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Archive for the ‘Asperger’s’ Category

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

Most 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.

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!

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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