Life on the spectrum is better with the right team

New features for MyAutismTeam!

December 13, 2011

Written by Andrew

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Today we added several new features to MyAutismTeam, most notably the ability to add other parents to your team and follow their updates! We created this feature so that parents could follow the updates of specific parents they wanted to stay most connected to. By creating both parents and provider teams, you can follow updates more easily. Don’t worry, you can still stay tuned into what the whole community is posting, only now, when you create teams, you can filter by your team’s updates.  Below is a breakdown of these new features, plus a few past features, and how they work.

Add parents to your team

Wherever you see the add to team button, you can add someone to your team.

This button is displayed on all parents profile pages, as well on the browse parents tab. If you want to add a provider to your team, you can visit the find providers tab and search for someone to add.

When you add a parent to your team, they will display alphabetically on your team page. You will see two tabs here. One that takes you to the providers you have added to your team, and the other for the parents. You will also have a view for recommended parents near you.

So, now that you have parents on your team, you’ll want to follow their updates! To do this, you can either select ‘view my team activity’ just above your parent team members, or you can visit the activity feed and filter by All Activity or My Team Activity. This is located just above the most recent update:

Add Grandparent as a role

We had many grandparents write to us asking if we could add their role to the sign up process.  This was just added so if you would like to change your role, please log in and go to ‘My Story’. Here you will be able to change the role you signed up with.

Q&A

This feature was released about 4 weeks ago, but we never wrote about how it works!

This section was built to allow parents a forum to ask and answer questions of and from the community. Just visit the questions tab on the site, and you can search all available questions, ask your own, browse and answer.

You’ll see a featured question displaying throughout the site, so have fun and start answering some questions or ask one of your own!

As always, please send us any feedback that you might have about these new features or the site in general.

Thanks!

Andrew

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MyAutismTeam Launches First Social Network Dedicated to Parents of Children with Autism

December 6, 2011

Written by Andrew

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Facebook-Meets-Yelp Network from MyHealthTeams Surges Past 12,500 Members,

Unveils Partnership with Autism Speaks

 

SAN FRANCISCO – Dec. 6, 2011 – MyHealthTeams today announced the launch of MyAutismTeam, its flagship social network for parents of children on the autism spectrum. MyAutismTeam is the first social network specifically for parents of children with autism, making it easy to connect with others who have had similar experiences. The network is a Facebook-meets-Yelp style place for parents to share recommendations of local providers, openly discuss issues, share tips, and gain access to local services that they may not have otherwise discovered on their own. Since the summer, the site has rapidly grown from 30 to over 12,500 members, underlying the growing need of parents seeking support and an easy way to find the team of providers that best meets the needs of their children.  MyAutismTeam today also officially unveiled an ongoing partnership with the world’s largest autism science and advocacy organization, Autism Speaks.

Autism Spectrum Disorder (ASD) is one of the fastest growing developmental disabilities today.  According to the Centers for Disease Control, autism affects as many as 1 in every 110 children in the United States. ASD affects an estimated 1.5 million individuals in the U.S. and tens of millions worldwide. Yet many parents still struggle to find the resources and services their children need. MyAutismTeam connects community members with support and personal recommendations from other parents in their local area – a resource lacking in today’s world of social networks.

“Parents of kids with autism constantly worry whether they are doing enough, or are doing the right things to help their children thrive,” explains Eric Peacock, CEO and founder of MyAutismTeam.  “The one thing we’ve learned from parents is that it can take years to build the right team to help your child. We focus on making it easy for parents to learn from others who have been in their shoes, so they don’t have to start from scratch when looking for providers that are highly recommended.”

On the MyAutismTeam site, parents create their own “team” by sharing providers who help them care for their child. The typical team consists of more than just autism doctors and specialists –they include restaurants, schools, piano teachers, babysitters and more. Parents can then communicate and post status updates, generating conversation threads around daily activities like dentist or doctor’s visits, and the not-so-routine like swimming or taekwondo classes. Members can also post on each other’s walls and use the site’s searchable database to find autism-friendly providers near them. For each provider or business on a team, the site lists contact information, and recommendations to make selecting a provider easy.

The largest autism advocacy organization, Autism Speaks, recognized the value of MyAutismTeam before it was built and has established a partnership to provide feedback on the site based on their years of engagement in the autism community. Autism Speaks helped seed MyAutismTeam’s database of local autism providers with data from its own family resource database. Parents on the site can also add providers they use that may not already be listed directly to MyAutismTeam. Today, MyAutismTeam has a directory of over 30,000 autism providers.

