Social success story

Our June meeting will feature Angela Gaither-Parker ("Miss Angel" to her kids), director of The Autism Project, who specializes in teaching social and life skills. Participants in her programs range from preschoolers to young adults and are all over the autism spectrum. My family has worked with Angel since our daughter Leah was 4, and my description of what Angel brings to the table is pretty straightforward: She really gets autism.

Recently Angel shared a story about one of her longtime students, a teenager with fairly low language, but some excellent skills in other areas:

On Friday night I went to watch X (a student of mine for over 12 years) perform in a Choral Department performance at Calvert High. I watched in amazement as he participated in the program with his typical peers without any assistance or sign that he was different. He led a rap of MC Hammer's "You Can't Touch This", danced the "Achy Breaky Heart", sang several lead verses of other songs and had many typical girls from his school screaming his name. It left his family and I crying tears of joy. (And for those of you who know me well, I rarely cry).

While X will not graduate from high school nor will he ever drive a car, there were no signs on this night that he was any different from his peers. He was cool! And I mean, really cool. He was so proud to be with his peers and without any assistance. He was just a teenager with his friends.

I know nowadays that everyone has their eye on a high school diploma as the big prize. I am here to tell you that his family and I would never trade what we saw on Friday night nor what we have in X right now for a diploma. No way! X has a job that he works with other typical people and requires no assistance at all. In fact, they have recently increased his hours and are giving him even more responsibility. He is well liked and admired by those who work with him. He participates in social activities anytime, anyplace with whomever. He just likes to be with others.

My point is simple: X is a success. Different - but a huge success. He should be a shining example that life doesn't end if you don't get a diploma.

One of the other things about X that blows me away is that he's able to let himself in his house after school, make a snack, and entertain himself safely until he gets ready for work. I fantasize about my daughter acquiring that ability. Angel has quite a few students whose language skills and academic skills are stronger than X's, but X is right at the top of the heap with his job and community skills. His story reminds me that all of our kids, diploma-bound or not, need life skills. So do their neurotypical siblings, for that matter. Think about it -- how many of us have worked with fellow neurotypicals who drove us bonkers with their questionable work ethics or negative attitudes? Not a problem for X.

On Sunday, Angel will talk about the importance of social and life skills, and how she teaches them to her students. No matter where your child falls on the spectrum, this is a presentation you'll want to hear.

-- Alison Hamilton

'Journalism' on the Today show

My expectations are never high when I watch a Today show 'exclusive.' Newsreader Ann Curry can barely read a teleprompter. My husband and I would have created a drinking game out of her hard news reaction -- she furrows her brow, nods, and says, "Mmmmmmmmmmmmm," when the going gets serious -- except that she is on the air at 7:00 a.m. and we aren't in college anymore. Matt, Meredith, and Al are affable, but let's face it, their jobs require gravitas one day and broadcasting in Halloween costumes the next.

Overall, my hopes were not high for Dr. Wakefield's interview this morning. I was disappointed, but not surprised, by Matt Lauer. He had a script and he stuck to it. Was he that constrained by time, or is he, like many journalists, so uncomfortable with science topics that he can't improvise? Dr. Wakefield brought up the vaccine court cases the government has settled not once, but twice. The follow-up questions were practically dancing in front of Matt's teleprompter wearing gold spandex and fishnets and Matt left them hanging. Ask him what he means, what cases he's citing, if he's claiming the government is lying. Whether you think Andrew Wakefield is a genius or a quack, ASK THE QUESTION. Journalism 101. Reporters can bore you to tears about it.

Unfortunately, the cornerstone of American journalism, objectivity, was also lacking. The pre-interview piece included comments from British journalist Brian Deer about Dr. Wakefield's alleged conflicts of interest related to his GI studies. For the moment I'll concede that there is not sufficient time on the Today show to examine everyone's conflicts of interest related to vaccines. However, since they used Deer as their talking head and mentioned the Sunday Times stories he wrote about Dr. Wakefield and his case, they should also have mentioned that Deer is one of the people who initiated the complaint against Dr. Wakefield in Britain. In the United States, no one worthy of the title 'editor' would have permitted Brian Deer to write news stories about a complaint he had a hand in filing. He would have been nowhere near that story. So which is more inexcusable -- knowing about Deer's conflict of interest and leaving it out, or not knowing, because you didn't vet Brian Deer thoroughly before you quoted him?

