The social network for parents of kids with autism

MyAutismTeam Reaches 40,000 Parents

Free Social Network for Parents of Children with Autism Provides Much Needed Support and Information Sharing

SAN FRANCISCO – April 2, 2013 – MyHealthTeams today announced that more than 40,000 parents have registered for MyAutismTeam, the social network for parents of children with autism.  The free social network, which launched with just 30 parents in June 2011, has experienced rapid word-of-mouth growth as parents of children with autism look to connect with other parents for ideas, tips and support.

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Recent research from the Centers for Disease Control revealed that Autism now impacts as many as 1 in 50 children in the United States. Where do parents turn for support and answers to the many questions they have ranging from insurance issues and bullying to therapies and how to handle behavioral challenges?

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“If your child is diagnosed with autism, it should be easy to find the best people around to help you,” explains Eric Peacock, co-founder of MyAutismTeam. “Parents on MyAutismTeam connect with other parents who have been in their shoes, learn from them and get support, so that they don’t have to reinvent the wheel.  It’s an amazingly caring and constructive community.”

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Often, parents of children with autism find themselves feeling alone, confused and overwhelmed. MyAutismTeam offers several key features to address this:

  • Find People: Parents can search for other parents by city, age and gender of child, and sub-diagnosis on the autism spectrum to help deepen connections with those who have shared experiences
  • Activity Page: The core of the site where parents share updates, photos, ideas and  daily ups and downs with each other – support is provided for the tough moments and successes are cheered
  • Provider Directory: This searchable database provides parents with a database of more than 35,000 Autism-friendly resources; submitted by parents
  • The Team:  Parents share the team of providers who help them ranging from doctors and specialists to everyday services like a hairdresser/barber, babysitter, friendly restaurants, music teachers, etc. Parents also add other MyAutismTeam parents who they find supportive to their team.
  • Q&A:  With a 97% response rate, this database of more than 2,000 questions grows daily, parents can search or ask a new question on any topic for which they are seeking guidance.

“You have no idea how alone I felt before MyAutismTeam,” Christine Pasour, a parent in Dallas, NC. “I wish I had it years ago. Just knowing there is someone else out there going through the same experiences is huge.”

To start your team today, visit: MyAutismTeam.com

 

About MyAutismTeam

MyAutismTeam is a social network for parents in North America who have a child or on the Autism spectrum.   MyAutismTeam, makes it easy for parents of children of autism to find and connect with each other, share tips and support, ask and answer questions, and even find first-hand referrals of great providers and specialists.  MyAutismTeam, the official social network and family resources guide for Autism Speaks, was founded in June 2011 as the first health social network created by MyHealthTeams.

About MyHealthTeams

MyHealthTeams believes that if you are diagnosed with a chronic health condition, it should be easy to find the best people around to help you. It builds deeply engaging social networks for people facing chronic health conditions in the US. In addition to MyHealthTeams’ flagship site, MyAutismTeam, the company launched MyBCTeam in September 2012 to support women diagnosed with breast cancer. It is currently introducing MyMSTeam, a social network for individuals diagnosed with multiple sclerosis. To learn more visit them online at MyHealthTeams.com.

Media contact:

Rachel Alltmont
Alltmont Strategies
(703) 863-3296
Rachel.alltmont@gmail.com

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Having a child with autism can be tough on a marriage. Besides the emotional and financial strains that come from providing for a child with autism, there’s a huge time commitment involved with therapies and medical appointments. All that responsibility and pressure can make it difficult to have time or energy left for romance. So what are moms and dads to do? We asked parents on MyAutismTeam how they “keep the romance alive” in their marriages. These are their tips, most of which apply to any busy parent!

1. Plan date nights.

Take the time to line up a sitter or respite care at the beginning of each month to make sure you get out. No planning ahead usually means no date! As one mother on MyAutsimTeam shared, “My husband makes it a point for us to have date night at least two times per month. Sometimes we only go out for pie and coffee.  It’s not much, but it makes me feel like a million bucks.”