“Parents often say they have learned so much from other parents who have already experienced the joys and challenges that accompany life with a child with autism,” explains Lisa Goring, Autism Speaks vice president of Family Services. “Providing access to local information and resources is an important part of the mission at Autism Speaks.  Partnering with MyAutismTeam is one more way we can help empower families with reliable information they can use right now.”

“Someone in the community will have faced the challenges you are facing today and can recommend a great provider, or share tips on what worked for them,” explains Sharon Esch of Albuquerque, who is mother of a 5-year-old boy with Asperger’s.  “The great thing about MyAutismTeam is that you find you’re not alone.”

To build own your team, visit http://www.myautismteam.com

About MyHealthTeams

MyHealthTeams is a San Francisco-based company building deeply engaging social networks for people facing chronic health conditions in the U.S. Combining the social elements of a Facebook with the hyper-local recommendations of a Yelp, MyHealthTeams makes it easy for consumers to easily find the best local providers and businesses that can help them and quickly connect with a community of other people who understand what they face daily because they have been in their shoes.  MyHealthTeams’ flagship site, MyAutismTeam, launched in December 2011 with over 12,500 beta members.  To learn more visit http://www.myhealthteams.com, or build your team at http://www.myautismteam.com.

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What About the Siblings? – 6 Tips from Siblings of Individuals with Autism

November 2, 2011

Written by ericpeacock

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What About the Siblings? – 6 Tips from Siblings of People with Autism

This past Sunday morning I was in Seattle at the US Autism &  Asperger Association Conference and 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.”

If you have tips or great resources for talking with siblings, how to talk to your child’s class about autism, how to prepare for the transition to adulthood, and how to plan for your child’s care once you are no longer able – please share!  You can also raise these topics with parents who have been in your shoes on MyAutismTeam in our new Q&A section.

Read more about siblings and the sibling experience here:
Voice of Autism: A Brother’s Perspective - by Laura Shumaker

Siblings – Part of the Family Issues Portion of the Autism Society website

Autism, Siblings, and the Art of Unconditional Love: An Interview With Lindsey Nebeker on the Thinking Person’s Guide to Autism

Join MyAutismTeam today and learn from the wisdom of more than 10,000 other parents of children with Autism.

Posted by Eric

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Autism, bullying, parenting children with autism, siblings

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7 Tips & Tricks for Parents: Make Halloween Fun for Kids with Autism Spectrum Disorders

October 31, 2011

Written by marycray

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We asked parents of the MyAutismTeam community for tips they have for other parents navigating this year’s Halloween w/ their child on the spectrum. Here were the seven most popular tips.

  1. Practice. Do a practice run of the homes where you plan to trick or treat with your child. Some parents map out the homes they will visit and provide a visual schedule to their kids to get more familiar with the Halloween activities planned for the night.
  2. Avoid large groups. Keep them away from large or loud groups of other trick or treators.
  3. Role play. For young children, have your little one help hand out candy to trick or treators. This sort of role play enables your child to ease into the expectations of trick or treating.
  4. Comfortable costumes. If your child experiences sensory overload, avoid masks. Explore with your child costume options that do not inhibit movement or irritate. Have them try on whatever costume a couple of times before the big night.
  5. Decoration help. If you think your child may be scared of spooky decorations, flashy lights and scary noises, have them help decorate your own home and feel more comfortable. Also, it may be good to avoid those homes that truly go over the top.
  6. Keep it simple. Halloween can be as jam-packed as you want it to be. Sometimes, simply visiting one home that has a pumpkin on the porch is enough. Short sessions out can do the, ahem, trick.
  7. Candy plan. Make sure you have a game plan for how to deal with the candy.  One parent has a “candy buy back” with their dentist, “So he just picks a few things out, and we sell the rest to our dentist who sends it to the troops overseas.”

For more about Halloween with children with ASD, check out these great links:

Tips to Make Halloween Enjoyable for Children with Autism Spectrum Disorders, Autism Society

Have a Merry, But Modified Halloween, Thinking Person’s Guide to Autism

Rethink Autism’s Halloween Tips for Children with Autism, video by Rethink Autism

 

 

Written by Mary Ray, Head of Product at MyAutismTeam

Follow us on Twitter @myautismteam or Facebook www.facebook.com/myautismteam

As always, please send us any feedback/questions that you have! Meet more parents like you in the autism community by signing up for MyAutismTeam.

