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How to Prepare for an Autism Emergency LIVE Q & A
Please join us for a live chat, on Nov 15th at 4-5 pm EST Dennis Debbaudt, of www.autismriskmanagement.com, will present “How to Prepare for an Autism Emergency.”
Dennis Debbaudt is the proud father of Brad, a young man who has autism. In the 1980′s,
Dennis wrote for the Detroit News and worked with network television current affairs
programs in the U.S., Canada and United Kingdom. A professional investigator and journalist
since 1977, Dennis turned his attention to autism spectrum conditions in 1987 after his son
was diagnosed with autism. His first report Avoiding Unfortunate Situations was published in
1994. He’s since authored over 30 articles, books and chapters including Autism, Advocates
and Law Enforcement Professionals: Recognizing and Reducing Risk Situations for People with
Autism Spectrum Disorders for Jessica Kingsley Publishers, London UK (2002), Contact with
Individuals with Autism: Effective Resolutions for the FBI Law Enforcement Bulletin
(Debbaudt & Rothman, 2001), Patients with Autism and Other High Risks for the Journal of
Healthcare Protection Management (2009) and Autism in the Criminal Justice System (Taylor,
Mesibov & Debbaudt, 2009).
No Ribbon for Alexa
By Paula Scheider
The Eagle Globe and Anchor, the familiar yellow ribbon…The autism awareness emblem: the iconic blue puzzle piece.
Take a look at my fridge, my wardrobe, our home and you will see these reminders everywhere. Perhaps it is a remnant of my Catholic upbringing but I tend to surround myself with symbols of what is dear to me. I need no reminder that my son Jay is a Marine or that my daughter Fiona has autism but I do need to be reminded at times that we are all part of a larger community who shares my experience. One thing I have learned in my extensive autism education this year is that I am classically NT (neuro-typical)- I need to belong to society.
My daughter Alexa understands this. No surprise, considering that Alexa at 11 years old is one of the most empathetic human beings God created. Empathetic, considerate, open-hearted, giving … and astute.
Witness her observation as she stood in front of the fridge and inventoried the various magnets:
There’s no ribbon for me.
This was said without a shred of self-pity or anger. No jealousy or assigning of guilt. It was as matter of fact as if she had just announced we were out of milk.
There’s no ribbon for me.
I immediately pointed out that the majority of the artwork was in fact, hers and she shrugged. “I know,” was all she said.
“And look how many pictures of you we have,” I stumbled on.
“Mom, I know,” Alexa smiled. “I know you love me and all that. I just noticed there’s no ribbon for kids like me, that’s all.” And the subject was dropped and she went on with her life.
It haunted me for days. Kids like me … are there ribbons for gifted kids? Children with special needs siblings? Middle siblings? Children who handle divorce and multiple households? Finally, I asked her.
“It’s no big deal, Mom” was her answer.
“Really?”
“Yes, really.” Alexa shrugged. “I only mentioned it because I noticed it. It’s not a big thing to me.”
And while I believed her, it was a big deal to me. Ever since Fiona’s diagnosis and Jay’s deployment, I had been conscious of Alexa’s feelings. Here she was, with a hero big brother and a baby sister with autism and I didn’t want her to get lost in the shuffle. Add to that her family dynamic at her father’s home, where she is the big sister to two darling – and new – little brothers. Her bonus mother and I had discussed it and together we worked to make sure that Alexa felt loved and important and unique. Both her father and Eric make special time for her and treat her like a princess. At school, her only transgression seems to be talking too much and trying to take care of everyone. In my heart, I know Alexa is secure and I am grateful.
But this ribbon thing nagged at me. It wasn’t that Alexa felt neglected or unimportant – it was that there was no symbol of her. No symbol of the selflessness she displays. No symbol of the joy she inspires in all of us, no symbol of her frustrations and fears and anger. At a glance, our family appears to have two heroic children when in fact, there are three. And that made me think – there must be so many “kids like me” out there, kids who live with and love a child with special needs, kids who have to worry about a faraway war, kids who feel confused and left out at times and guilty for being normal. Kids who need to love others almost as much as they need to be loved. Kids who love and resent having siblings who are different. Kids like my Alexa.