If you’re having trouble lining up a sitter, several parents on MyAutismTeam have had success using sites like SitterCity.com to find sitters who are familiar with autism.  With 1 in 54 boys being diagnosed with autism in the U.S., it’s no surprise that there are a lot of sitters experienced in caring for people with the condition.

2. Try the weekday lunch date.

If getting a sitter is difficult or too expensive, try meeting up for lunch while your child is at school—or have a late breakfast date before heading into work. As New Mexico mom Sharon Esch explains, “My husband and I have a weekly lunch date while my son is at school.  It’s great because we don’t need to get a sitter, we have time to talk to each other about adult things, and we are not falling asleep!”

3. Set a dedicated bedtime for your child.

This is the secret weapon that far too little parents use: Create a fixed bedtime for your child that leaves an hour or two in the evening for you to spend with your spouse.  “Our son has a designated bedtime at which he goes to sleep every single night. Non-negotiable,” says Debbie Caruso of Massachusetts. “We have a night-time routine that starts around 7:30 with bath, books, a favorite calming video and sleep time. ” Word to at-home moms: rest up! Says Caruso, “I nap while my son naps, so I can still have energy left when my hubby comes home.

4. Flirt! (Remember that?) 

Re-introduce flirting with your spouse, recommends Terri Eagen-Torkko from Michigan.  ”Write love letters while you’re in the waiting room during therapies.  Send flirty text messages.  Every day, tell [your spouse] that you love them and why.”  To take advantage of those times for intimacy, she continues, “teach the kids that a closed door means knocking AND hearing an answer before entering!”

5. Have moratoriums on autism talk.

Parenting a child with autism can be all-consuming; it can easily take up every minute of daily conversation with your spouse if you let it. Kansas father Martin Cunningham says it’s critical to occasionally set autism aside so you can have time to “remember the reason you married your spouse in the first place.” He recommends that couples take a few hours every week for “conversations with each other, and with friends, that have nothing to do with autism.” Adds Chris Tryon, a father of two in New York, “Keep up with your friends! You need to keep sight of who you are apart from your child.“

6. Create structure for your child on weekends.

Shifting from the structured school day and therapy schedule to an unstructured weekend can result in exhausting parenting work that leads to no relaxing time with your spouse. Many parents schedule activities such as taekwondo, gymnastics, or swim lessons to start the weekend off with structure–and hopefully gives them some time for each other later in the day.  In her blog post How this autism mom stays married, noted autism writer and MyAutismTeam mom Laura Shumaker shares that her husband got up every Saturday morning, made pancakes with her boys, and then watched Disney movies with them.  He did it to let her to catch up on sleep, but regular weekly traditions like that can create its own predictable structure for a child on the spectrum.

7. Give your spouse time to him or herself.

Sometimes the best thing you can do for your romance is to ensure each spouse gets time to him or herself.  A 2009 study showed that Autism Moms have the same levels of chronic stress as combat soldiers. Whoever the primary caregiver is in the household, make sure that person gets some time to recharge! Laura Shumaker shares that she and her husband cover for each other on parenting duties each week.  “My husband has played tennis every weekend [possible] for the past 28 years, and I get out to exercise, shop, see friends, or have one on one time with my other boys.”

8. Remember, you’re in this together.

“One sure way to destroy romance in a marriage is to extend the fighting we must constantly do (on behalf of our children) to the spouse”, says Martin Cunningham, a father and husband in Kansas. “It’s too easy to view our spouse’s perspective as adversarial when it does not match our own.  It takes a special intent and energy to remember that they want to help and, more often than not, a tremendous effort to maintain open communication about those differences.”

Laura Shumaker suggests couples taking extra pains to keep things civil.   “When I’m stuck at home all day and am STIR CRAZY, I resist the urge to say “Your turn!’ and race out the door the second my husband gets home.”  She explains that they hug and kiss, and have a moment to acknowledge each other before she says, “I’m going nuts.  I think I’ll go to the bookstore for a little bit. Is that OK?”

To connect directly with the parents mentioned in this article (and thousands more) and share your own romance tips, visit MyAutismTeam.

 This post originally appeared on Parents.com.