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10 Providers for Teens with Asperger’s – Recommendations from Parents Who Have Been There

October 21, 2011

Written by ericpeacock

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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 (over parents of aspie kids of all ages), narrowed it down to those with teens on the spectrum (almost 800 parents), 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.

Parents of Aspie Teens on MyAutismTeam

Parents of Aspie Teens on MyAutismTeam

Five 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 of Morristown, 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.”

Five 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.

Equine Therapy

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’shas 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 of Albuquerque, 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 by Eric Peacock, GM of MyAutismTeam
    @ejpeacock

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Teens IQ’s and Brains Can Change – Of Course!

Written by ericpeacock

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“IQ is malleable.”   A recent study published online in Nature and summarized in the Wall Street Journal found evidence that IQ is not fixed (as was once thought), but instead can change over time correlated with changes in the brain.  Specifically the study looked at 33 British teens (the sample was too small to draw broad conclusions for all teens), giving them an IQ test and MRI in 2004 and again in 2008.  What they found is that IQs jumped up or down for about 1 in 5 teens and those changes corresponded to changes in the brain.

There is speculation that the change in brain structure and associated change in IQ is the result of learning experiences.  In other words environmental factors, mental engagement, learning new thing, can all affect brain structure and intelligence.

The quantitative side of me was alert to the small sample size and correlation/causality questions, but my non-scientific, gut reaction to this news screamed out, “Of course it does!”  It immediately made me think of early intervention, of aggressive, hands-on speech therapy, occupational therapy, ABA therapy and all the proven good it does for children on the autism spectrum.   So many of the parents on MyAutismTeam report that early intervention therapy had the biggest impact on their children.   That learning and focused attention matters enormously and I wouldn’t be surprised at all if it alters the brain, and changes IQs (or whatever measure of intellectual potential you wish to measure).   Doesn’t seem like much of a stretch to me at all.  I think time, and larger studies will prove that this is one more reason to fight for early intervention and never give up on our kids.

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Autism, IQ, parenting children with autism, Uncategorized

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iPhones & iPad Shortcut to MyAutismTeam

September 30, 2011

Written by Andrew

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We recently added an icon for you to add to the homepage of your favorite iDevice!

To do this, please follow the steps in this handy diagram: (works for both iPhone and iPad)

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MyAutismTeam, New Features

New Features On MyAutismTeam

Written by Andrew

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Thank you so much to all the gracious parents who gave thoughtful feedback to improve the experience on MyAutismTeam. We’ve added a lot in September, including the ability for parents with more than one child (either on the spectrum or neurotypical “not on the spectrum.”).  As always, please let us know if you have any feedback or suggestions!

The ability to add more than one child to your profile!

Earlier this summer we asked our parents how many had more than one child on the spectrum. 20% of parents who responded to the survey said they had more than one child diagnosed with ASD. Of course there were other parents who said they had both a child on the spectrum and a child not on the spectrum.

Now you can add multiple children to your profile. Just select edit profile, and click on save and add another. This will allow you to add another child to your profile and upload a picture for your kids.

A new, cleaner browse parents page

Now when searching through parent listings, you will have the ability to say hi and check out their mini-bio. Many more features on the way for this one!

Claim a business

Are you an autism provider or autism-friendly business owner? We just added the feature to claim a business that is listed on the site for free. If you are just a business owner without a child on the spectrum, your profile will be a bit limited at the beginning, but we are actively working on news ways for you to engage with the community. If you are a business owner with a child, you will be able to both claim the business and participate with the community.

Mark as spam and block a user

You now have the ability to control your content and the content on the site. By selecting the checkmark in the upper right hand corner of every post, you will have the option to mark as spam, or block that user from engaging with you. If the post is on your wall or written by you, you also have the ability to delete the post or comment from the same checkmark.

Step one: Mouse over the post or comment to see the checkbox.


Step two: Click on the checkbox to activate your options.

Featured parents and teams!

On both provider pages and on browse parents we are featuring parents who have created great teams and shared great stories! Check them out!

As always, please let us know if you have any feedback or suggestions!

Written by: Andrew

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MyAutismTeam, New Features

5 Things Every Parent in the Autism Community Can Learn from Military Moms

September 22, 2011

Written by marycray

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Parenting a child on the autism spectrum is challenging enough. Now imagine your spouse’s job involves moving the whole family to a new state every three years – and your spouse gets deployed to war zones for year-long stints, leaving you to hold down the fort at home.