Alexa’s ribbon would have to be pink, for her boundless love. Pink like the flowers, like the lip gloss she can’t live without, pink like her cheeks after a giggling fit. Pink because while she is one tough cookie, Alexa is all girl.
And it would be purple, because purple is fun and festive and alive. Purple is for royalty and Alexa is our princess. Purple stands out in a crowd. It would be tie-dyed with all different shades of purple and pink because Alexa is funky and stylish and never takes herself too seriously.
And most of all, there would be glitter, because even in a dark night, Alexa sparkles.
Click here to download the Sibling Support Tool Kit. This tool kit is for children who have a brother or sister diagnosed with autism. Though the guide has been designed for children ages 6-12, the information can be adapted as needed to other age and education levels. The guide is written in an interactive format so parents and siblings can set aside some quiet time to read the guide together. The intention is to create an opportunity for siblings to focus on their feelings, reactions to their sibling’s diagnosis and get information about autism.
Family Services Office Hours – 11.10.11
Office Hours easily connects families to a wide variety of autism-related resources, including Family Services Tool Kits, and the Autism Speaks Resource Guide, an online national database of autism providers and resources searchable by state and zip code.
Family Services Office Hours is designed to quickly provide access to resources that are available and free to the entire autism community.
The Office Hours sessions are staffed by ART coordinators who are specially trained to connect families affected by autism to resources.
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Voices of Autism: A brother’s perspective
This blog post is by Andy Shumaker. His brother Matthew has autism. Andy is a graduate of Yale University.
My brother doesn’t like me very much, and I don’t blame him.
It’s not that I’m a bad person, or that I don’t treat him nicely. It’s not that he’s unfriendly. I think it’s just hard to like someone who’s a lot luckier than you are.
Matthew was born a couple of years before I was, but somewhere along the way I became the older brother. I think I started speaking more than he did early on, not that we cared at the time. But as we grew older, the milestones started to matter.
The driver’s license was a big one. In east bay suburbia, it’s a given that on your 16th birthday you go to the DMV and take the test. It’s all you talk about when you’re a sophomore in high school, and when Matthew was that age, he probably heard about it every day when he walked alone through the halls.
He would talk to my mom about how excited he was to get his license; she would try to disabuse him of this illusory desire as gently as possible. But he was adamant. He wrote his name in Sharpie on my mom’s license plate. One time he got in her car and, instead of backing out of the garage, put it in drive and drove through the wall.
I, the neurotypical one, got my driver’s license on my 16th birthday, when Matthew was 18. According to Matthew, though, I wasn’t allowed to drive. I was younger than he was, so it made no sense for me to have rights that he didn’t.
When I needed to drive somewhere and Matthew was at home, my parents would have to drop me off at the end of our street before walking back home.
Matthew knew what was up, and he would give me a stern warning about the dangers of driving the next day. Whenever he caught me trying to sneak out of the garage, he would run out and scream at me.
Things have changed since then. After he got over the screaming thing, he displaced the driving ban onto Michael, our next-door neighbor who is Matthew’s age. This went on for a few years– when he saw me driving, I would have to roll down the window, and he would tell me that Michael wasn’t allowed to drive, to which I would always agree before going on my way. Today, after seven years, I’m allowed to drive, but not if he’s in the car.
Matthew can drive, if he feels like it. My dad drives him to the parking lot of the church near our house. Then they switch seats, Matthew drives in circles, and my dad’s hand rests on the emergency brake.
But it’s not just about the car. Matthew and I don’t really get along when we’re around the house, and I think it all has to do with jealousy.
I am very lucky.<Matthew knows that I have no trouble making friends, and he knows that I have a girlfriend. He knows that I’m more independent than he is, and that I go to college.
Sometimes I accidentally beat him when we play video games together.
If I enter the room when he’s not in the mood to see me, he comically turns and shields me from his presence, essentially giving me the most literal version of the “cold shoulder” I have ever seen. I’m not allowed to pat him on the back without permission. When he apologizes to me or says something nice to me, it’s usually because my parents have made him do it.
The good news is that things are getting better all the time. The breakthroughs are gratifying.
Our most recent visit to my grandfather’s house in Carmel was a big one.