 “Music is the shorthand of emotion” – Leo Tolstoy

After her friend suggested that she join MyAutismTeam, Amy Pentz, of Riverview, Florida, used her phone to check it out. On the homepage of the social network for parents of kids with autism, she played the MyAutismTeam video tour, while her almost-3-year old son watched a movie. When the theme music for the video tour began, her son’s ears perked up, he turned around, began dancing, moving his arms and feet, smiling, making eye contact, and for a moment, “Autism didn’t exist. The music was so cheery, it made him happy listening to it,” says Amy, the self-described stay at home mom.

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Amy joined MyAutismTeam to get “a little help, support and camaraderie” from other parents who’ve been in her shoes. She wanted to be connected to those who understood the daily ups and downs of raising a child with autism. Little did she realize she would end up connecting even more with her son, Dayne, with the music from the site.

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“He’s never responded to any other music. Classical, country, rock… I’ve tried everything. But nothing has ever got him up and moving like the song that played on the MyAutismTeam video.”

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Here is a video of Dayne feeling the music.

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Amy explains, “I suspected that he was “quirky” when he was around 18-months-old, and lost all of his verbal language. My concerns were ignored by his pediatrician, so I found a new one who listened to me. Over the next year, there were numerous speech/language, occupational & behavioral evaluations. November 7, 2012, my suspicions were confirmed by an ADOS test.”

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Dayne, who will be three this month, gets a lot of therapy through a team of providers (Occupational Therapist, Speech Therapist, Behavioral Therapist and soon an ABA Therapist) at Total Therapy. One member of Amy and Dayne’s team is Nicole Shea, an occupational therapist who also specializes in Therapeutic Listening, and who first introduced Amy to music therapy, combined with the other OT and ABA therapy Dayne was benefiting from.

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The American Music Therapy Association says that music therapists, like Nicole Shea,

…use music therapy to enable those without verbal language to communicate, participate and express themselves non-verbally. Very often music therapy also assists in the development of verbal communication, speech, and language skills.

The interpersonal timing and reciprocity in shared play, turn-taking, listening and responding to another person are augmented in music therapy with children and adults with autism to accommodate and address their styles of communication.

The rhythmic component of music is very organizing for the sensory systems of

individuals diagnosed with autism. As a result, auditory processing and other sensory-motor, perceptual/motor, gross and fine motor skills can be enhanced through music therapy.

Musical elements and structures provide a sense of security and familiarity in the music therapy setting, encouraging individuals with ASD to attempt new tasks in a predictable but malleable framework.

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treble-clefZingDog, the musician and composer who wrote Happy Campers, the song that Amy’s son, Dayne connected with, had no idea how much the cheery music moved Dayne. “I was very pleased to hear the effect my music had on Dayne. It is both humbling and very satisfying to know that my music has made a connection with people. It makes me smile,” says the musician.

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“I wrote Happy Campers over the course of a few hours, so it happened about as quickly as all of my music does. I picked that title because to me it conjures up images of happy kids without a care in the world. I try to envision how each piece of music could be used and what visual images would work well with what I’m composing.”

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When asked about other music recommendations similar to Happy Campers, ZingDog agrees that musicians like Feist, Jack Johnson and Ingrid Michaelson also offer a collection of up-beat music.

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A Look Back To 2012

At MyAutismTeam, we looked back on some of our favorite stories of kids with autism ‘feeling the music’ in 2012. Besides Dayne, here are two more kids on the spectrum who connect with music in their own ways.

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Jacob, a blind child with autism literally feeling the music with this street:

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Ethan, the 6-year-old playing Billy Joel’s Piano Man accompanied by his music therapist on guitar:

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Do you have a story to share about your child with autism? Share it with us on MyAutismTeam.com, the social network just for parents like you. Are you a parent looking for music therapy for your child? Browse the music therapists listed in the MyAutismTeam Provider Directory (Keyword: “Music Therapy” Location: U.S.).

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With each new year, this is a time to take stock of your accomplishments, or ponder those projects that will make it to the “to-do” list in 2013.