The possibility that researchers will shy away from asking the legitimate questions that still surround vaccines is the saddest possible consequence of Dr. Wakefield's fate. Hopefully his quote at the end of the interview will invigorate his colleagues: "These parents aren't going away. Their children aren't going away. And I'm most certainly not going away." We still need more study and more answers.

-- Alison Hamilton

P.S. Watch the interview, below:

Visit msnbc.com for breaking news, world news, and news about the economy

A bad way to handle a bad day

At a coffee talk meeting recently, a parent asked for feedback about her elementary-age son's current school placement. In sharing background information, this parent disclosed that her son's previous school had a habit of calling her on his bad days and asking her to pick him up.

I wish I could say that's the first time I've heard about a school team handling bad days this way, but unfortunately, it isn't. And it sticks in my craw every time because it's totally unacceptable. Leaving aside the school's legal obligations to children with disabilities (we'll get back to those in a moment), sending these children home with their parents when they have bad days forms a dangerous pattern. No matter where they fall on the autism spectrum, our kids are savvy enough to figure out pretty quickly that having a bad day (whatever that is) means they get to go home. Once they figure that out, what are the odds that the bad days will increase?

The main thing parents need to know is that if school administrators call you to pick your child up early, it counts as a suspension. And there are limits to the amount of time your school can suspend your child if the behavior is a manifestation of your child's disability. A student with a disability cannot be denied education services for more than 10 days in a school year, and repeated short-term suspensions can constitute a pattern of exclusion. The bottom line is, the school is not educating your child if they're calling you to come and pick him/her up.

What to do if you're on the receiving end of calls like this? If your child has a behavior intervention plan (BIP), find out if it's being followed. If there's no BIP in place, there should be. Call an IEP team meeting to discuss the situation. If the school can't handle your child without calling you for pickup, then it's time to call in the cavalry. School districts vary, of course, but they should have specialists who can come out and consult with your school team to help them manage your child's behavior. The school should be reaching out for help without parents having to make noise, but in my experience, the schools who are calling parents to pick up their kids aren't the ones that are on the ball.

Given that, it may be time to consider whether another placement is in the best interest of your child. Can the current school right the ship, or is your student more likely to be successful somewhere else? Sometimes the answer to that question isn't easy, but remember that the main goal is for the pickup requests to stop and for education to resume. You don't need the stress of fielding pickup requests, and your child does not need to continue a negative pattern that costs valuable instructional time.

A friend once put it best when she said, "I have a no-pickup rule. I tell my sons' schools not to call me unless there's blood, fever, vomit, or threat of serious bodily harm to self or others. Don't call me to come and get him because he's 'having a bad day.'" Amen.

I recently found a publication by the Maryland Disability Law Center that addresses these and other special education issues. You can download Special Education Rights: A Handbook for Maryland Families and Professionals in pdf format from their web site. The section on discipline and suspensions begins on page 33.

-- Alison Hamilton

Dynamic Development May Meeting

A huge thanks to Michelle and Lisa from Dynamic Development for a great lecture today. We learned about new techniques in occupational therapy, auditory assessments and intervention treatments, and played on the interactive metronome.

A few highlights from our meeting today:

Astronaut board - a therapy option that can help some kids with vestibular issues and sensory processing issues.

Interactive metronome - challenges the patient to synchronize a range of hand and foot exercises to a precise computer-generated reference tone heard through headphones. The patient attempts to match the rhythmic beat with repetitive motor actions. It can help with focus and attention and physical endurance and stamina.

Karoake - singing with your child and having them use a karoake machine helps to stimulate the listening and also singing stimulates the brain.

