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Archive for the ‘Autism’ Category

Two Tips for Finding & Working With a Great Occupational Therapist for Autism

OT scissorsMost parents of kids with autism constantly ask themselves, “Am I doing enough to help my child?”  And yet, thousands agree on a specific type of therapy that they feel has helped their child most: occupational therapy.  We’ve asked over 40,000 parents of kids with autism on MyAutismTeam “What therapies, if any, work best for your child?”  Out of all responses, the number one answer was occupational therapy (OT).

When we explored this area more with our parents to find out why OT was so useful, and how to pick the right OT for your child, two tips surfaced:

Tip 1: Finding an OT Trained in Sensory Processing Disorder or Sensory Integration Can Make a Huge Difference for Your Child

Useful skills for sensory overload

“Five minutes with [our  OT trained in Sensory Integration] and we had a wealth of information on techniques for calming [when overstimulated], ideas for a sensory diet [that helps prevent sensory overload], and tools for managing crises.  [For each skill] our OT provided us with a hands-on demonstration for how to work with our child [so that we could do it ourselves].”

The “sensory diet” can be incorporated into the school setting

“Our OT not only explained the sensory issues our son had, but she [also] gave us strategies [and a written 'sensory diet'] so that he can be as independent as possible.  A lot of the activities in his sensory diet can be incorporated into his daily routines.  His school also has a copy, and his IEP states that he can be given sensory breaks when needed.”

Sensory issues impact all areas of day-to-day living

“Both outside and school occupational therapy have helped our now 14 year old son [with everything from] being able to be hugged, to touching food with his fingers, [avoiding] hand cramps from being so forceful when using a pencil,…wiping his mouth with a napkin, [and] putting his face under the shower water.”

Tip 2: Partner with Your OT and Reinforce the Goals at Home  

“Even the greatest OT needs help and support from the family.  Take what the OT teaches and then add skills done at home to reinforce the goal of your child living [independently] in society.”

“You know a great OT when they have a one-on-one with you and they take what you say into the therapy room.  They let you see what they are doing and they give you homework!  OT has to be done at home by you!  It doesn’t start and stop with the therapist.”

“Our OT never made our family feel like we were not doing things right, and she was super supportive in finding answers to the questions we had.  She really listened to what we thought his major challenges were and we worked together from there.”

Warm Reception from OT’s

Last week we shared these results with OT’s who specialize in autism at the American Occupational Therapy Association‘s Annual Conference in San Diego.   They were thrilled to see the response to OT by parents in the autism community and genuinely hungry to hear the parent perspectives and anecdotes about autism and OT.  We were swamped with questions following the talk and really moved by the passion of the OT community to make a difference in the lives of individuals with autism.

If you already have an OT that you and your child love, please be sure to add them to your team on MyAutismTeam.com, today.  If you’re looking for an OT, follow the tips above and start your search by connecting with parents on MyAutismTeam near you to see which OT’s they are using.

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More information on Occupational Therapy

Occupational therapists (OT’s) and Occupational Therapist Assistants (OTA’s) help individuals with autism gain independence and participate more fully in life by integrating cognitive, physical and motor skills.

These skills might include:

- Daily living skills (dressing, grooming, going to the bathroom)
- Fine motor skills (writing and cutting with scissors)
- Gross motor skills
- Playing, coping, sharing, self-regulation, and social skills

By definition, occupational therapy is tailored to the specific developmental needs of the child – and the will evolve as the the child turns into an adolescent and an adult.

Other good reads:

The Autism Speaks 100 Day Kit has a primer on OT and other therapies that is quite useful.

“What to Ask of an Occupational Therapist” – from The Thinking Person’s Guide to Autism offers more information on sensory diets and everything else your OT can help you with.

Category:

Asperger's, Autism, autism therapies, job skills, occupational therapy, Therapy

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MyAutismTeam Reaches 40,000 Parents

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

Category:

Autism

Autism Parents Share: 8 Tips For Keeping It Romantic In A Marriage

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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.

Category:

Autism, Marriage, marriages and autism, MyAutismTeam, parenting children with autism

Music & Autism: How Music Helped One Mother Connect With Her Son

 “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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Category:

Autism, Music, Therapy

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5 Practical Tips for Parents of Kids with Autism This Holiday Season

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.

Category:

Autism, social skills

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MyAutismTeam Parents Speak Out

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.

Category:

Autism, Autism Speaks, MyAutismTeam

7 Tips from Autism Parents on How They “Keep the Romance Alive” with their Spouses

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!

Category:

Autism, autism babysitters, autism respite care, autism sitters, Marriage, marriages and autism, MyAutismTeam, parenting children with autism, Uncategorized

Tagged with:

Finding an Autism-Friendly Sitter

Recently, several parents on MyAutismTeam were comparing notes on how to find autism-friendly babysitters and one mom mentioned the website Sittercity.com as a potential source. I was intrigued.  We’re always looking for good resources for MyAutismTeam parents but wondered if Sittercity, a website aimed at finding babysitters for the mass market, could be of any use to parents of kids with autism?

