The social network for parents of kids with autism

Archive for the ‘parenting children with autism’ Category

How Do You Do It All?

The following is a personal story written by Alicia, an ambassador of MyAutismTeam, the social network for parents of children of all ages with autism.  Below she shares the story of how she and her family balance the challenges and triumphs of life.  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!

.

Just recently I was asked by a new friend, “How do you do it?” I responded somewhat perplexed. “How do I do what?” She went on to alicia pictureelaborate, asking me how do I raise three young boys, with two on the spectrum, while living on a single income and living with the constant pain of multiple sclerosis? I honestly rarely stop to ponder my situation because honestly I see it as a way of life and not a situation. Soon after, another friend asked me this and then I began to notice the number of parents on MyAutismTeam that were asking similar questions.

.

And then I was asked to do a blog post on the subject. So here it goes, keep in mind I am no writer, I write from the heart, sometimes what I have to say is quite blunt and sometimes it will make you cry but it is what I live every day.

.

Parenthood

.

We entered the role of parenthood on a cold December day. After 12 hours on Pitocin my oldest son (Big Fry) was taken by C-section due to distress. He passed all APGAR tests with flying colors. From birth he was a baby that had wisdom beyond his years and has always had adult-like mannerisms and humor. We contributed this to being the first born, first grandchild on both sides, the only baby among all our friends. He was constantly surrounded by adults therefore he acted like an adult. His only delay was speech which we just assumed was due to us using sign language. When he was just 18 months, we had our second son (Medium Fry) and Big Fry’s response to having a new brother was to potty train himself. Medium Fry was a different story, he was 2 ½ months early and whisked away at birth due to me crashing on the table. He refused all contact (except mine) from birth onward, he refused to breast feed, and he refused the bottle. He was born at 5lbs 2oz and left the hospital four days later at 4lbs 1oz.

.

They refused to keep Medium Fry at the hospital because he did better with me. It was a long rocky road and finally at the age of four Medium Fry received the Autism diagnosis, which was something we had decided around the age of one, but couldn’t get any doctors on-board. This diagnosis didn’t stop us from having a third son (Small Fry) whom was born just one year after Medium Fry’s diagnosis. Small Fry was born with a major but non-life threatening heart problem and severe food allergies. Around that same time Big Fry began to struggle in school. We contributed it to having a new needy brother at home. Lo and behold that was the beginning of all the tell tale signs of Autism in my oldest son. So this is how it all started, but still how do you do it?

.

Life Rules

.

There are three rules to surviving life with children on the spectrum and little did I know that these three rules were handed to me at a baby shower for Medium Fry. I was given a simple blue blanket that had words stitched on three sides; the words were Live, Love, LAF (I will tell you the significance of the misspelling later), with the final side having my middle son’s date-of-birth (my shower was after his birth since he was so early.) These three words have stayed with us through our entire journey.

.

Live In my lifetime I have died twice, neither time were there white lights guiding me on to another place. The first time was horrific, to this day I remember the pain and hate that I felt at that time. The hatred was so intense that I vowed to change my life. I recovered and started my journey in helping children on the spectrum. I was only 14 at the time. The second time was during my middle son’s birth, I remember nothing but my husband tells me that I only returned to him after the nurse declared, “It’s a boy but I must take him.” How can we not live each day as if it’s our last? I want my boys to live a full and normal life, so we live in the moment. We cry when times get tough and we laugh when times are good. We struggle together as one through everything. Some people say I need to let go and let my boys live their own lives but my response to that is I will never let go. I give them space when needed but I’m always there to catch them if they fall. There is a poem my mom would always read me when I was younger. The poem stated the only gift a mother (or father) can give their children is roots and wings. Wings to allow them to soar to their fullest potential and roots to guide them home when they fall.

.

Love is unconditional, love is blind. Love your children no matter what they do. We have no way of knowing the pain they feel, how hard it is for them to do daily life skills. But with unconditional love they can make it through everything. When my oldest son was diagnosed, I cried. The doctor, who knew our family well, looked at me and asked, “Why are you crying? You didn’t cry for your middle child so why do you cry for you oldest?” I said, “This can’t be, I knew something was different with my youngest from birth but my oldest is so normal.”

