TACA 2010 Achievements and New Year's Resolutions for 2011

The TACA Maryland/DC leadership team is back from our annual conference. We learned a lot while connecting with TACA chapter coordinators from around the country and came home ready for an exciting 2011. TACA's accomplishments for 2010, shared with all of us at the conference, are truly inspiring. 2010 included both challenges and accomplishments for our chapter; based on those, here are our resolutions for 2011:

• Continue to listen to and support our members. Our Yahoo group has grown to 180 members. We thank all of our regular contributors to the discussions there and encourage everyone to keep posting their questions. We want to keep hearing from you, both via the Yahoo group and via e-mail if needed.
• Maintain a presence at community events. Our chapter coordinators served as mentors at the ARI/DAN conference in April 2010. We also sponsored a leg of Dr. Bob Sears' book tour for The Autism Book and met with Baltimore-area broadcasters to educate them about concerns of families affected by autism and to inform them of chapter events.
• Meet regularly in the same place. In early 2010, we continued to struggle with locations and times for meetings. Free space in this area was hard to come by, but consistent meeting locations and times are now well established. We will have at least 10 meetings in Bethesda, MD, and at least 10 meetings in Severna Park, MD, this year. We will continue to host coffee talks to augment the support and education offered at the meetings. We appreciate everyone's patience and support while we were alternating between counties and locations. We cover a large geographic area that includes two states, the District, and many school systems. We would love to be in everyone's favorite location every month, but we're not superhuman. If a group of people from a particular area would like to schedule a coffee talk with one or more of the coordinators, please contact us, and we will do our best to arrange one.
• Recruit more parent mentors. TACA's parent mentoring program is another excellent (and free) source of support for families. If you have been on the autism journey for two years or longer, please consider sharing your expertise with others. There is payoff for mentors also -- Holly Bortfeld, the parent support coordinator, arranges excellent conference calls for mentors. Presenters have included Dr. Anju Usman and Dr. Dan Rossignol. There has been some discussion on the chapter Yahoo group about whether more monthly TACA meetings can be added. There are multiple factors that contribute to the foundation's decisions about adding new chapters (fundraising is a big one). It is worth noting that the first step toward becoming a TACA coordinator is becoming a mentor. More information and the mentor application are available at the TACA web site.
• Encourage our new members to apply for mentors. The one-on-one support and information can be invaluable. Information for mentees can also be found at the TACA web site.
• Keep the blog alive. We are hoping to revitalize the blog and expand it to include posts from our members. We will tap some of you to share your experiences with particular issues. If you have an idea for a blog entry, please share it! All contributions are submitted to Alison Hamilton for proofreading prior to posting. Please e-mail her with ideas for posts.

We are happy to offer support by e-mail. You can address questions or concerns directly to the four chapter coordinators. For Montgomery County/DC, contact Ali Hoffman (alison.hoffman@tacanow.org) or Katherine O'Brien (katherine.obrien@tacanow.org); for Baltimore/Annapolis, contact Alison Hamilton (alison.hamilton@tacanow.org) or Jill Zaukus (jill.zaukus@tacanow.org).

We are grateful for each of you and hope that 2011 will be a great year!

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