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And no New Year is complete without resolutions. Resolutions can take many forms; from the above mentioned project list to personal improvements in ourselves. At MyAutismTeam, we wanted to hear from the parents about their own resolutions. We surveyed over 35,000 parents on MyAutismTeam about their resolutions and what they are envisioning for 2013.

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One of the resounding resolutions for parents this year will be to take a moment for themselves. From making an effort for laughter to making time for spouses and exercise, parents recognize that they give their best to their children when they are at their best. While simple in theory, such small acts go a long way, as a study from the Journal of Autism and Developmental Disorders has shown that parents (mothers in particular) are prone to feeling a sense of chronic stress that is similar to that of soldiers in combat.* This stress can often translate into health issues leading to additional stress, etc.

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However, parents are taking note. In an effort to avoid and reduce stress, parents are choosing to focus on the positive. Concentrating on their children’s strengths and new therapies, parents are choosing to make 2013 a time to learn. In a year when autism was front and center, parents are also taking action and vowing to be stronger advocates for their children and more engaged in their progress. The top ten resolutions from the survey are listed below.

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Top 10 Resolutions for 2013 by Parents with Children on the Autism Spectrum

  1. I will develop my child’s areas of strength.
  2. I will take things one day at a time.
  3. I will be a stronger advocate for my child at his/her school or with healthcare providers.
  4. I will explore new therapies for my child.
  5. I will be part of a strong social network for emotional, social, and informational support.
  6. I will make more time for my spouse and myself.
  7. I will exercise more.
  8. I will start looking at things from my child’s perspective.
  9. I will manage my own anxieties about social situations with my child.
  10. I will be vigilant in monitoring and managing my child’s progress.

In the busy days ahead, don’t forget your resolutions to help you get through to the next. Did your resolutions make the list? If not, share them with MyAutismTeam at http://www.myautismteam.com today.

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Autism Holidays

While the holiday season can be exciting because it lets us break routine, thousands of parents on MyAutismTeam.com have told us that it’s the breaking of routine that can create unexpected behavior in their kids with autism. Here are 5 tips from thousands of parents on MyAutismTeam.com to navigate the holidays:

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1) Practice – do a practice run of holidays events like gift exchanges with others, or meeting Santa at the mall, or even eating at the special occasion dining table. By getting their children familiar with typical holiday festivities, parents on myautismteam.com told us, the anxiety in their kids goes down.

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2) Keep it small – If you can, avoid large or loud groups. Some kids with autism get easily overwhelmed in large groups and loud noises, even if only music. Parents say it’s a good idea, to permit your child some downtime away from the hustle and bustle, so they can feel a moment of calm.

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3) Comfortable surroundings – gradually decorate your home and have them help. Some children with autism experience sensory overload from decorations, like flashy lights and music. Homes with non-flashy decor can feel more comfortable.

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4) Keep it simple – avoid over-scheduling. Parents suggest time-boxing certain events, and managing your child’s expectations of how long it may be that we’re visiting Aunt Katy’s or Granny’s.

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5) Finally, create a food plan – if visiting others for dinner pack snacks and meals that are familiar to your child, and communicate with your hosts that’ll you be doing that so that everyone is on the same page.

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These are just a few tips. Kids with autism are so different, and have different needs. Parents interested in learning more should ask other parents in their shoes on MyAutismTeam.com.

At MyAutismTeam, we are very saddened by the tragedy at Sandy Hook Elementary school last week. Our hearts and prayers go out to the victims and families impacted by this catastrophic event.

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In light of the varying news stemming from this horrible event, autism experts are rushing to silence the notion that there is a link between autism spectrum disorders and this kind of violence. Knowing that there are hundreds of conversations swirling on MyAutismTeam about fears of how children on the spectrum may be unfairly targeted (even more so) we asked our community at MyAutismTeam for help in responding to our survey so that we can give a unified voice to parents of children with autism.

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The survey went out to more than 34,000 parents on MyAutistmTeam and received record-breaking response times. It’s evident that these questions were those that many of our parents were already thinking and asking themselves and wanted to share their opinions. As our goal was to shed light on the misconceptions currently surrounding autism, our questions focused on the concerns that such an event can have on children on the autism spectrum.