.

At that point in time I was given the best words of wisdom. The doctor looked at me and said, “Does this one word (Autism) change who your son is, does it change who he will be, and most of all does it change how much you love him?”

.

Does it?

.

Think, do you love your child any less now that you know why they struggle? If you are like me, it is just the opposite; you love them even more. Don’t get me wrong my boys are a challenge but to be honest I find my NT child way more of a challenge than my two on the spectrum. Times get hard but I love them through it. Pull everyone you can into your circle of love, it is contagious. If they see your pure admiration for your kids, they will also feel it. And honestly the more people you have in your circle the better it is.

.

LAF We spell laugh this way because L.A.F. are my son’s initials. Little did we know how much he was going to make us laugh. When you laugh at the little hitches in your life you feel better. Stress goes away, solutions become evident. When times are tough, let your mind wander to a time when your child has made you laugh. If your life is anything like ours, your mind won’t have to wander far. On any given day, I can count the melt downs on one hand. But most days the number of times my boys make me laugh are far more than the number of fingers on my hand. The good does outweigh the bad and we often just need to sit back and remember.

.

So Live, Love, and LAF. My boys were a gift from god and though his plan is sometimes unclear I know he only deals us what we can handle. Put your faith in yourself and know you can handle life on the spectrum.

Sign Up For MAT

Our Story – My Tristan

The following is a personal story written by Juliet, an ambassador of MyAutismTeam, the social network for parents of children of all ages with autism.  Below she shares the story of her family and her son Tristan.  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 triumphs!

He was extremely colicky as an infant. Midnight car rides almost every night, he slept no longer than a couple hours, at most,Tristan during the day, and began digestive issues as young as two months old.  Literally, my husband and I were tired and grumpy all the time hoping this stage would someday be behind us.

Tristan, now 4 years old, hit all his major milestones up until two years old, but there had always been something a little peculiar about my little guy.  He spoke a few words here and there but nothing distinguishable to a non-parent. When Tristan was excited, he would jump up and down flapping his arms. And we just said to ourselves, “oh, how cute! He loves to watch football!”

At 3 years old, when most parents begin preschool preparation I was racking my brain telling myself, “I don’t think my little guy is ready. Actually, I know he is not ready.”  My biggest concern and the anxiety he demonstrated the most was being around others – children, adults, and even family. Socially, I knew he was behind – way behind.

Outside of routine trips to the store ,such as Costco, refusing to be separated by Mommy and the check-out counter, or regular phrases such as “I’m scared” when approached by anyone other than an immediate family member– it was the sum of these situations that my husband and I realized we had to make something happen on our own.

I immediately met with Tristan’s pediatrician, I should note that my concerns were not new to her either, but I pressed it further and she supported our request.  Our next visit was with a Pediatric Neurologist about an hour outside of town who instructed us to contact out local regional center.  After some research of my own, I also decided to contact our local school district to get him tested for academic purposes since he was of school age (being 3 years old).

The tests and evaluations were moving on the fast lane, it was continuous evaluations for 3-4 weeks.  Lucky me, and lucky for my son he loved puzzles and games.  So he was having one party after another for a month. Final assessments came in both from the regional center and the school district within days of each other and both were in agreement that my son had PDD-NOS, known as Pervasive Developmental Disorder – Not Otherwise Specified. It was extensive-wordy diagnosis with an awkward title but we now had an official diagnosis for my son.

In my son’s case, he exhibited most of the elements of being autistic but because of the mildness of his characteristics he did not have Autism, but better put he had Autism Spectrum Disorder.  We shared the diagnosis with the school district who then discussed possible therapies to help Tristan begin moving in the right direction.  They laid out two possible therapy sites both using applied behavioral analysis (known as ABA), and even set up visits for me to the two locations. After the visits, it was clear which would be the best fit for my son.

In order to move forward with the ABA at Applied Behavioral Consultants, ABC School, they had to conduct their own evaluation of Tristan to create a personalized program to fit his areas of needs. Over a period of a month, ABC School finally concluded their assessments and they began Tristan on a “slow start.”  A “slow start” just meant he would begin half day and gradually add on an hour or so until he was able to manage a 8am-3:30pm schedule at five days a week.