I got back from the beach a half hour before we were supposed to drive home. Matthew was sulking on Grandpa’s bed, and I asked him what was up.
“I really want to go to the candy shop all by myself but my mother won’t let me,” he said. There is a little shop on Ocean Avenue where Matthew likes to buy jelly beans.
“Well, why don’t we go together?” I ventured.
“I don’t know,” he said hesitantly.
“Come on, let’s go.” I said it forcefully. Matthew sighed.
“OK.”
He must have really wanted those jelly beans.
So we set off down the street toward Ocean Avenue. He even tried out some conversation starters that I hadn’t heard before.
“So, how’s it goin’?” he asked in a rather nuanced, jocular tone.
I told him it was goin’ great. Told him I went swimming in the ocean.
“It must have been cold!” he said.
After our first few exchanges, the trip to the candy shop was pretty quiet. Matthew likes to think when he walks. I like to think that he was thinking, among other things, about jelly beans, and about how his younger brother isn’t so bad after all.
The trip to the candy shop was a good breakthrough, and when you have a less-than-satisfactory relationship with your autistic older brother, you take what you can get. I think it will keep getting better as we grow older, and I hope his jealousy will fade in some ways.Like I said, I don’t blame him if he doesn’t like me. It’s hard to like someone who’s a lot luckier than you are.
I just hope that some day, he realizes that one of the luckiest things that happened to me was him.
Click here to download the Sibling Support Tool Kit. This tool kit is for children who have a brother or sister diagnosed with autism. Though the guide has been designed for children ages 6-12, the information can be adapted as needed to other age and education levels. The guide is written in an interactive format so parents and siblings can set aside some quiet time to read the guide together. The intention is to create an opportunity for siblings to focus on their feelings, reactions to their sibling’s diagnosis and get information about autism.
What About the Siblings? – 6 Tips from Siblings of People with Autism
This is a blog post by Eric Peacock of MyAutismTeam.
This past Sunday morning I was in Seattle at the US Autism & Asperger Association Conferenceand fortunate enough to catch a panel on “Siblings of People with Autism.” The Panel had five young, neuro-typical men and women ranging in age from 14 to 27, each of whom have siblings on the autism spectrum. I was impressed by the poise, sense of humor, courage and wisdom of this panel and just wanted to pass on a few pointers for parent that I took away from the panel.Open up a channel of communication with your neuro-typical child – All 5 panelists understand that their parents need to spend more time with their sibling on the spectrum, and don’t really seem to resent that fact. They just want to occasionally be asked how they feel about all of it. And it’s not really a time for you to talk. “Don’t feel you have to lecture or provider more answers…just listen.” Just asking about it let’s the child know it’s ok for them to talk and even voice complaints about their situation or feelings.
- Talk about bullying – It’s a typical sibling instinct (for both girls and boys) to jump into the thick of things to defend their sibling on the spectrum from bullying. So they’ll do it, but often it’s a scary or uncomfortable feeling. Sometimes just a word from you like, “If you see your brother being bullied at school, find a teacher and tell them about it” – will remind them they don’t have to take on all that responsibility by themselves. At a minimum, they may pause to notify someone to get help before they step in. For other tips on how to proactively prevent bullying please check out “IEPs, IPads and Bullies – 10 Tips from a Dad Who Has Been There”
- Start planning early- for when your child on the spectrum becomes an adult, AND for when you are no longer able to watch over him. There were several talks on this topic over the weekend at the conference. In a country where most Americans haven’t properly prepared for their own retirements, let alone that of a special-needs child, this is a daunting topic . As your neuro-typical kids become young adults they’ll start to think and worry about this, and be prepared to talk about it. One woman on the panel already knows that she would be her brother’s legal guardian should anything happened to her parents. Others weren’t sure what kind of plan was in place. The comment that took the cake (and brought tears to my eyes) was when the 14-year old girl on the panel said, “Well, I’m still a little young to be thinking about what will happen when my parents die, but I’ll take care of my brother.”
- Preparing their friends – As kids, and young adults, most panelists became accustomed to giving an “Autism 101” talk to their friends before they first meet a sibling on the spectrum – just to let them know what to expect. One woman told a hysterical story about her little brother Mikey who went through a phase when he was younger. I paraphrase, “Mikey was really into rain boots…… Just rain boots. One time I had my first boyfriend over the house and Mikey walked in wearing nothing but his rain boots.” – On a more serious and actionable note, many parents are now going into their kid’s first-grade classrooms to explain autism, so that kids (and their teachers) get a better understanding of this early on in life.
- The “R” word – Related to the above, one word that really can be upsetting to people is any derogatory / casual use of the word “retarded”. They often have to explain to their friends why that is upsetting.
- “Pockets of normalcy” – At some point your kids may seek “pockets of normalcy” – times when they can experience life as though they didn’t have a sibling on the spectrum. This may lead them – when they are old enough – to spend more time at their friend’s house than at yours. “Our house was always a mess and crazy. I spent most of high school at friend’s houses.”
Family Services Office Hours – 11.03.11
Office Hours easily connects families to a wide variety of autism-related resources, including Family Services Tool Kits, and the Autism Speaks Resource Guide, an online national database of autism providers and resources searchable by state and zip code.
Family Services Office Hours is designed to quickly provide access to resources that are available and free to the entire autism community.
The Office Hours sessions are staffed by ART coordinators who are specially trained to connect families affected by autism to resources.
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Family Services Office Hours – 10.26.11
Office Hours easily connects families to a wide variety of autism-related resources, including Family Services Tool Kits, and the Autism Speaks Resource Guide, an online national database of autism providers and resources searchable by state and zip code.
Family Services Office Hours is designed to quickly provide access to resources that are available and free to the entire autism community.
The Office Hours sessions are staffed by ART coordinators who are specially trained to connect families affected by autism to resources.
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England’s National Autistic Society and Goldman Sachs Win Award for Employment Program
England’s The National Autistic Society (NAS) and Goldman Sachs were awarded the Corporate Social Responsibility Project of the Year at the annual Charity Times awards 2011. The NAS and Goldman Sachs took home the award for their partnership, Prospects, which helps young adults with autism find paid employment.
Prospects, which offers one-to-one sessions and group workshops covering communication skills for the workplace, job-searching, interview skills, choosing an occupation and creating an effective CV, first began placing candidates with Goldman Sachs in 2003. Learn more about the award from the National Autistic Society site and on hereisthecity.com.
10 Providers for Teens with Asperger’s – Recommendations from Parents Who Have Been There
Over 700 parents of teenagers with Asperger’s Disorder have registered on MyAutismTeam.com – a site where parents of children on the autism spectrum connect, share recommendations of local providers, and share tips with each other. That’s about 20% of all parents on the site. These parents have spent years building up their “autism teams” – all of the providers needed to help their children develop and thrive. They have endured a lot of “trial and error” to find what therapies (and which providers) work best for their teens. We looked at all the parents of children with Asperger’s Disorder on MyAutismTeam, narrowed it down to those with teens on the spectrum, and read through their stories and teams. Summarized below are five of the more common, and five more unique, types of providers on these parents’ teams.
5 Common Team Members for Teens with Asperger’s
5. Pediatrician – Every child needs one, but finding one with some understanding of autism and sensitivity to the needs of a child on the spectrum is important. Autism was not nearly as recognized 10 years ago (when many of these parents were first seeking answers) as it is now, so some parents have had to “break in” their pediatricians over the years – sticking to their guns and insisting on a referral for a diagnosis when the pediatrician has told them something like, “Speech delays are normal for a boy of his age”. You may not find a pediatrician with formal training in autism, but it’s helpful to find those that regularly see kids on the spectrum. If you need help, there are over 670 pediatricians marked “Autism-Yes” on MyAutismTeam (meaning another parent or our partner, Autism Speaks, has indicated that the pediatrician is experienced working with children on the spectrum.) If you can recommend a fabulous pediatrician, please find them on MyAutismTeam and add them to your team. A word from you can save another parent months of “trial and error.”
4. Psychiatrist / Psychologist – For initial and ongoing evaluations that not only help guide the types of therapies you pursue for your child, but also help in securing necessary services from schools and insurance companies. A psychiatrist has a medical degree and can prescribe medications. A psychologist has a doctoral-level degree in psychology. (Note: Many parents report seeing a Neurologist as well.)