Auditory training programs - there are many different protocols that you can follow. The selection is specific to each child. You may do one at one point of helping your child and then move to another when you are seeking to improve different skills. Working closely with a licensed and trained therapist is critical.

What a great way to spend a Saturday learning and helping our kids.

Freebies

If you have an iPhone (and I believe I've mentioned my love affair with mine before), it might interest you to know that all ABA apps are free for the month of April in honor of autism awareness month. Tell your therapists, or check them out yourself. Since my daughter lives to steal my iPhone anyway, she might as well learn something once she gets it. :)

Overheard at DAN, part 2

From Andrew Levinson, MD, whose presentation concludes the conference
today. In reminding his audience to eat healthy, he reminds us, "You
are what you don't poop."

Sent from my iPhone

Overheard at the DAN conference

Sidney Baker, MD, on gut issues and the founding of DAN:

"We didn't know when we started this movement that it was going to
turn into a bowel movement."

Sent from my iPhone

Big thanks to the Robert Andrew Salon and Spa

TACA in the OC Register

Check out TACA's special insert in the Orange County Register. It appeared yesterday, 4/1, in honor of April, which TACA has dubbed Autism Action Month.

I think it's safe to assume we're all aware, as well as our friends, families, and neighbors. This month, TACA is working to translate awareness into action. Sharing this insert is a great way to highlight the actions parents can take to help their children progress.

April also kicks off TACA's three-month Family and Friends campaign. This is TACA's major annual fundraising effort. Lisa Ackerman and the rest of the executive staff at TACA feel strongly that the families TACA serves should spend their money on their children. That's why there's no membership fee to join TACA, and why 95% of TACA's programs are free to families. Once a year, TACA offers its members the opportunity to help TACA help more families through the online Family and Friends campaign. It's run through Firstgiving, which offers a secure place for visitors to your page to donate online. The pages can be personalized, which gives you the opportunity to tell your family's story.

Family and Friends has become my family's major annual fundraising effort. Quite simply, until there's a cure, we need TACA. My family's page took about 10 or 15 minutes to complete. If you'd like to see some examples, check out pages by:

• Alison Hamilton
• Alison Hoffman
• Katherine O'Brien
• Jill Zaukus
  

Our thanks to all who support TACA by coming to meetings, participating in our Yahoo discussion group, and generally spreading the word about what we offer. We look forward to continuing to grow our community in Maryland.

-- Alison Hamilton

Sunday's cookie recipe

Sunday's gfcf offerings included Skippy Truffles (so named because they originated from the Skippy web site), a very easy recipe that uses a short list of ingredients, all of which are available anywhere. No out-of-the way trips to specialty markets for flours, shortenings, etc.

Skippy Truffles
1c. peanut butter
1c. light brown sugar
1tsp baking soda
1 egg
1/2 cup chocolate chips (Ghirardelli's semi-sweet are our favorite)

Preheat oven to 350. Mix first four ingredients, then stir in chips. Bake for nine minutes; allow to set for at least 5 minutes before removing to wire rack. It's not a huge recipe -- if you're feeding a crowd, you'll want to double it.

A mother's perspective on autism

Check out this really poignant piece from Age of Autism about raising a child on the spectrum.

Food for thought

I routinely avoided calls from our insurance agent, until I needed something from her. When I couldn't find our current auto insurance card in the crumb-strewn abyss of my minivan, I had to call for a new copy. I was really hoping I could sneak in and out of her office without anyone realizing I've never scheduled an appointment to review our family's insurance status. I had been successfully avoiding those for years. I was pretty sure the conversation would be about the hundreds of thousands of dollars in life insurance that we still need, and the fact that any spare cash we might have had for premiums is already spoken for by OTs, speech pathologists, out-of-network doctors, and the like. (And let's face it, some of them are vying for the same money ...)

No luck. I was cornered by our agent herself. And was reluctantly impressed when she knew who I was and remembered last summer's Capital article about TACA. When she mentioned that the new Women's Chamber of Commerce in our town was looking for some charitable causes, she had me. I would go, review our insurance, and leave some TACA information behind. And then I could quit dodging State Farm calls for awhile.