Let me tell you mom and dad – the first week was, of course, the biggest transition. Which meant every morning; I would hear my little guy declare, “no school Mommy, no school.”  And for many days, I would do my best to console and reassure him that everything would be ok.  Even though, I too had doubts. Not because I didn’t think we were making the right decision but more else that I too was scared as we were taking this journey together…blindly. As soon as I would drop him off at school, there was clinging to the legs, clothes, screaming, crying – some of that from Mommy too.  Yes, the first couple days I sobbed as I held my daughter’s hand walking to the car hearing my son screaming from inside the building.

Tristan artworkBut all that eventually ended and now almost five months into his ABA therapy – my Tristan is doing amazing.  He was evaluated for occupational therapy (it was recommended at the beginning of the school district evaluations but has improved drastically since then and so was deemed not needing occupational therapy at this time) and she had relayed that he was “the most developed child she had seen in the last ten years.”

Just over this last year, I have come to realize more clearly how blessed and gifted that my son is.  Because of his love to learn, he has exponentially grown in his academics even at four years of age.  And now loves school! In the fall, we enrolled him in a mainstream pre-kindergarten, so with the balance of both ABA therapy and pre-k he is doing wonderfully!

We are so grateful for the amazing specialists, teachers, doctors, and individuals who have had an impact, both big and small, in our lives to create this journey that we’ve been on with our son. Autism Spectrum Disorder has become a blessing in disguise and is a part of who my son is.  And we wouldn’t have it any other way.

If you are the parent of an individual with autism you can join MyAutismTeam for free at http://www.MyAutismTeam.com.

 

Sign Up For MAT

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

10secretshappy08

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.

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.

.

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.
      .

      Visit the Easter Seals website or search for “Easter Seals” in your city using the MyAutismTeam Provider Directory.

.
    • Check out Sittercity.com- MyAutismTeam has negotiated a free trial and a 50% discount for all MyAutismTeam parents on SitterCity.
      .

      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).

.
  • 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.
    .

    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.

.

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?

.

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.

.
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.”

.
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.
.

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!

.

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.

.

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
.

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.

.

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).

.

try for free!

.

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.

.

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.  

.
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.
.
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.

.

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.

.

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.

.

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.

.

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.

.

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

.

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.

.

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

Embracing the Positives & Exorcising the Negatives around Autism – One Dad’s Journey

In this guest blog post, Tom Wailgum, father of twin boys on the autism spectrum talks about how he and his wife have adjusted their communications with each other and with their boys to focus on the positive. – Eric

Never Never Never Never Never – by Tom Wailgum

One of the most challenging aspects of raising children on the autism spectrum is conquering the feelings of negativity that pervade everyday life. It can come from friends or family members. From co-workers. From the media. From strangers in the grocery store. From yourself. I know I’ve struggled with overcoming my own negativity while raising our twin sons, who are on the spectrum.

Does any of this sound familiar?

  • “He can’t do that.”
  • “She doesn’t have the skills.”
  • “He’ll never eat that type of food.”
  • “That trip to the mall with him was just awful.”
  • “Why doesn’t she get along well with others? What’s her problem?”
  • “We can’t possibly go there because it’s not safe for us.”
  • “Why can’t you guys be like everyone else?!”

By its very nature, the “Autism Spectrum Disorder” label can be a severe limiter to the children, teens and adults who are assigned and often stigmatized by the branding—and it affects the parents of ASD kiddos as well. Think about it: When someone says you or your child has a “disorder,” it’s clearly not the same connotation as saying they have a “gift” or “special talent.” (It reminds me of the “incompetent cervix” label the doctors affixed to my wife when she was in the hospital with pre-term labor with our sons. Hey, docs, thanks for making her feel a lot better!)

Looking back, the negativism that I have allowed to envelope our boys’ diagnoses even colors how I remember the momentous and positive steps that have occurred in their development. Instead of thinking, I always knew they’d get rid of those diapers, I’d think: I never thought they’d stop relying on diapers. (They have.) I never thought they’d have as many friends as they do. (They’ve got some good buddies.) I never thought I’d see either of my kids willingly board a school bus in the morning. (I see it every weekday morning.) I never thought I’d see them up on stage, standing side by side with their classmates, singing in the annual spring concert. (They kicked ass.)