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When asked “To what degree are you concerned about your how your child will be treated at school,” approximately 30 percent of parents reported, “I’m worried my child will be treated differently by teachers and other students” and two-thirds of those parents are specifically concerned that their child will be subject to increased bullying at school because he/she has autism.

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Parents were also asked, “As a parent of a child on the autism spectrum, what are the most important things you want other parents to know about autism, and to share with their children?” Below are the results listed by frequency of answer.

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  • Autism is not a mental illness, it’s a neurodevelopmental disorder (79% of responses)
  • Kids with autism are more likely to be victims of violence themselves than to perpetuate it against others (78%)
  • Autism is not linked to violence, and it did not cause this tragedy (73%)
  • Be vigilant in making sure kids with autism are not bullied due to misplaced blame for the tragedy (71%)
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To learn more about how you can support your children during this time, visit MyAutismTeam.com and learn from a community of parents just like you. Also visit AutismSpeaks for tips on how to help your children deal with a tragedy.

Having a child with autism can put stress on a marriage. Ask veteran autism parents, “What do you wish you knew then that you know now?” and many say that they wish they’d spent more time maintaining their relationships with their significant others before the relationships fell apart.

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Here are 7 quick tips shared by parents on MyAutismTeam for “keeping the romance alive”.  These are all from parents who have children on the autism spectrum.


  1. Date nights are critical so Plan Ahead

    Take the time to line up respite care or a sitter at the beginning of each month to make sure you get out.  No planning ahead usually means no date. (See below for more on finding autism-friendly respite care and sitters)

    My husband makes it a point for us to have date night at least 2x a month to just be us. Sometimes we only go out for pie and coffee, its not much but it makes me feel like a million bucks.

  2. The Weekday Lunch Date

    My husband and I have a weekly lunch date while my son is at school.  It’s great because we don’t need to get a sitter, we have time to talk to each other about adult things, and we are not falling asleep! :)

  3. Dedicated Bedtime for Your Child

    Set a fixed bedtime for your child that leaves an hour or two of evening time you can spend together, before you pass out from exhaustion yourself. If your child can’t fall asleep at 8pm, try to build the routine that they still go to their room at that time.

  4. Getting Creative

    Flirting (even by text), and napping when my son naps so that I’m awake when my husband gets home

  5. Non-Autism Talk

    Every week we make sure we have conversations together, and with other adults, that has nothing to do with ASD or our work.

  6. Beware the completely unstructured weekends

    Weekends can be tough. My husband and I typically want to unwind and have no routine, but the lack of routine throws our son for a loop. That leads to way more emotional outbursts and power struggles, making it hard to even think about time together.

  7. Divide & Conquer

    Sometimes the best thing you can do for your marriage is divide and conquer so that Mom gets to time to herself to reclaim her sanity.  A 2009 study showed that Autism Moms have the same levels of chronic stress as do combat soldiers! It’s tough for someone under that much pressure to have anything left to give to a marriage. In some households the Dad is the primary caregiver.  Make sure that person gets some time to recharge!

On Finding Autism-Friendly Sitters and Respite Care

    • Respite care is hard to come by but you may be able to get some hours covered through programs by your state or through your local Easter Seals chapter.
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      Visit the Easter Seals website or search for “Easter Seals” in your city using the MyAutismTeam Provider Directory.

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    • Check out Sittercity.com- MyAutismTeam has negotiated a free trial and a 50% discount for all MyAutismTeam parents on SitterCity.
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      SitterCity.com is a website that makes finding qualified sitters online really easy.  They don’t provide sitters trained in autism, but often you can find sitters who have had experience working with children on the spectrum.  It may just be enough to give you a few hours to yourself.  For more details check out our post on Finding an Autism-Friendly Sitter (and use the link there to get the MyAutismTeam discount).

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  • Use MyAutismTeam to form local autism-friendly babysitting coops.  Join MyAutismTeam and find other parents near you who have children similar to yours and who understand autism.
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    You may be able to arrange something where they can watch your child once a month and you can do the same for them.  The more people are in the group, the more options for sitters.

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Please share your tips on how you keep the romance alive with your significant others!

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