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I decided to conduct a little test – be a secret shopper so to speak – and the results (explained below) really surprised me.  It may be a great resource for many of you.  We’ve negotiated a free trial and 50% discount for all MyAutismTeam parents so you can try it out yourself.

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The Test

(You Should Try This if You’re Looking for a Sitter)

    • I did the free trial to post my babysitting job and see if I got any responses.
      (My son doesn’t actually have autism, but I wanted to see if it would work for parents on MyAutismTeam).

      “I’m looking for a caring, female babysitter to take care of my 7 year old boy with autism for a few hours on Saturday nights so that I can go on a date with my wife.”

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The Results
  • Within three days I got 7 enthusiastic responses from local sitters who were interested in taking the job.  Four of the seven women actually had direct experience working with kids on the autism spectrum in the past!  The other three were open to learning and/or had experience working with special needs kids.  I guess with 1 in 88 children being diagnosed, there’s a decent chance you’ll find a sitter who has had some experience with autism.
  • I paid for the one month Sittercity membership (that’ll be $17.50 for you) so that I could get the contact information for all 7 women, call them, interview them, record their numbers for future use, and even hire them.
  • Out of that I had 3 names of sitters I could call at any time going forward! That worked out to about $6 to find a qualified, autism-friendly sitter.  Well worth it.
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Note: I ended up doing this again for my own kids (who are not on the spectrum) and found Jenna, a sitter we’ve worked with several times since then. The beauty of this deal is once you’ve found a sitter you like, you never have to pay SitterCity again! I just booked Jenna to sit for us the night of the MyAutismTeam holiday party!

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Not Trained Autism Professionals

Obviously, a sitter you find through this service is not a trained autism professional.  We’re not suggesting that Sittercity will be able to fill that void for you.  But depending on the needs of your child, you may just be able to find someone who can at least give you a chance to:

  • Go on a date with your spouse
  • Attend that office holiday party
  • Go out on New Years
  • Get some time for yourself

If you want to know more about the sitters before hiring them you can actually run a background check on them through Sittercity.

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Test it Out for Free & Please Give Us Feedback

Use this link and you’ll automatically get a MyAutismTeam discount of 50% off should you choose to join Sittercity.  I suggest doing the same test I did.

  • Start with the free trial, post your job, and see if you get any responses you like
  • Pay the $17.50 if you get a good response so that you can interview the sitters.  Make sure you get their phone numbers and email addresses for future use!  You’ll be able to call these sitters up any time you’re in a pinch.
  • Try out a sitter and get some important time for yourself
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Let us know how it goes!  I live in Silicon Valley where adoption of Sittercity is likely higher than in other states, so you may not find the same coverage of sitters that I did.  We want to hear about your experience with this partner.
Email us with feedback on your experience, or make a comment on this blog.

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The more demand there is for autism-friendly sitters, the more likely it is that sites like SitterCity will work hard to find and prepare sitters for the job. We have the ability at MyAutismTeam to use our strength in numbers to help create the market for services like this!  As part of the partnership, Sittyercity has agreed to share some proceeds with MyAutismTeam each time someone becomes a member – thus helping us keep MyAutismTeam free to parents (and free of ugly ads).

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try for free!

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And Get Some Well Deserved Time for Yourself!

Category:

Asperger's, Autism, autism babysitters, autism respite care, autism sitters, MyAutismTeam, parenting children with autism, Uncategorized

Tagged with:

MyAutismTeam Discount for Financial Planning, Special Needs Trust

In researching the blog post Special Needs Trusts, Financial Planning & LifeCare Plans – Planning the Future of Your Child with Autism, we spent a good deal of time interviewing two Special Care Planners from Miceli Financial Partners, Nick Homer and Ken Prodger.

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Nick and Ken are based in San Jose, CA and both come highly recommended from other parents on MyAutismTeam.  Both are affiliated with the Mass Mutual Special Care Program, have extensive experience working with families with autism and special needs (one of them is the father of a child with special needs),  and they serve families all through northern California.  As a pilot test of a program that could expand nationally, MyAutismTeam has established a partnership with Miceli Financial Partners that offers full special needs financial planning at a discounted rate for MyAutismTeam parents.  

