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A Parent’s Story of Resilience

The following is a personal story written by Amanda, an ambassador of MyAutismTeam, the social network for parents of children of all ages with autism. Below she shares the journey that her family has been on since autism entered their lives almost three years ago. If you are a parent of a child with ASD, go to MyAutismTeam and connect with other parents who ‘get it.’ Thousands of parents from all over the country are here to share not only their stories, but their daily lives: the good days, bad days and the accomplishments!

Amanda pictureI am a stay-at-home Mom, a wife, a lover of everything that sparkles and shines, a bit of a fashionista, somewhat of a diva, an exercise addict (it keeps me sane), and a bit OCD about the cleanliness of my house. I am also the biggest advocate for my son’s needs, his biggest cheerleader and believer! But more importantly I am Mommy to two wonderful boys, who by the way, have too much energy!

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Joey (ASD) is five-years-old now and just entered kindergarten/learning disabled classroom. He is an amazing little boy who has a very tenacious attitude towards work. He lights up a room when he enters it and over the years has touched many hearts. He is my love, he is my life and we are somewhat co-dependent on one another. Joey was diagnosed with autism at the age of two, and we have not stopped working hard since then.  He has been through so much. I hope and pray one day he will be able to tell me that all that I am trying to do for him was worth it.

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The Journey Begins

After Joey was diagnosed with autism I threw myself in head first trying to figure out how and what I needed to do to help my child. At the same time Pete (Joey’s little brother) was a newborn, and difficult to say the least. My husband had just started a new job, and I was at home almost all day, every day balancing therapies, researching therapies, and trying to do my best to help Joey; and just be Mom to both my boys who were both still babies (Joey was two-years-old and Pete was a newborn). As hard as I tried to keep it together, this time of my life was one of the darker times filled with feelings of hopelessness, sadness and depression; at the time, there seemed to be no end in sight.

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Six months after Joey was diagnosed I began to lose my hair. Now to know me, I was one of those girls with Breck girl hair! It was my thing. It made me feel beautiful. I’m not a confident person, have always struggled with self esteem, and when I began to lose my hair I thought, How am I going to make it through this time?

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I went to doctor after doctor, and was initially diagnosed with alopecia related to the stress and the doctors were hopeful it would grow back.  Two months after I began to lose my hair I was completely bald and was diagnosed with alopecia universalis. My whole physical identity had been stripped from me. I lost my eyebrows, eyelashes, and every other ounce of body hair. Nothing remained. I was a blank canvas and completely and utterly lost but I continued on…

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Why?

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For Joey, for both my boys. They needed me and they loved me unconditionally.

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It has been two and half years since I lost all my hair, (I wear wigs) and realize that the strength, hope, belief and love I thought I was giving Joey he was actually giving to me. This journey that Joey and I have traveled, thus far, has been an emotional roller coaster and by the grace of god I have found hope again through my son.

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Today

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We have seen huge gains with Joey, and most recently (this past summer) his language skills have begun to emerge. This has been a very exciting and rewarding time for me.  Because after all the tears and hard work, we are finally seeing progress and I’m hearing his little voice! This past summer for the first time I heard “I uv u”! I do believe that moment will forever be etched in my mind, and on the bad days I will go back to that moment.

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Pete is just as precious as Joey and sure knows how to push buttons. He just entered preschool and loves it. He so desperately wants Joey to be his buddy, and hopefully someday they will form a brotherly bond. Pete shows me not to take things for granted, just as Joey does, and to celebrate all milestones…little or big. My husband and I believe Pete was brought to us to help his big brother.

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Autism came into my family’s lives almost three years ago and I will not lie, it rocked my family to its core. This journey has had high’s so high that the emotion is virtually unexplainable, and we have had lows so low I’m not sure I can get through another day. I’m not sure why autism knocked on my door; maybe it thought I was the Mom for the job? I’m proving to myself everyday that I am strong enough to take what is thrown my way and my Joey, well, he proves to me everyday that miracles do happen. If you believe and hope and hold on to the positivity there is nothing a child cannot accomplish.

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MyAutismTeam Reaches Major Milestone: 50,000 Parents Nationwide!

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MyAutismTeam, the social network for parents of children of all ages with autism, today announced a new milestone of 50,000 registered parents.

 

MyAutismTeam attributes the rapid growth of the social network to pent up demand and word-of-mouth amongst parents of individuals with autism, unique product features based on parent feedback, and partnerships with leading autism organizations.