Such is the case of many military spouses, including Kristin Proffitt of Colorado Springs, CO, and Kristina Matthiesen of Columbus, Georgia. Relocations, single-parenting, lining up new providers, and building new support networks are topics these women know intimately. Kristina and Kristin were kind enough to sit down with me and share 5 key lessons learned in the past few years that are applicable to most parents of a children on the spectrum. At the end, they also share specific tips for parents in the military.

5 Tips for All Parents

Kristin and JJ

5.  Seek Alternatives to Long Wait Lists for Diagnosis – Kristin Proffitt’s son, J.J., was 16 months old when her husband Josh was relocated from a base in Georgia to Ft. Carson in Colorado Springs. “J.J. didn’t take the move well and at 17 months of age, he lost all his words,” explains Kristin. “The wait list to see a developmental pediatrician at Denver Children’s was insane. All told it was going to be about 12 months before we could get a diagnosis. So I looked around and found a private clinic called Legacy Comprehensive Counseling that could get us in within two weeks. I had to do a little negotiation with Tricare (the military’s health plan) to get it covered, but we did it: got the diagnosis, and got J.J. into early intervention services much sooner.”

4.  Start Evidence-based Early Intervention Programs – A report of the U.S. Surgeon General states that thirty years of research on the ABA approach have shown very positive outcomes when ABA is used as an early intervention tool for autism. Like many military parents on MyAutismTeam.com, both Kristin and Kristina have ABA providers on their teams to supplement the services their kids receive through their IEPs. While there are still many insurance plans that do not cover ABA therapy, fortunately for these military moms, Tricare does.

  • ABA Therapy – Kristina: “When we finally switched to a certified ABA therapist in Columbus, the change could be seen within the first week. A true ABA therapist will pinpoint exactly what your child needs to work on and update their goals often (ours is weekly).”  Kristin: “We met our ABA therapist through parent training and got her to start coming to the house twice a week to work with J.J. We have a great rapport with Kelley. She’s the only therapist J.J. refers to by name.”
  • Speech Therapy once a week – “J.J.’s made incredible gains. He’s 3 years old. In November he was just starting to say ‘ball’, but now he has a vocabulary of over 125 words and he’s starting to string together two to three words at a time.”  Speech was also the biggest developmental area for Kristina’s son and the area in which he’s made the most progress.
  • Occupational Therapy once a week – Kristina reports, “We’ve been going to the OT for about six months and have seen a great deal of improvement in my son’s handwriting.” Kristin’s OT focuses on another area entirely. “J.J.’s a ‘sensory seeker’ and a runner with no sense of danger,” explained Kristin. “He crashes into things and people. We have had to put additional deadbolts out of his reach on all our doors to make sure he doesn’t run out and endanger himself. Our OT is helping him with sensory integration.”

3.  Don’t Settle With Providers You’re Not Comfortable With and Trust the Ones You Like – Kristin considers herself blessed to live in Colorado Springs where the special needs services and providers are relatively bountiful. “If you’re not comfortable with you pediatrician or specialist, don’t let Tricare (or anyone else) pigeon-hole you into using someone you don’t want.”

She also points out the importance of being open to the suggestions of providers you have grown to trust. “When J.J. went to school I was convinced it would be best if I were to drive him instead of letting him take the bus. Our ABA therapist encouraged me otherwise, saying the school bus ride would build valuable routine into his day and make it easier for me to drop in at school to observe without him assuming it was time to go home. She was right, and it turns out that riding the school bus is the highlight of J.J.’s day!”

Kristina and her son

2.  Incorporate Fun Extra-Curricular Activities into Your Team – Many parents on MyAutismTeam have extra-curricular activities on their teams – from piano lessons to gymnastics to martial arts. Kristina has a Taekwondo gym on her team. “They work on things like listening, following directions, and of course taekwondo skills in a fun environment that the kids enjoy.”

1.  Reach Out / Don’t Do It Alone – Having moved cities multiple times and faced extended, stressful periods of single-parenting while their husbands are deployed, both women understand the importance of reaching out for help. “You need to find the emotional support in your community – online or locally.”