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Discount Details:
  • If you already have a will in place – Miceli will meet with you in person and do the complete, personalized financial planning, life care plan, letter of intent and special needs trust for a flat $3,000.  That is a discount of $1,000.  Typically the total cost for those services is $4,000.
  • If you need the complete package including a living will, financial planning, life care plan, letter of intent and special needs trust, Miceli will meet with you in person and take care of everything. The discounted price will be $4,000.  That is a savings of $1800. 
  • In addition, Miceli will share a small portion of their fees with MyAutismTeam for each family they serve – helping us keep MyAutismTeam.com a free service for parents of kids with autism.
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Call or Email Them for More Information

Miceli always offers a free consultation – so you shouldn’t be afraid to reach out to them.   They have a dedicated phone line for families with special needs you can call at (408) 487 -1516, leave your contact information and let them know that you were referred by MyAutismTeam.  If you’re not in Northern California, Ken and Nick have said they’d be happy to talk to you and refer you to one of their colleagues closer to where you live.

If you’d like to learn more – call Miceli at (408) 487 -1516.  You can also email them at specialcareplanning@financialguide.com.

Ken Prodger

Ken Prodger is a Certified Financial Planner providing both modular and comprehensive financial planning.  Ken’s area of expertise is financial planning for those families that have individuals with special needs.  His advanced designation (ChSNC) is the only third-party accredited designation for special needs planners.  Ken was the first person in Northern California to receive the designation from the American College and is still only one of a couple in the Bay Area.

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Ken currently is on the Board of Directors for a local non-profit, Parents Helping Parents; an organization helping special needs families in a multitude of areas.  Ken lives in San Jose and has raised a special needs son; he has the firsthand experience of IEP’s, regional centers and service providers.

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As a member of Miceli Financial Partners Special Care Planning Team, Ken has extensive experience with financial planning issues of families that have children with autism.  Ken is a fitness enthusiast and is active in the community and church.

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Nick Homer

Nick Homer is a Financial Advisor and a Special Needs Planner who is a San Jose native, where he resides with his wife.  Nick has been in the financial industry for the last 11 years.   Nick joined Miceli Financial Partners, a comprehensive & holistic planning firm and agency of MassMutual Financial Group, in 2007.   Nick has extensive experience working with families with special needs and is a member of Miceli Financial Partners Special Care Planning Team.

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Nick was instrumental in organizing & bringing Disability Awareness Night to the San Jose Giants and has served on the planning committee for that event for the last 3 years.  This event has provided 10,500+ people the opportunity to enjoy a free baseball game highlighting the awareness of the disabilities throughout the Bay Area.

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Nick also serves on the committee for Disability Awareness Day (DAD) for the City of San Jose.

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In 2012, Nick was asked to serve on the board of directors for Angels on Stage.  Their mission is to provide children with special needs who have abilities of any type and degree, ages 5-22, the opportunity to participate in an annual professional musical theatre production.

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You can reach Ken and Nick at (408) 487 -1516

Category:

Asperger's, Autism, Financial Planning, MyAutismTeam, parenting children with autism, Uncategorized

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Special Needs Trusts, Financial Planning & Life Care Plans – Planning the Future for Your Child with Autism

“What happens to my child if something happens to me?”   In the category of “questions that wake up parents of kids with autism in the middle of the night”, this one ranks way up there.  It is one of the most talked about questions on MyAutismTeam.   It’s a question with very serious implications for your son or daughter, and it’s a subject that most regular financial planners and estate lawyers are neither trained nor qualified to handle.

Why It’s So Important – Your Adult Child Could Lose Their Government Benefits If You Don’t Put a Plan in Place

Case Example: Last year a family in California lost all the social security (SSI) and MediCal benefits they had lined up for their adult son with autism when his grandmother passed away.  Why?  The grandmother very thoughtfully left more than $30,000 in savings bonds to help take care of her grandson – now in his early twenties.  Unfortunately she left those bonds in her grandson’s name.  To qualify for SSI and MediCal benefits, he must have less than $2,000 in assets in his name. When Social Security caught wind of this inheritance, they yanked the young man’s benefits.  Furthermore, there are measures in place making it difficult to re-establish government services once you have been disqualified (this acts as a deterrent to anyone trying to hide assets).  In the end, the family had to spend down the inheritance on services he used to get covered by the government, and then go through a lengthy process to re-establish his government benefits.  The inheritance caused nothing but stress and hassle for the family – with no tangible benefit for the young man with autism.   Now, imagine that the people who died in this story were his parents – and that they had left their assets to him?  Now he would be without his primary caregivers and would likely lose his government benefits.   No one likes to contemplate these scenarios, but a little advance planning can mean a world of difference for your child.

You’re Not the Only One Who Hasn’t Done This

Sadly very few parents of kids with autism have taken the steps to plan for the future.  An Easter Seals study called “Living with Autism” revealed how big, and how unresolved a problem this has become.  The study involved a survey of about 1600 parents of children with autism.  It was funded by Mass Mutual (the insurance company) which has a whole division focused on people with special needs.    A few things in the study jumped out at me:

  1. Only 12% of parents of kids with autism feel their children will be able to one-day handle their day-to-day finances independently
  2. Only 40% of parents had designated a guardian for that child, or had created a will.
  3. 4 out of 5 parents had not created a special needs trust.