 

For parents of children (from infants to adults) with autism, MyAutismTeam is the social network for parents to meet other parents who understand the daily ups and downs that come with parenting an individual with autism. Through shared tips, ideas, referrals, and general support, the parents of MyAutismTeam make real and lasting connections with other parents.

 

Since MyAutismTeam launched in 2011, parents have made more than 500,000 connections on the site. From discussions on effective therapies and finding the dentist or barber who “get it,” to tips on everything from insurance coverage to implementing a successful bedtime routine, the parents of MyAutismTeam share openly and honestly about their daily issues, concerns and triumphs.

 

“It’s been amazing to see MyAutismTeam grow from 35 parents two years ago, to 50,000 parents today because it means that more and more parents are finding the support they need,” says Eric Peacock, co-founder and CEO of MyAutismTeam. “However, with estimates that 1 in 50 children will be diagnosed with autism in the United States, we know that are many more parents out there that need to connect with parents on MyAutismTeam. Our goal is to continue getting the word out to all parents who have children on the spectrum, and our partner organizations will play a critical role in that.”

 

Autism Speaks, the world’s leading autism and science advocacy organization, a partner of MyAutismTeam since the community launched, recognizes the value of the connections made by parents on MyAutismTeam.

 

“Parents of individuals with autism are amazing people helping their children live fulfilling and rewarding lives,” said Lisa Goring, vice president of Family Services at Autism Speaks. “MyAutismTeam provides an invaluable community in which parents can support and learn from each other. Our partnership with MyAutismTeam is just one of the many ways we continue to bring the best possible resources to families impacted by autism.”

2013 Top 10 New Year’s Resolutions, From MyAutismTeam Parents

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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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!

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!

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

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!

Discounts for Parents on Great Autism Workshops

At MyAutismTeam we believe that when your child is diagnosed with autism, it should be easy to find the best people around to help you.  With nearly 30,000 parents of kids with autism registering on MyAutismTeam in just over a year, we’re making it much easier to find and connect with other parents just like you.  Many of you have also told us that you’d like help getting access to other services – including parent education and training.   So we are experimenting with identifying and bringing the best autism workshops for parents to you  – and we are working to get you all a MyAutismTeam group discount to boot.  We’ll be testing this out regionally and looking for your feedback. To start, we’ve negotiated a $50 discount (use code MAT50) on a great parent seminar coming to the SF Bay Area:

  1. Evidence-Based Behavioral Interventions for Autism, Asperger’s, Sensory & ADHD – by John F. Taylor, Ph.D.This one-day workshop will provide you with a comprehensive set of user-friendly strategies you can put to work the same day including:
  • Getting your child to sleep within 20 minutes of bedtime without conflict
  • Reducing distraction and fidgeting in the classroom
  • Redirecting anger and reducing tantrums
  • Improving social skills in public, school and home settings

This seminar will be offered in seven greater Bay Area locations: Santa Rosa (10/9), San Francisco (10/10), Napa (10/11), San Jose (10/12), Modesto (10/17), Oakland (10/18) and Sacramento (10/23)

If you’re in the San Francisco Bay Area, we’ve negotiated a $50 discount for parents from MyAutismTeam who wish to attend. Parents using the following reference code MAT50 will pay $149 for the one day seminar instead of the full price of $199. (Note: Parents will not receive continuing professional education credits).

To register please go to the Summit Education Link and sign up using the code = MAT50.

2. Separately, I’ve been invited to speak at another Bay Area autism conference:

Bay Area Autism & AD/HD Conference – Sunday Oct. 28, Lucie Stern Community Center in Palo Alto

The conference mission is to provide support for parents of children with Autism and AD/HD by focusing on the latest research, treatments and therapies both traditional and alternative.  There will be two simultaneous sessions with 5 speakers. Full details are available at www.baautismoutreach.com

 

If you have ideas for other services you’d like MyAutismTeam negotiate for you – please let us know!

Best,

eric

Accidental Insults & Other Social Hazards Facing the Adult with Asperger’s

We received a tremendous response to last week’s blog post titled, Temple Grandin on the Importance of Giving Kids with Autism a “50′s Upbringing“.  It was about helping kids with autism build job skills and Dr. Grandin’s view that the right foundation for building job skills begins early-on in a child’s life by helping him or her learn manners, basic social skills, doing things for others, and basic responsibilities.   This week we fast forward to adolescence and adulthood and focus on the challenges some people on the autism spectrum have processing and interpreting social interactions.  Dr. Michael McManmon has an inside perspective on this topic as he himself was diagnosed with Asperger’s late in adulthood, after raising his own children.   He now runs a program designed to help young adults with Asperger’s successfully manage the transition from high school to college – and also focuses on making sure his students are building job skills.    Dr. McManmom gave us a lot of great advice as we were getting MyAutismTeam off the ground.   In this guest blog, re-used with permission from Psychology Today, Dr. McManmom offers a very personal glimpse into the challenges he faced in processing social interactions and how he has learned to manage them. - Eric