The author’s twin boys at basketball.

Never Never Never Never Never.

It’s so hard sometimes to exorcise the “nevers” and embrace the “positives” and “possibilities.” Perhaps that’s due to what stage you’re at, as a parent, in dealing with your child. Perhaps it’s due to the fact that you are relentlessly focused on identifying and addressing those deficiencies in their skillsets—and then attempting to overcome them. Or perhaps it’s because autism can feel like a blessing and curse at the same time.

The question, then, is: How do you change your outlook when you feel like you’re mired in so much uncertainty and angst because no one appears to have the answers to the many questions you have, when you’re wrapped up in so much guilt or anxiety, and when you’re unconditional love is continually rejected by your child?

Naturally, you’ve got to find your own way out of this nexus of negativity. It starts small, as things often do when the challenge is great. For example, after each outing with our sons, my wife and I will review how it went. For the longest time, it was easy for me point out all of the examples of where the boys had done something wrong (there’s that negativity again!).

My wife and I have made the move to first talk up all the great and positive aspects of their social interactions, play dates or serendipitous Target shopping trips, and then focus on just one thing that could have been done better the next time. For more than a year, we have followed the Superflex “Superhero Social Thinking” curriculum, created by Stephanie Madrigal and Michelle Garcia Winner, to help the boys become aware of more appropriate social behaviors that we want them to understand and apply. We have done this in conjunction with the boys’ teachers, specialists and administrators at their school, and it has been a critical factor in making the Superflex program even more effective.

As you might expect, sharing a common language with our boys, via the Superflex methodology, has allowed us to fill in those critical communication gaps that have always existed between my wife and I and our boys. It’s been an effective way to decrease negative thoughts and alter the tenor of our conversations, from repetitive, frustrating incidents to enriching, positive experiences. The change has delivered significant results—for them and me.

Tom Wailgum (@twailgum) is the father of twin boys on the spectrum, husband to a beautiful and caring wife and mother, and curious observer and cataloger of all that this life has to offer. He’s writing a book about his family’s experiences with infertility, premature babies and autism.  You can read his story and ask him questions on MyAutismTeam.    

Temple Grandin on the Importance of Giving Kids with Autism a “50’s Upbringing”

Friday night I had the honor of meeting Dr. Temple Grandin – the noted cattle expert, autism authority, and one of the most famous and successful people on the autism spectrum.  We were both speaking at the US Autism & Asperger Association Conference in Denver and when we met at the speaker’s dinner I told Temple, “I am the co-founder of MyAutismTeam – a social network for parents of kids with autism.”

“Ohhhh” she said.  “Do you know what worries me most about parents of kids with autism these days? They’re not making their children learn enough important job skills!”  And with that, she launched into her case, elaborating on what she means.  “I’m seeing more and more kids, a lot less severe than I was, graduating college without any job skills – and they are ending up living on social security!”

Other speakers started gathering around us to listen as she held forth.  She attributes a lot of her own success to what she calls a “50’s Upbringing” from her mother – a parenting style invoking teachable moments, stretching your kids, and inculcating manners, basic social skills and independence early.  It’s a parenting style she wishes would make a return today – particularly among parents of kids with autism.  I should say that on this particular topic Dr. Grandin is focusing in on kids from the higher functioning end of the autism spectrum and although she refers to herself as an “Aspie” she is quick to point out that she’s come a long way from where she was developmentally as a little girl.

What is a 50′s Upbringing?

Dr. Grandin summarized a “50’s upbringing” as learning the following:

  • Turn taking in conversation and activities (such as board games)
  • Being on time
  • Doing family activities (even ones she disliked)
  • Doing things that pleased other people
  • Manners (saying please and thank you)
  • Rules (particularly learning why her social mistakes were inappropriate)
  • That there is consistency between parents and school – e.g. a tantrum at school translates into no TV at night
  • Basic social skills
    • Shaking hands
    • Eye contact
    • Ordering food in restaurants
    • How to shop
    • “Eccentric is ok, dirty and rude is not”

Examples from Her Own Life

Temple Grandin speaking at USAAA

Dr. Grandin shared several examples from her own life to try to clarify.  I’ve tried to capture those here to share with you (all paraphrased so I won’t put them in quotes.)