"We are not buying any new insurance," I told my husband. He agreed to show up on his way home from work. By then I think we were both viewing this as a necessary evil. Kind of like dental cleanings. Endure it, and forget about it for awhile.

I was pleasantly surprised by our agent. She was not pushy. She was conversant in college football, important since Mike's Longhorns just played for the national title. She accepted our explanation about limited funds for more insurance. But she did talk about an umbrella policy. And after a couple of minutes, she had our attention.

The umbrella policy covers gaps left by policies like home and auto, she explained. If a tree from our yard falls onto a neighbor's car, or a repair person trips in our garage (if you've ever been in there, you know that's a possibility), the policy picks up where our home or auto coverage leaves off. In my experience, insurance usually leaves off a lot of the important stuff. The umbrella policy covers every member of our family.

Mike was a bit quicker on the draw than I was. He asked, "So, if Leah does something, we're covered?" The lightbulb went on for both of us.

I look back at that paragraph and wonder whether I just made my daughter sound like a monster. She's not. She's a kid with pragmatic language delays who still communicates quite a bit through behaviors. She's the girl with the curl. And when our insurance agent explained umbrella policies to us in January, it didn't take us long to consider that, like a lot of kids, Leah goes through good and bad cycles of behavior. Her most recent 'down cycle' (as I call them) happened in December. Bad behavior can include tipping chairs, throwing shoes, and if she still hasn't gotten her point across, the occasional whack in the direction of a classmate. When she lashes out, she's focused on communicating her rage to the adults in her way. A chair, a pair of shoes, or the arm of a classmate are means to an end, unfortunately.

In her special ed classroom, all the kids have behavior issues of some kind. Her neurotypical classmates have been very supportive of her up to this point. We're also helped by the fact that she isn't strong. But I couldn't help but think about what might happen if a tossed shoe connects with the wrong kid sometime. A child of parents who think a shoe print on a kid's forearm is grounds for a lawsuit.

Rates were about $30-40 a month for coverage that also supplements my professional liability insurance (I resumed my career as a social worker not long ago). ASD kids don't always interact easily with the rest of the world. The last thing I wanted was to add attorney's fees or someone else's medical expenses to a family budget already dominated by autism. So I went back on my word. At the risk of sounding like a shill for insurance agents, I think umbrella policies are worth a look, especially if you think your kid could harm other people or other things, however unintentionally. (Of course, that could describe just about any teenager with a learner's permit.)

We bought the insurance. It's one policy I will be very glad not to need. But we left the life insurance the way it was. I choose to see that as a victory.

-- Alison Hamilton

There's an app for that

Anyone who knows me well knows that a) I've never met a gadget I don't like, and b) as far as I'm concerned, God must have created the iPhone.

I've found a couple of great autism-related apps at the iTunes store, and was pleased to see that quite a few more are available. I've had some fun playing with Behavior Tracker Pro, which I got on sale for $10. It's also available for the BlackBerry and the Google Android. If you need to keep behavior data on your kid, this is a pretty cool way to do it. I can track frequency and duration of behaviors, or do a full ABC workup, with just a few taps. But again, I'm a gadget junkie.

I also bought Is That Gluten Free?, which is exactly what it appears to be -- a database of gluten-free foods that includes national brands and some grocery store brands. It's not a perfect fit for our community -- what many of us really need is 'Is That GFCF and Maybe SF?' -- but I've always found it most challenging to ferret out all the potential sources of gluten from an ingredient list. Casein is a bit more straightforward. Also, Leah has celiac disease, which means that cheating on special occasions and compensating with a good enzyme (which I know some people do from time to time) is not an option. Although we've been doing the celiac thing for awhile, I still have to make the occasional call to manufacturers. I'm hoping this app will save me some time.