Taming your Tongue – by Dr. Michael P. McManmon

Being diagnosed with Asperger’s Syndrome as an adult, I now realize that I have inadvertently offended many, many people during the course of my life. It seems no one has been immune to the “accidental insults” that come quicker than I can think to stop them. Now that I have developed some insight into why this is, I’ve learned I must work consciously every moment of the day to develop a filter between my brain and my mouth.

Those of us on the autism spectrum can easily misinterpret social situations because we are sometimes unable to filter and process the actions and emotions of others. Our brains can act like slot machines, whirling around trying to create a match from reels of stored information. Learning how to focus on other peoples’ perspective (the act of understanding what they may be thinking or feeling) is the key to successfully navigating through the social constraints of relationships, school, employment, and life.  
Social cognitive learning differences like Asperger’s are abstract and difficult to comprehend. Just how do you teach a person on the autism spectrum something that is generally self-taught throughout childhood and young adulthood? The concept of teaching common, everyday interactions is not only necessary, but essential in developing emotionally and socially appropriate reactions. Like computers, people like myself on the autism spectrum often fare better by analyzing the data of a situation and pairing it up with the expected response. To a certain extent, our knowledge base can serve us better than true emotions; once we learn the rules. By pre-teaching, practicing, and having life experiences of our own, we build our own rules of operation.

In the past, when a member of the opposite sex would smile and say “Hello,” I would have been prone to interpret this to mean that the person is romantically interested. More often than not, this is just not the case (unless you look like Brad Pitt). Due to my misunderstood emotions, and lack of social understanding, it’s been very easy for me to cause pain and embarrassment to myself and to others without even trying. Furthermore, by not having or allowing the insight of friends, family and other trusted sources, my learned knowledge of these types of experiences could become skewed and not reflective of their true meanings.

A simple explanation from a friend letting me know that the person is just being friendly but is not romantically interested can be a revelation to me – or to someone else on the spectrum. We may genuinely misunderstand the situation and need those trusted others to be social translators, mentors and friends.

At the age of 62, I know that my social and emotional regulation skills are still sometimes lacking. I have a self-righteous streak and think that people need to hear what I have to say. I sometimes feel justified in saying things because I believe them to be true, even if my comments may not be appropriate at the time. My ex-father-in-law used to say to me “Michael you are such a smart and talented guy in many ways, why can’t you control your mouth?” I had no answer to this question and felt I had two choices: be an idiot and speak my mind, or shut up. I still occasionally vacillate between the two options and have mixed results.
  As I continue to learn how to understand social situations and avoid accidentally insulting others, I constantly work at creating that filter between my brain and my mouth. My adult children summed it up best when they told me something like, “Dad, Asperger’s doesn’t give you the excuse to keep offending us or make us upset” (except they expressed this with language that is more appropriately reserved for a bar or tavern). Learning the techniques to master these nuances can take time. Utilize your trusted group of individuals, practice real life situations, and listen to the stories of fellow Aspies like me who have finally begun to filter after years of trial and error. Only then will you be able to navigate the social environments of school, your workplace, and your friends and family.

About Dr Michael P. McManmon, Ed.D.

Michael McManmon, Ed.D., holds a doctorate in special education from the University of Nevada/ Las Vegas, a masters in Counseling from Shippensburg University and a masters in Human Development from the University of Kansas. He is the father of seven children from 45 years old to 6 years old. His oldest child was the first interacial adoption in Nevada History. His youngest child is also adopted and has Autism and ADD. He has eleven grand children. He is the founder of the College Internship Program and works with students with learning differences and Asperger’s syndrome. McManmon has worked on curriculum development, staff training, program evaluation, and administering community based programming. He has an inside perspective as he himself was diagnosed with Asperger’s syndrome and grew up in a large family with several individuals on the spectrum. He speaks nationally and internationally on topics related to the CIP curriculum and Aspergers Syndrome. His book Made for Good Purpose: What Every Parent Needs to Know to Help Their Adolescent with Aspergers, High Functioning Autism or Learning Difference Become an Independent Adult was released by Jessica Kingsley Publishers early in 2012.

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