  • Learning job skill needs to start early and the transition from learning to working full-time needs to be gradual.  The best way to do that is to always be doing some kind of work where you can learn a job skill.  For me that started as a girl.
  • Mother made us properly shake hands with everyone we met, and look them in the eye.  I’m appalled at how many kids I meet at book signings who don’t know how to shake hands.  You either get the “vice grip or the dead fish”.  Kids need to be taught how to shake hands, and how much pressure to apply when they shake hands.   That’s a teachable moment.   When I was six, Mother made me put on my church dress and serve hors d’oeuvres to our guests – she taught me how to look people in the eye and do something nice for others.
  • When I made a social mistake, was rude, or misbehaved – mother would teach me why (teach me the rule) rather than scold me or say, “No, no, no.”  If I pointed and made a rude comment about an overweight person at the story mother would say, “Temple, it is rude to point at people and make fun of their appearance.”   If your child goes behind the cashier’s counter at the store, replace “No! Johnny come back here right this instant!” with “Johnny, only the clerks can go behind the counter.”  Use the teachable moment.
  • Mother always made us try new things.  At age 13 she got me a job sewing.  I was learning a skill and earning money.  Later, when I was in high school I got my own job cleaning horse stalls and working with horses.  I was learning a skill and becoming very familiar with working with animals.
  • When I was in college I had to rent a house, negotiate rent and live with a roommate.
  • I learned you have to build up and carry with you a portfolio of work.  You never know when you are going to get a job opportunity.   In my first job I used to paint signs.  With each completed sign I could show it to the next potential customer to get another sign to paint.  Later, (as I was getting my consulting practice to the cattle industry off the ground) I used to do tiny consulting projects with the smallest cattle ranches.  I was learning on each one and then I could show that work to the next person.   People thought I was weird, but they respected my designs.  Today you can carry your portfolio on your phone.  (Reader Note:  Incidentally, half the cattle in North America now are handled in a facility using one of Temple Grandin’s designs).

Dr. Grandin elaborates with more examples in her own post and her many books, which are well worth the read.

A Challenge to Parents

This was not a light conversation.  When Dr. Grandin talks in person she doesn’t mince words and she speaks about this topic with the genuine fire in the belly of someone trying to jumpstart a movement.   To be clear, she does not like what she’s seeing.  She wants to encourage parents of kids on the spectrum to make sure they stretch and teach their kids more, get them to try new things and learn new skills (even if the kids don’t want to do it at the time, and even though they may fail at it initially).  She passionately believes it’s never to late to start.

My meeting with Dr. Grandin left me inspired and is causing me to seriously examine how I’m raising my own two neuro-typical children.  I know I could utilize a lot more teachable moments with them than I do currently, and I’m not so sure I stretch my kids and let them safely “fail” enough.   You can weigh in on this topic.  To learn what other parents of children with autism are doing to teach job skills, or to share some of your own teachable moments, please join MyAutismTeam.   It’s free and this invitation is open to parents of “children” of all ages.  Of the 28,000 parents on MyAutismTeam about 35% are parents of teenagers or adults on the spectrum.

The Trouble With Eye Contact

Navigating Asperger’s and reflecting on other learning differences

by Michael McManmon, Ed.D., (originally published in Psychology Today)

SHIFT HAPPENS: Letting go can make all the difference

I was recently speaking with some college students about cognitive rigidity and transitions. We were discussing how, as a young adult on the autism spectrum, shifting to the next stage of their life can be difficult for not only themselves but also their parents. I asked them to attempt to take perspective of the situation their parents are facing.

.

A student in the group raised his hand and stated, “Shift happens!” Everyone in the room had a good laugh. The next day I ordered a dozen or so tee-shirts with the phrase “Shift Happens” in big bold letters across the front, and presented one to the student who had so wittingly coined the phrase.

