ms. Campbell, Ms. Constantine and Ms. Spurr:

I am shocked and horrified at the events surrounding Alex Barton being “voted” and “kicked out” of his kindergarten class led by teacher Ms. Wendy Portillo. This incident is so horrific on so many levels, it is difficult to simply articulate a response.

Public school education is a right, protected by law. Children with developmental and other disabilities are protected by law (IDEA 2004) to have access to an appropriate public school education.

How could ANY public school teacher set an example to others of ridiculing a 5 year old child in this manner, and then allow the children to provide such negative and destructive feedback, especially to a child who has social delays and difficulties? Not one of them has the authority to decide where he should or shouldn’t receive his education.

Ms. Portillo will recover from her temporary removal from the classroom; but Alex Barton is forever changed by this one incident in her classrom.

As a mother of a child with an autism spectrum disorder, I fully understand the frustration surrounding behavior difficulties of children with ASD, especially when they are in large structured groups. It sounds like not only did Ms. Portillo fail him, but also the special education department for not providing a more structured and supportive classroom setting for him, as well as the administration for failing to support Special Education efforts for this child.

Now is the time for you to change your practices and policies. Now is the time to make right a horrible event under your watch.

———–

Another story that keeps me awake at night. . .

Oh. My. Word. Of course I don’t know all of the details of this case; and especially how much or how little the family was trying to work with the church’s leadership, but again: Oh. My. Word. A restraining order? Any parent of a child with autism already feels aliented, so to have that feeling of alienation legally cemented by a restraining order??

Hamhock has hit other children at church. He runs all the time, completely unaware of other parishioners, and 75% of our congregation is over 70! He loves to spit at other kids and adults. The only thing he hasn’t done in the church that this autistic boy is accused of doing is pee, but I’m fairly certain he has peed in the bushes on the church grounds after services.

Now, Foo & I follow him around everywhere he goes. We don’t let him out of our sight, unless he’s in his Primary Sunday School class, and even then we keep tabs with his teacher. Sacrament services are still a challenge, and we’re usually in another room or roaming the halls. We’re cognizant of other people; for of course everyone has a right to worship in a spiritual manner. But I can just relate to this mom wanting to have some semblance of a normal family experience at church, when there is probably very little in our lives that feels normal.

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).

Who’s Laughing?

June 15, 2008

Hamhock laughed hysterically both times I took him to see Horton Hears a Who.

It arrived this week at the dollar theater, and dollar movies are FABULOUS movies to take kids to. The seats are crappy, the sound even worse, and when you go at 1 pm in the middle of a weekday, and the whole theater is full of kids, you don’t have to worry at all about your own kids interrupting someone else’s $1.25 movie experience.

It’s great for a mom with a kid with autism (who doesn’t have serious sensory issues).

I noticed, though, that Hamhock REALLY laughs at the visual gags. When the monkeys are blasting Horton with the bananas, Hamhock has a belly laugh that encompasses his whole body and soul. I remembered exactly where he laughed last time and joined right in with him this time.

I didn’t notice other kids laughing as much. Even Superboy laughed a little or giggled, but that belly laugh? Nope.

It always begs the question for me. Is it the autism (because he’s focusing on only one aspect of the visual and that aspect tickles his funny bone) or is it really his personality, and simply no one else in the theater that day has that kind of personality?

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.

Mad at you

May 14, 2008

Hamhock: “Mom I’m mad at ya.” (He’s recently been using the casual form of “you.” It’s so cute.)

Me: “Why are you mad at me?’

Hamhock: “‘Cause you did something.”

Me: “What did I do?”

Hamhock: “I don’t know.”

A few minutes later he said he wanted to pump some gas in the car. So I inferred this was the reason he was mad, because earlier when we drove by the gas station and he asked, I said we had enough gas in the car and didn’t need any more.

Backstory from today: While driving through Sugarhouse to the post office, Superboy was pointing out all of our local stomping ground attractions: the food store (Wild Oats), the li-barry (Sprague branch), the train store (Barnes & Noble), the bank (Wells Fargo), the post office (USPS), and a gas station (not the one I go to, so I don’t even remember the brand).

When Hamhock saw the gas station, that reminded him that he wanted to pump some gas. He probably was especially sensitive because we went to Pep Boys yesterday to buy a brake light and some antifreeze, and I wouldn’t let him help me pour the antifreeze b/c I wasn’t sure how much and I needed to figure out the whole 50/50 thing.

So when we got home I let him go ahead and help pour some antifreeze in. I think he was happy after that.

I am particularly impressed with the above conversation, because he actually answered a “Wh-” question. Usually he doesn’t answer. This was one of the first times I’ve heard an answer. I loved how he also said “’cause” instead of “because.” That, combined with the “ya” makes me feel like he is getting some texture to his conversation – it’s not just rote, robotic language. That’s a great thing in the world of autism!

Later on, after Anya was done with his ABA session, he wanted to bike home with her. In complete earnestness, he said to me: “I’ll come back for ya” and gave me a big good-bye kiss with lots of smack on my lips. Har! Usually he doesn’t move his lips much when you give him a kiss, so it was particularly sweet how intense he was about biking home with Anya.

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.

Suppository Fun

April 13, 2008

Ugh. Not so much.

Hamhock’s Heavy Metal Toxic Urine test showed he has high levels of lead and tin in his body, so we are starting the chelation process. It’s a compounded medication that binds the metals to itself and then helps Isaac poop and pee those darn metals out. Bad bad heavy metal! I guess Leadman would be the right song instead of Ironman (those trailers are crazy! Can’t wait till May 3.)

So. . . we had 3 options to administer the medication: oral, creme, or suppository. The oral medication, which would be the easiest (because Isaac freaking SWALLOWS pills now – at 4 1/2! I’m still completely amazed) also causes the most GI side effects. The creme is the most expensive. So, I opted to try the suppository to start with. You should have seen the pharmacy tech give me the info on that. I’m more worried about inserting it high enough, but not too high, he thought I was worried about the poo aspect. Um, not so much. I’ve been changing poopy diapers straight for 4 1/2 years now (hoping Superboy will potty train this summer). Poop I can handle. Hurting my kid’s bottom not so much.

So the first night, Friday, went off without a hitch. I inserted the pill no problem, Hamhock was fine with it. I told him not to push it out, as the pharmacist said that there might be that urge. Well, I guess I forgot to tell Hamhock the next morning that it’s OK to go poop, that the medicine is all gone now because I have no idea if he went poop all day! He ALWAYS goes poop before bedtime, so last night we were brushing teeth, and I told him to go poop so we could put his medicine in, but he couldn’t go. First time the kid’s been constipated since he was a baby.

Great.

He said something about the medicine coming out, so now I’m worried he didn’t go poop all day. His tutors were with him all day, and then Mark took care of the boys when I left for work at 2, so I have no idea. Ugh.

So . . . I tried to insert the pill, only to discover that it won’t stay in, and it felt like there is some poop sitting there in his large intestine. Fabulous. He won’t go poop and asked to do the medicine tomorrow. I even tried a few hours later after he was asleep, thinking he’d be more relaxed. Nope. Same thing.

This is my life. We’re supposed to do one pill per day for 3 days. Then 11 days with nothing, then start the process again. I only have Friday, Saturday and Sunday nights off, so if I skipped Saturday do we do it Sunday and Monday? I’m sure Foo would rather watch Grease Lightning over and over than put a suppository in. We’ll find out what Dr. Humpherys says on Monday.

Needless to say, I’ll be switching to the creme for the next round.

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.