I also saw a lot of ABA flash cards in the app store. I have no experience with them, but it was nice to see them there. The flip side to the flash cards is, if you use them, you have to let your kid know what the iPhone can do. Which is sort of like opening Pandora's box. I speak from experience. Leah is quite adept at stealing my iPhone when I'm not looking and using the You Tube app to find her favorite Guinness commercials and Phineas and Ferb bits.

In fact, I think I hear her coming. Time to secure the gadget.

--Alison Hamilton

A great meeting!

Final head counts aren't in yet (i.e., we haven't had time to go over the sign-in sheets), but early estimates are that we had between 30 and 40 people at our meeting yesterday. Our thanks to Dr. Richard Layton for a great talk and to Dr. Pamela Compart and the staff at HeartLight Healing Arts for donating their space.

Dr. Layton addressed a lot of things, but one point that resonated with me came toward the end, when he characterized his DAN practice as a combination of both the art and science of medicine. He acknowledged that his work evolves frequently, saying that he has discarded some of the approaches he was using a few years ago and may find new, better practices tomorrow. I've been on the biomedical path for -- gulp -- six years now, and in that time I have acquired a true appreciation of the flexibility and openness to new ideas required of a DAN practitioner. While many mainstream doctors can fall back on the same approaches to medicine year in and year out (whether or not they should is an argument for another day), a good DAN doctor cannot. They have to adapt to the issues our kids are presenting today.

I also appreciated his candor -- he was quite honest in saying that biomedical approaches lead to recovery for some, improvement for others, and few effects for some kids. He also said something I and many other parents have expressed before -- that in our shoes, he would use the DAN protocol on his own children, because he'd want to look back and know he'd tried every possibility. I'm the mother of a slow responder, and while I have faith in the biomedical approach, I often call it an emerging field. I'm thrilled at the number of kids who are already benefiting from biomedical treatments and remain hopeful that our slow responders will catch up in time. I appreciate that Dr. Layton and others like him are willing to practice the art of medicine, because it is that adaptability that will keep DAN moving forward.

As will I. Pretty sure it's time to go and administer some more probiotics.

-- Alison Hamilton

Welcome

Believe it or not, our first birthday is approaching. This time last year, we were preparing to launch the TACA Maryland/DC chapter. We were especially pleased with our decision to apply for a chapter when we realized participation in the annual TACA boot camp -- held in warm, sunny southern California in January -- was mandatory. Jokes aside, we were drawn to TACA's focus on families helping families and impressed that TACA offers 95% of its programs for free.

Like most startups, we've had leaps forward and more challenging steps as we've worked to establish TACA in our community. Our Yahoo group has grown to more than 100 members, and we're grateful for those members' willingness to contribute their ideas and knowledge. The need and desire for TACA is clearly out there. Our biggest challenge this year has been finding free space for our meetings, available at times our members can be there. Initially we thought the best way to reach as many people as possible was to alternate months between Montgomery and Anne Arundel Counties. Meeting space remained challenging, and attendance fluctuated. At the end of last year, thanks to Dr. Compart and HeartLight Healing Arts, we found a solution. They have generously offered to host us every month at their office in Columbia, beginning this Sunday, January 17. We're excited to christen our new meeting space with a talk on the allergy-autism connection by Dr. Layton, and we're looking forward to seeing many of you there. After a month off in December, we're itching to give away some Journey Guides too!

We also have a few New Year's resolutions to grow our chapter. Watch this space and the Yahoo group for details:

• Take advantage of the digital age. With this new blog, we're partway there already. We will be inviting some of our active members to contribute content. We're also working on ways to make more of our meeting content available online.
• Plan some family activities. We're hoping to start by planning something fun for autism awareness month in April. Dads' nights out will continue in Montgomery County.
• Keep getting the word out. We hope to have a TACA presence at the DAN conference in Baltimore this April, and possibly one of the Autism Speaks walks in the fall. Other chapters have done this; we're waiting for the budget gurus to approve our requests.
  
• Keep reaching out to new families. We're always on the lookout for new mentors and we're hoping to host a TACA Autism Journey Seminar later this year.

So, welcome 2010! We're looking forward to a great year.

-- Alison Hamilton