.

Those of us who work with young adults with ASD (autism spectrum disorders) are often stymied by their rigidity. In addition to teachers and other professionals, it’s important for the parents role to change as their son or daughter transitions or “shifts” into the next stage of their life. The symbiotic relationship that develops in early years between a parent (usually a mom) and their son or daughter with a learning difference needs to evolve and change. These young adults need to be given the opportunity to take the lead and advocate for their needs. Many times they are more capable than you or I even know.

.

I call this “cutting the steel umbilical cord.” It has to be cut from both sides with a diamond blade. If a parent persists with the same supports they provided for their son or daughter in junior high or high school, it can actually work against the student’s progress.

.

The fact is, the more a parent slowly lets go, the better the student does. The key is being able to teach the student to self-actualize. They need to become their own advocate as they shift to the next stage in their life, and the earlier the better. Whatever they can start to do for themselves, let them do it. Show them, don’t do it for them.

.

The biggest problems occur when a parent folds their life around their student and develops their own emotional need to be involved. While this is an important part of parenting a child, it can dis-empower a young adult and may lead to “learned helplessness”. Many parents I speak with have the same worry, that their son or daughter may end up living at home playing video games until they are 35. What I am speaking about is a classic example of a ‘less is more’ type of approach; ‘being” rather than “doing’.

.

It is a real art to know when to help, how much and for how long. Parenting a young adult on the autism spectrum can be challenging and there are no easy answers. Parents can ask themselves when should their son or daughter need to feel the pain or the repercussions of their actions? When should they step in or sit on the sidelines?

.

The sayings ‘calm mom, calm child’, ‘flexible parent, flexible student’ ring true. Taking care of oneself is crucial. You cannot give something you don’t have to someone. You are useless to another person if you are anxious, fearful or controlling. Parents can transmit this fear and anxiety.

.

An adolescent with special needs benefits from a parent who is healthy and clear minded. If parents take proper care of their own personal needs, they will be in a better position to help their son or daughter make the shift to independence. By modeling a peaceful, healthy lifestyle and resisting the urge to continually step in and fix problems for their son or daughter, their young adult will have the best chance for long term success.

.

When a young adult is beginning to shift or transition to the next stage, a parent can slowly let go and focus on taking care of their own needs. Like the flight attendants say “put your mask on first before your child’s”.

.

Originally Published on Psychology Today

Dr. Michael McManmomMichael 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.

School’s Out for Summer — But Fears of Regression Looms for Parents of Kids with Autism

“I Hate Summer” was a recent post by Laura Rossi Totten on The Huffington Post. She writes,

Special Needs Parenting is challenging 365 days of the year. Unlike the shorter winter break or spring vacation, summer is unique because it is long and most special needs children now expect the routine, support, predictability and familiarity of the school year. Frequently, school-age special needs children struggle with the concept of time and that contributes to the confusion and anxiety many children experience during these three months.

What’s a parent to do? What options exist?

For parents who are looking for ways to keep their kids progressing (whether they’re Aspies, high-functioning, or non-verbal), there are few inexpensive options to turn to during the summer months. We recently spoke with Robyn Catagnus, EdD, BCBA-D of Rethink Autism to learn more about the online curriculum they offer parents.

MyAutismTeam interview with Robyn Catagnus, EdD, BCBA-D of Rethink Autism

Q:  The ultimate “transition strategy” by Dr. Peter Gerhardt, President and Chair of the Scientific Council at the Organization for Autism Research — a behaviorist who has taken part in a webinar for Rethink Autism — has been emulated by therapists around the country:

  • If you can teach the skill, teach it
  • If you can’t teach the skill, adapt it
  • If you can’t adapt it, figure out some way around it
  • If you can’t figure out some way around it, teach the neuro typicals to deal.

How does this apply — if at all — to the type of online curriculum Rethink Autism offers parents, which they leverage at home with their own kids?