  • Reach Out Locally: “When you’re moving so much it’s hard to keep putting yourself out there,” explains Kristina who had to move from Texas to Georgia just ten days after receiving her son’s diagnosis of PDD-NOS. “When you have a child that isn’t acting in a socially normal way – it can be even harder to put yourself out there, but you need to reach out. I’m more comfortable around someone who has a child on the spectrum because nothing fazes them anymore! Searching for parents near you on MyAutismTeam is a great way to find other people in your area (military or not) and a place to find new providers. I also turned to the local mother’s club website.”
  • Reach Out Online: Despite being separated by 1400 miles, Kristin and Kristina connected on MyAutismTeam when they saw they were both Army Wives. “I definitely try to connect with other military spouses,” explains Kristin. “I can identify with them more no matter where they are stationed or what branch they are in. I can feel more comfortable with them saying, “My husband is deployed” because they instantly knows what that entails. “
  • (Note: More broadly – we see this trend happening on the MyAutismTeam live feed where geographically separated parents connect to discuss common challenges such as family members blaming autism on “bad parenting”, feeling isolated (another military mom), acting up in school, sleeping problems, feeling overwhelmed by new autism diagnosis, and transition to adulthood.)

Additional Tips for Parents in the Military
Heather Hebdon, Founder of Specialized Training of Military Parents (www.stompproject.org) reports that 1 in 50 children of military parents are diagnosed on the autism spectrum. That rate is higher than the 1 in 110 ratio typically quoted for the United States. The military has been relatively forward thinking when it comes to helping families dealing with special needs. Here are some extra tips Kristin and Kristina shared for parents in the military.

  1. Sign Up for EFMP (Exceptional Family Member Program). The different branches of the military have their own programs. More information about EFMP can be found on the Military Homefront site.  Another great site for military parents is Operation Autism run by the Organization for Autism Research.
  2. Enroll in ECHO – Echo is the Extended Care Health Option, a program through Tricare open to people who need assistance above and beyond EFMP. Having ECHO allows you to get coverage for ABA therapy and more. Kristin reports, “Our EFMP case manager at our on post hospital told us about ECHO. J.J. was automatically approved for it since he already had been diagnosed on the spectrum.”
  3. Become Friendly with Your EFMP Coordinator and the Pediatrician – Kristin: “Get on a very good basis with your pediatrician, particularly if they are on a MTF (Military Treatment Facility) on post, as well as your EFMP coordinator. Dr. Choate, our pediatrician, knows us and knows what J.J. needs. That personal relationship makes your providers want to fight for you. Our EFMP coordinator, Laurie, has been an invaluable resource and member of our team. She knows Dr. Choate and she will talk to him about getting us a referral (like for a speech therapist and OT) when we need it.
  4. Talk to Tricare When You Need Another Referral or Another Options. “You don’t have to settle for the first referral you’re handed .”
  5. Encourage Providers You Like to Register with Tricare so you can continue to work with them and get it covered. Kristin: “We met our ABA therapist, and OT through the early intervention program in Colorado Springs. When J.J. was about to age out of early intervention, we got both of them to register with Tricare so that we could continue to work with them as J.J. got older.
  6. Research New Providers Ahead of Your PCS & Share Your Team for Other Military Parents – Kristina: “I know MyAutismTeam will be really helpful when we are PCS’ing. I will be able to look ahead and see what services are in the area and what people there can tell me about those providers. There’s nowhere else I’m going to get that information, military or not. It makes me want to share my team to help out other military parents who might move to my base.”

You can reach out to Kristin and Kristina on MyAutismTeam.

- Interview Conducted by Eric Peacock, GM of MyAutismTeam. Follow on Twitter: @MyAutismTeam @ejpeacock

Category:

Autism, MyAutismTeam, parenting children with autism, Uncategorized

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Resources for MyAutismTeam

September 20, 2011

Written by Andrew

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Flyers for MyAutismTeam!

Parents have been asking us for flyers to tell others about the site; @Dandelion82 said, “There is a special education meeting at my son’s school each month. I’d love to bring some fliers with me. Is there a way for me to get a file or copy of the flyer some how? I’d love to spread the word about this website. There are quite a few autistic children in my area, but I don’t see many parents listed here. It’d be a great help for us to pool our resources here.”

Here what more parents are saying:

Sharon

Brought the myautismteam flyers to my Partners in Policymaking class today. Hoping it will encourage more folks to check out this great supportive community. @Mary – thanks for sending them! They look great! Making a list of places to take them to around town.

JamesSVaughan

Got the flyers today from @Mary and they look tremendous! Very excited to share them with my community. Thanks again @Mary and keep up the great work! You guys are fantastic!

Below you will find three separate .pdf’s. The first is a color flyer for print. The second is a black and white for print, and the third is a color flyer for display on the web. (click the image to download the flyer)

     
 Flyer-ColorPrint  Flyer-BlackWhite  Flyer-ColorWeb

We will have more coming soon! Stay tuned!

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Uncategorized

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