3. Dentists – It’s hard enough to bring a neurotypical child to the dentist every six months, but to a child with Asperger’s and sensory sensitivity, a trip to the dentist can be daunting (even for a teen). That’s probably why so many parents list a dentist as part of their Autism Teams. Finding a dentist that is sensitive to those needs and skilled at working around them is a big deal. Some parents seek out dentists that put their patients under anesthesia to make the process go more smoothly. Check out Autism Speak’s Dental Tool Kit for more tips on making visits to the dentist office less stressful and more productive.
2. Early Intervention Therapists – When asked “What therapies worked best for your child” more parents respond that ABA, occupational, social integration and speech therapy were the most effective in helping their children make progress. They seek these therapies out through their IEPs at school, privately if they can afford them, and through other local resources where they exist. One of the most common challenges parents discuss on the site is helping their teens build social skills and relationships with other kids their age. BethComptonMathie ofMorristown,Tennessee explains, “My son used to have friends but the older he gets, the harder it gets. [He] is focused on video games.” She has tried social classes over the summer and her son now works with a psychologist who visits the school each week from the same summer program. Other parents have reported that occupational therapists have vastly improved their child’s handwriting.
1. Respite Care - Every parent needs a break of some sort. A time to run an errand , do something for themselves, or just recuperate. Many parents list the local chapters of Easter Seals as an invaluable resource for finding respite care and preserving their personal sanity. As one veteran mom responded on lessons she’s learned, “I wish I knew how important it was that I make myself a priority. It’s the little things that I carve out in MY life to self-nurture that give me the strength to live, laugh and love more deeply today and be the best parent I can be.”
5 More Unique Providers You May Not Have Considered
5. Martial Arts Instructors – Martial arts from an understanding instructor can promote focus, discipline, self-confidence, and physical stamina. Numerous parents on MyAutismTeam start their child in martial arts classes at age 5 or 6. In some instances it’s an activity that dads do with their children.
4. Horseback Riding Therapy – Occupational therapy through horseback riding can be a wonderful experience for kids with special needs. CaddysLady of Vancouver Washington lists two such providers on her autism team.
3. Attorneys – Sometimes attorneys specializing in special education law have been helpful for parents struggling to get the appropriate services from their school district or in securing coverage of key therapies from insurance companies. One New Jersey mother of a 20 year old with Asperger’s has an attorney to help secure the things the services that come after the teenage years. “After 2 years of fighting for Transitional Education, and winning in Court, my son has almost completed his first 30 days in a specialized school.”
2. Piano Lessons – Quite a few parents have piano teachers on their autism teams. I think a mother of 5 year-old (not a teenager) with Asperger’s, Sharon Esch ofAlbuquerque,New Mexico, sums it up perfectly. “Music seems to be a great therapy for [my son], giving him an opportunity to work on fine motor skills in a way that doesn’t seem like work. Also, I think he enjoys the immediate response of hearing music when he plays, something he controls himself.”
1. Barbers – Like the dentists, every child needs a barber, and every child on the spectrum needs a barber who “gets it.” For a particularly inspired and touching account of the bond between one teen turned adult on the spectrum and his barber read Laura Shumaker’s brilliant piece, “Mentor, Helper Friend.”
Who’s On Your Team?
You can see all of the parents of children with Asperger’s Disorder on MyAutismTeam and read through their stories and see their teams. You can also post on their walls and ask them questions. If you have fabulous local providers you can recommend to other parents just starting out on this journey, we hope you’ll join MyAutismTeam and share your wisdom!
Posted byEric Peacock, GM of MyAutismTeam
@ejpeacock
Rachel Pollack LIVE Chat Transcript
Rachel Pollack, Chief Operating Officer and General Counsel of Job Path, answered questions about employment, in recognition of October as U.S. Department of Labor’s National Disability Employment Awareness month.
Since 1978, Job Path has helped people with developmental disabilities find and excel in mainstream jobs where they work alongside non-disabled colleagues. Job Path graduates work in banks, retail establishments, restaurants and other organizations.
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