Nearly all of the parents found this whole topic confusing and fully 56% of them did not know of any financial professionals who specialize in financial planning and life care plans for families with a special needs child.  There are 500,000 kids with autism in the United States right now who, by the end of the decade, will be adults with autism.  This has the potential to be a very large problem.

Charting a Course for Special Needs Families

As Ron Lieber wrote in his recent piece in the New York Times, it has taken a “growing number of financial advisors and other professionals who themselves have special needs children” to navigate all the regulations and products out there and chart a course of practical steps parents should take to ensure the financial security and care of their children in the future.  I spoke with some of them.  In short there are a few key steps most parents shoult follow:

  1. Have a plan for your own retirement – Hopefully you’ll live a long, great life.  If you don’t plan for your own financial needs during retirement you won’t be able to help out your child.  No – really.  You’ll have less income, your own health care needs and related expenses will increase, and you may not be physically able to do some of the things for your child that you do currently.  So you’ve got to take care of yourself first.
  2. Create a life care plan (it’s more than financial planning)- As noted autism advocate and mother, Shannon Des Roches Rosa, and Special Needs Financial Advisor, Nick Homer, explain in their blog post “When You’re Gone: Practical Planning for Your Child’s Future“, a life care plan is a “flexible roadmap” that covers your vision for how your child will be cared for when you’re gone, how they’ll learn and grow, and the best short and long-term strategies for quality of life in every area including: food, clothing, shelter, health, finances, family life, entertainment, employment, retirement and more.  It includes a letter of intent that instructs the caregivers appointed in your living will (see the next point) how you’d like them to parent your child when you’re gone.  As Nick Homer says, “It’s the personal side to the plan” and it’s something that you update annually as your child’s needs change.
  3. Create a Special Needs Trust to go along with a Living Will – The purpose of a special needs trust is to provide for the ability to transfer assets to your child without interrupting or putting at risk the government benefits that help provide and pay for his or her care.  A special needs trust is a piece of paper that isn’t funded with any of your assets unless you die.  At that point the assets you leave to the trust (including any life insurance proceeds or assets you may have) go directly into the trust.  The assets are then owned by the trust, not by your child.  The trust is administered on your child’s behalf as you instruct in a written plan.   You appoint a person – sometimes it’s the child’s legal guardian, often times it is a separate professional – to administer the trust on the child’s behalf.  Since the assets go into the trust – your child is able to maintain any government benefits he or she receives.  The Living Will explains who takes care of your kids, who watches over the money, how you want to be treated in case you’re put on life support and so on.  It goes along with the Special Needs trust.

Common Myths

  • Special Needs Trusts and financial planning are only for the rich – Wrong.  If your child gets more than $2,000 in their own name, government agencies could seize the assets and cause the guardians of your child to spend down any assets above that amount before providing any other benefits to the child. If you make more than $50,000 per year, own a home, or have any other kind of meaningful assets you will likely benefit from going this route.  If you’re not sure – you can usually get a free consultation for further explanation (more on that below).
  • I’ll outlive my child and be able to take care of them – Sadly, it’s just not likely to happen.  This is less a “myth” than it is wishful thinking on behalf of many big-hearted parents.
  • It’s not worth the money – It does cost money to do all of the things listed above, but the benefit of avoiding probate upon your death could make this amount seem small.  A living will, special needs trust, letter of intent, life care plan, and financial plan all done by an experienced professional, and tailored to your specific needs, will likely run you anywhere from $3,500 to $6,000.   If you live in Northern California you can participate in a pilot partnership in which MyAutismTeam has negotiated a significant discount for parents (see below for more details).  If there is strong interest from many parent on MyAutismTeam we will expand this program nationally.  Either way – any decent special needs financial planner will start with a free consultation so that you can understand your options before committing to spend any money.

Taking Action 

If you’re reading this and saying, “I need to find someone who can help me do this” – you’re right.  It’s complicated, and is likely worth the money to pay for the help from someone who does this every day.  Mass Mutual’s Special Care Planning Team is a good place to start.  They have special needs financial planners and relationships with the types of lawyers who specialize in special needs trusts.  They can work with you to get the whole thing done.

Special Offer for MyAutismTeam Parents in Northern California

If you live in Northern California you can get a special discount on these planning services.   As a pilot test, we’ve negotiated a MyAutismTeam discount with Miceli Financial Partners –  Special Needs Advisors affiliated with Mass Mutual who are based in San Jose, CA and serve Northern California.  See details of the MyAutismTeam discount here.

If you don’t live in Northern California but would like to see similar discounts negotiated on your behalf where you live – please leave a comment below and let us know!

Category:

Asperger's, Autism, Financial Planning, Uncategorized

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