Rethink Autism also begins with an effort to teach skills directly. Our program includes lesson plans and videos that demonstrate how to teach every skill in an entire curriculum for areas such as expressive language, receptive language, social and emotional, play and leisure, pre-academics, early academics, daily living, and motor skills. Every lesson and video has several ideas for adapting the skill or instruction specifically for your child. The program offers many ways to think systematically about your child’s needs, and allows for simple, effective data collection so you can see how things are working.  The ideas and repeated practice with teaching helps parents figure out ways around issues that arise. The Behavior Tracker module in Rethink Autism is another great tool to work around behaviors by assisting parents with identifying patterns and providing support and interventions based on that information.

Q: What kind of parent most benefits from Rethink Autism?

Any parent who wants to help their child learn new skills or decrease problem behavior could benefit from Rethink Autism. Parents can use the strategies even if they are beginners with ABA, and the program can be used as a source of ideas and everyday strategies, or as an intensive behavioral intervention program.

Q: Is this the same as homeschooling?

Rethink Autism does not require homeschooling. It is a curriculum to address the intervention needs of learners with autism spectrum disorders. It includes easy-to-use lesson plans, videos, data collection tools, reporting, and behavioral tracking and assessment tools. Those strategies and tools can be applied in any learning setting – home, community settings, public school, pre-school, home school, and more. It even helps parents and professionals communicate and document intervention across all those settings, empowering the parent to see all their child’s information and participate in teaching and programming.

Q: If my child has never been introduced to ABA therapy techniques, what should I expect?

You can expect your child to enjoy learning and develop new skills! Positive reinforcement is an important part of teaching with these techniques, so parents learn to engage children in a fun, educational way. Our videos show many strategies that help children learn quickly and effectively, while making very few errors. It is more fun to learn when you are successful and receive recognition or rewards for your efforts. The strategies are also very systematic and thoughtful in order to maximize learning every day. Even if you and your child have never been introduced to ABA, you will find the lessons very understandable, easy to use, and effective.

Q: Is this for parents of young children only? Or only parents of kids who are verbal?

Our lessons address a wide range of skills, abilities, and behavioral needs for children from age 18-months through early adolescence developmentally. There are lessons for children who communicate vocally or non-vocally. The first step is a brief assessment to determine the skill level of your child in various domains, and the program recommends lessons personalized for their needs. The curriculum ranges from skills needed by early learner for the very basics of communication, social interactions, or problem behavior- and the lessons progress gradually to address complex skills in every domain. As your child develops, the program grows and changes with them!

Q: What tips do you have for parents just starting with Rethink Autism’s online curriculum?

I recommend that you start with a few lessons, perhaps two or three. Select lessons that you and your child are likely to do well, leading to success. Be patient with yourself and your child. Most importantly, stick with it! After some practice, the process becomes familiar and comfortable, so you can expand, teaching more lessons and challenging your child to learn even more.

Q: What is Rethink Autism, not?

Rethink Autism is not meant to be a substitute for services or support by a trained autism expert or board certified behavior analyst. Ideally, when possible, our program can be used as a way to enhance team coordination and enhance any direct services a child receives. It is critical to have a clear path of learning, data for decisions, collaboration, and excellent teaching. Rethink Autism provides parents with the tools to ensure these elements of successful intervention for their teams.

Q: What can parents expect after a few months?

Expect to notice your child demonstrating new skills and having fewer problem behaviors. Using Rethink Autism works and parents around the world see meaningful changes after just weeks or months. When your child is learning and there are fewer problem behaviors, it really makes family life easier and more enjoyable. Such outcomes can be life changing for everyone in the family.

Rethink Autism has offered parents from MyAutismTeam a special discounted offer: 25% off the quarterly package price. In the promotional code field, simply type:  MAT25  to receive the offer. You’ll receive a 3-month curriculum to use with your child for less than $180 (plus, a consultation call free of charge). The regular price is $240.

If you try this service offered by Rethink Autism, let us know if it’s helped your child this summer. If it’s effective at helping your child progress, definitely add Rethink Autism to your provider team. We welcome your feedback on all services we bring to the community. MyAutismTeam strives to provide services and products at discounted rates for our parent community. Thank you for your continuous feedback and participation within the MyAutismTeam community.

Follow

Get every new post delivered to your Inbox.

Join 80,738 other followers

%d bloggers like this: