Laura Shumaker http://www.laurashumaker.com Making life work for people with autism and other developmental disabilities Fri, 27 Mar 2015 20:52:14 +0000 en-US hourly 1 http://wordpress.org/?v=4.1.1 A bump in the road–part one http://www.laurashumaker.com/a-bump-in-the-road-part-one/ http://www.laurashumaker.com/a-bump-in-the-road-part-one/#respond Fri, 27 Mar 2015 20:33:20 +0000 http://www.laurashumaker.com/?p=2418 Author’s note and disclaimer: This post discusses medical stuff, but I am using (mostly) lay terms to describe the experience.
When my son John, who is 22, came back from a summer job in New Hampshire, I noticed a mole on his face that looked suspicious. It was on his right cheek, the same place where he’d had [...]

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Author’s note and disclaimer: This post discusses medical stuff, but I am using (mostly) lay terms to describe the experience.

When my son John, who is 22, came back from a summer job in New Hampshire, I noticed a mole on his face that looked suspicious. It was on his right cheek, the same place where he’d had a mole removed three years before.

“You should get that checked,” I said.

“No, it’s fine, I just cut it shaving.” he replied.

I have a lot of moles (sorry for the visual), fair hair and skin, and my three son have inherited these traits as well, so we are (fairly) vigilant about sunscreen, and monitoring the moles.

After some nagging from me, pointing out that the shaved mole was not healing, John finally had it checked about a little over a month ago. A biopsy of the mole revealed that it was a melanoma. It was a deep, fast growing type said the dermatologist (in so many words).

John did not have the same fear of melanoma that I had. When I was growing up, a man in my dad’s office, Mr. Mollner, died of melanoma and it happened really fast. Then when I was in college, a classmate, the quarterback of the football team, died of melanoma just a few weeks after graduation, only a few months after being diagnosed.

I’d had a melanoma when I was 50 (about 9 years ago) that they caught before it got into the lymph system, which is how melanomas spread. Still, the surgery was traumatic for me as it required a wide excision, and it was on my neck. The long angry scar has faded with age, but I wore scarves for a good five years.

It was clear after reviewing John’s pathology report with the dermatologist that his melanoma was a lot scarier than mine was. He needed a sizable excision around the area around the melanoma (by a plastic surgeon) and a sentinel lymph node biopsy to see if cells from the melanoma were spreading around his body. Other medical types that we shared the pathology report with winced visibly when reading it.

Which scared the hell out of all of us, including my sweet son with the beautiful face who is a friend to everyone.

This surgery happened last week. We are waiting for results. Some results came back that look hopeful but they sent them to Stanford for another look. We are optimistic. I will keep you posted.

By the way. You will notice that John has very long hair. I have been suggesting that he get at least a trim. Or even more than a trim. He smiles and thanks me for my input. He’ll think about it.

But now the hair–or anything else– just doesn’t seem that important anymore.

 

Melanoma

John and big brother Matthew

 

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The “R” Word http://www.laurashumaker.com/r-word/ http://www.laurashumaker.com/r-word/#respond Fri, 06 Feb 2015 00:17:07 +0000 http://www.laurashumaker.com/?p=2402 In recent years, the “R-Word” has been replaced with the world “Intellectual Disability”, and a campaign to raise awareness followed. Read more here.
“Oh, for goodness sakes,” I’ve heard people say, “isn’t it all just a matter of semantics? Don’t be so sensitive.”
This story, from the archives, tells one reason to be *more* sensitive:
***
Matthew is a huge Beatles fan [...]

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In recent years, the “R-Word” has been replaced with the world “Intellectual Disability”, and a campaign to raise awareness followed. Read more here.

“Oh, for goodness sakes,” I’ve heard people say, “isn’t it all just a matter of semantics? Don’t be so sensitive.”

This story, from the archives, tells one reason to be *more* sensitive:

***

Matthew is a huge Beatles fan and asked me if we could go to the music store to buy a Revolver CD. He was wearing plaid shorts, a different patterned plaid shirt, white socks and work boots.

“You might want to change your shirt,” I said. “Your plaid shorts would look even better with a plain shirt.”

“I look good,” he replied, “and we’re not going to talk about it anymore.”

When we entered the store, Matthew saw an entire rack dedicated to Beatles music, and ran over to it exuberantly, bumping into another customer-hard.

He apologized profusely as the customer shook his head.

“What are you,” the customer yelled “a retard or something?”

“I give up,” Matthew replied passively.

I guided Matthew to the cash register, careful not to make eye contact with the irate customer. Matthew has always been socially awkward, and while I’m well practiced at unfortunate public scenes like these, they still upset me. I was grateful that at least this time, Matthew seemed oblivious to the conflict.

As we drove away with his music, I convinced myself that Matthew didn’t know that the guy at the music store had insulted him. I shared the story my family, and they laughed.

“Thank God he didn’t get it,” they said.

But when I put my head on my pillow later that night, I knew that on some level Matthew did get it. God only knows how many times he has heard the “R” word.

I thought back to the time when I was a teenager, and I laughed at a weird boy at summer camp who was walking funny, rocking and flapping his hands. The boy’s brother, who was also at the camp, saw me laughing and glared at me, deeply hurt.

I’ll never forget it.

I’ll bet that as soon as that guy at the music store blurted out that awful phrase, he realized that the woman with Matthew was his mother. He would have apologized if he had the chance.

I’ve already forgiven him.

***
Do you have an “R” Word story?

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Autism FAQ for seasoned autism dads: Advice for new dads? http://www.laurashumaker.com/autism-faq-for-seasoned-autism-dads-advice-for-new-dads/ http://www.laurashumaker.com/autism-faq-for-seasoned-autism-dads-advice-for-new-dads/#comments Tue, 02 Dec 2014 03:17:32 +0000 http://www.laurashumaker.com/?p=2102  
 
 
 
 
 
 
 
 
 

 
From the archives, one of my most shared posts:
I asked, and did I ever get insightful answers.
Don’t blame yourself or anyone else for your child’s autism. Love and support them in their dreams, interests and aspirations…because they have them. Don’t ever be ashamed of them…even if they are 15 years old, 200 pounds of man/boy [...]

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dad

 

From the archives, one of my most shared posts:

I asked, and did I ever get insightful answers.

Don’t blame yourself or anyone else for your child’s autism. Love and support them in their dreams, interests and aspirations…because they have them. Don’t ever be ashamed of them…even if they are 15 years old, 200 pounds of man/boy be proud when they slip their hand in yours as you enter a public place. Grow to love the unique way they think. And realize their is a special genius inside of each one of them that will blossom if their Dad cultivates it.

Craig Curtis

Man up. Be a dad, not just a father. Take your child out into the world, take them to a fenced in play ground every day you get home from work for an hour, bring a book, sit your ass down and pretend you’re reading.  Take your child to a science center, to a farmers market, to church, to football games. They are children and they model you, they do it differently but they do it, so do things with them. Put their toys away when they go to sleep in an organized fashion, line them, stage them in social settings, do it every night. Get time for yourself, and time for your marriage.

Don’t turn over all control to your wife or the child’s mother, she will soon burn out and resent you. If she can’t give up control suggest that she get therapy. Don’t assume that the schools will educate your child, seek outside tutors and programs. If you are the sole financial support for the family or the primary one, go to work, do your job, you are no good to your kid unemployed, if you think it’s too much, man up. It is too much do it anyway, it will get better, there is cake.

If your child is prone to physical tantrums, flailing about and such. Learn how to do a seated restraining hold with your child’s arms arris crossed across their chest and seated in your lap with your legs crossed in with theirs. Hold them until the stop freaking out, until it become an embrace which it will and it may take over an hour some times but it will end in love and not frustration (Dr. Maltz, the first advice and best advice I was ever given) .  Love your child. I have 2 with autism, I was divorced from their mom and received custody of them. They are doing great, both 15 yo very independent, playing sports, interested in friends, and just wonderful people.

Don Sutton

Accept your kids for who they are. Encourage them to be themselves, don’t force them to be someone they are not.

Ron Junk

I have to keep reminding myself of the poem Welcome to Holland. I looked forward to baseball games and Cub Scouts. But we do elevator rides and take tours of the bus barn. Things that he’s interested in. You have to change your expectations and just roll with it.

Jason Wiederstein

Love them the way any child deserves.

Chip McInnis

Go with your gut, it’s never wrong and mostly right. Don’t be afraid to cry, it’ll happen often and it helps. Stop asking “why him?” and start asking “what can i do?”. Whats right for that kid with autism isn’t necessarily right for mine. There are lots of people who want to help, and very few who know how, so figure out who they are and accept their help. Whatever the unsolvable problem/behavior is today… It’ll be gone next year and replaced by another one. And….
Make alone time for you and your partner.

Alex Harris

The child you walked into the DX appointment with is the same one you walked out with. A word does not change your love and commitment to that child.

John Horton

Treat them like the others with patience n understanding.Life will fill in the voids.

Jim Odwyer

Be strong in your love, slow to anger, patient in your prayers..your child is also a child of God.

Jim Harvey Jr.

Love them unconditionally. Allow them to grow. And try to keep up.

Charles Hicks

I know how busy us “autism parents” are, but it is critical to take the time to nuture your relationship with your partner.  Communication is key.  Be on the same page about your plan for your child.  If needed, assign tasks.  Autism can make a couple stronger or it can tear them apart.
There are many support groups out there for parents of children with autism.  Find one that speaks to your approach to your childs condition.  They can guide you to resources that may help you along your journey.

Michael Giammatteo

***

Thank you, dads!

Please keep sharing …

New dads, please keep asking.

 

 

 

 

 

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This is what progress, with autism, looks like http://www.laurashumaker.com/progress-looks-like/ http://www.laurashumaker.com/progress-looks-like/#respond Wed, 05 Nov 2014 18:42:39 +0000 http://www.laurashumaker.com/?p=2355 My husband and I raised our family in Lafayette, California, about 30 miles east of San Francisco, where a popular Art and Wine Festival is held each Fall. For people who don’t mind crowds, chaos, loud (but great) music and hot weather, the Art and Wine Festival is a lot of fun–great food, wine, beer and [...]

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My husband and I raised our family in Lafayette, California, about 30 miles east of San Francisco, where a popular Art and Wine Festival is held each Fall. For people who don’t mind crowds, chaos, loud (but great) music and hot weather, the Art and Wine Festival is a lot of fun–great food, wine, beer and hundreds of booths spilling with art and hand-made crafts.

Would you consider this sensory overload?

Would you consider this sensory overload?

Photo by Tiraporn Olsen, LamorindaWeb.com

I don’t think I need to explain to you that this well loved two-day event has been nightmarish for me over the years, the mother of a son with autism who has wanted to go every year, especially during the impulsive, combative, escape artist years. When possible, we arranged to be out of town that weekend usually visiting my parents who lived in Carmel.  One legendary year, when Matthew was about 15, we stayed home and he went to the event with a mentor/helper type, a brilliant idea of mine that backfired when he accused the over attentive helper of stalking him.

But the past few years, Matthew, who is now 28, has gone to the festival fairly successfully with his dad, and this year, just as the two were headed out the door, Peter stalled to take a phone call, water a plant, find a better hat, swat a few flies and other random activities that people our age get distracted with.

“I’m leaving without you,” Matthew groaned impatiently, “I’ll meet you there,” and he left.

Peter kept dilly dallying,  finally leaving after about 20 minutes–and returning home an hour later without Matthew.

“I couldn’t find him,” he said.  “What a mad house. I’m sure he’ll be fine.”

Sure he’ll be fine. What could go wrong in a mad house?

“I’ll bet I can find him,” I said, trying my best not to sound huffy. I did find him, and he was busy helping one of the bands get set up.

“Go away,” Matthew told me, “I’m not being mean, I’m being independent.”

I walked home (just 5 blocks), and checked back later and saw  Matthew posing at the photo booth with a few old school friends.

A few hours later, I checked on him again, and he was eating pizza and listening to music with his middle school music teacher. Matthew looked happy and relaxed and not nearly as overwhelmed by the crowds, sun, and noise as I was.

Cool.

Not just cool, incredible.

If you were you tell me 5, 10, 20 years ago about the Art and Wine Festival of 2014, I would not have believed it.

***

Later that afternoon, I noticed a voice message from Matthew.

“Mom, I am seriously broke and need 20 dollars. I am in front of Starbucks and seriously need the money now. Meet me here immediately.”

He’d left the message 20 minutes earlier.

I called his cell phone right back. It rang and rang and went to message. “I’ll be right there,”I said. Gosh, he sounded anxious. Was he going to ask passersby for money? I called him again, but it was clear that he could not hear his phone ringing.

I drove my care (4 silly blocks) and parked illegally as close as I could to Starbucks,  dashed over with the 20 dollar bill, but Matthew was nowhere to be found. I called him again. No answer.

I drove home, and Matthew phoned me just as I pulled in the driveway. I have your money! I told him. Where are you?

“I’m still downtown”, he said calmly, “I had a Starbucks card in my wallet and I turned it in for 20 dollars.”

They do that?

“And Mom,” he continued, ” You left me three messages in a row on my phone. That is not appropriate.”

“But I had your money…”

“That doesn’t matter,” he scolded. “You can call a person once and leave them a message, but if you do more than that, it’s bothering.”

“Of course” I said, “I’m sorry.”

He continued his mild mannered tirade with lines like “sorry is not enough” and “I won’t tolerate this behavior,” and “there are consequences”–on and on, repeating what he had heard so many times over the years. It was an endearing and clearly therapeutic rant, and one I will never forget.

You go, Matthew.

***

I’m pretty sure it is not Starbucks regular policy to grant refunds for gift cards, and I am grateful to the barista, who like so many  folks in our community, who have taken the time and interest to understand and appreciate Matthew’s personality.

But I give equal credit to time, maturity, teachers, therapists, family, friends, (great parenting) and most of all to Matthew, who I later learned enjoyed a glass filled with half wine and half water just before walking home after a successful day.

***

My book A REGULAR GUY: GROWING UP WITH AUTISM is nearly sold out (in paper-forever available digitally)

Order your copy here.

Read me on SFGate, Huffington Post, and follow me on Facebook and Twitter.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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Autism, disabilities, and talking about sex and sexuality http://www.laurashumaker.com/autism-talking-about-sex-and-sexuality-with-adults-with-developmental-disabilities/ http://www.laurashumaker.com/autism-talking-about-sex-and-sexuality-with-adults-with-developmental-disabilities/#comments Wed, 17 Sep 2014 00:00:21 +0000 http://www.laurashumaker.com/?p=1186 Did I get your attention?
If you are the parent of a child/teen/adult with a developmental disability, you probably:
a)  Cringe at the thought of trying to explain things in a comprehensible way
b) Wonder if sex will ever be an issue (Spoiler alert. It will.)
c)  Worry about your child’s safety
d) Wish there was more information and research [...]

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Did I get your attention?

If you are the parent of a child/teen/adult with a developmental disability, you probably:

a)  Cringe at the thought of trying to explain things in a comprehensible way

b) Wonder if sex will ever be an issue (Spoiler alert. It will.)

c)  Worry about your child’s safety

d) Wish there was more information and research on all of the above.

I interviewed Leonard Magnani, MD, PhD, an expert in the field of educating individuals with disabilities about sexuality a few years back when I was profiling speakers for UCSF’s Annual Developmental Disability Conference. It was one heck of a great interview, so I am repeating today.


Dr. Magnani is a  Family Practitioner and Medical Director at the Alta Regional Center.

__________

Q: It seems that there are fewer women than men with developmental disabilities. In my 25 year old son’s day program alone there are zero women (and he is not happy!) Have you heard this complaint from your male patients?

A: For some developmental disabilities, like Autism Spectrum Disorders, there are more males impacted.  However, world wide studies show that more women have developmental disabilities than do men.  Women in all countries receive less services, in part because they and their caregivers are less aggressive in speaking out, and in part because they are more socially sheltered even in progressive, Western countries.  In studies of status, a young girl or women with a developmental disability, few financial resources, and minority group ethnicity, is ranked lowest on the list.

Q. I know that many parents of individuals with autism are afraid to talk about sex for fear that their children will obsess about the topic. How would you respond to that fear?

A. When talking about sex and developmental disabilities, I sometimes show a slide with a pink elephant in the living room.  Underneath I ask, “What elephant?”  No one wants to confront the fact that we are up against human evolution and physiology.  This is analogous to grief reactions:  some caregivers wishfully think, “Out of sight, out of mind,” and remove all pictures of the person who is no longer with us. 

The fact is that almost all of mind, all of thinking, is unconscious.  It may take weeks or months, but the brain will react to the absence of familiar eyes, a well-worn voice or a special person’s reassuring touch.  Grief is a physiological reaction and the mind and body do best when there is continual story telling and remembrance of the departed.   Sexuality is also, of course, physiological; the body and mind will react to sexual yet unconscious thoughts, feelings and sensations whether or not it’s “out of sight.” 

Boys more than girls will discuss sexual issues with their peers, and the society at large is filled with provocative images.  Talking about sex in a systematic and thoughtful way prevents acting out and other unhealthy behaviors, just like talking about grief leads to healthier outcomes.  Furthermore, in the case of sexuality, the strongest defense against sexual abuse is sex education.

Q. Are individuals with developmental disabilities having sex?

A. What we are dealing with is one of our species strongest drives.  There are books co-authored by individuals with intellectual disabilities, and written by people diagnosed with an ASD or cerebral palsy, that discuss their interest in relationships, including dating and sexual relationships, and the problems they’ve encountered and overcome.

Q.  What about birth control?

A. Birth control in most instances is a key part of sex education, whether the caregiver’s emphasis is technological (for example, pills and physical barriers to conception), or philosophical or religious (i.e., the promotion of life-long abstinence).   In recent years, the rights of individuals with developmental disabilities are finally coming to light.  Forced sterilization of men with a diagnosis of Down Syndrome no longer receive popular support.  Nevertheless, there is great variation State-to-State concerning how easy or difficult it is for a legal guardian to obtain forced sterilization of an adult with a developmental disability.

Q.  How early should parents talk about sex?

A. Sex is much more than intercourse, and we all know that.  If we define it as any kind of physical contact with a non-family member friend, like holding hands or kisses on the cheek with a special friend, then the earlier the better.  The “Good Touch-Bad Touch” and the “Circles” educational formats have learning guides for preschool and kindergarten children.   Teaching a child that it’s okay to hug Uncle Harry but it’s not okay to hug the Postman that way, is sex education.

Q.  The best way to talk about sex?

A. That’s the meat of the issue.  The best advice is to not try and reinvent the wheel.  There are many good programs that have workbooks, DVD’s and other teaching aides for parents and professional educators.   

Q.  How can parents and caretakers supervise/facilitate relationships with the opposite sex?

A. A key behavior modification principal is to be proactive and to limit the antecedent conditions that produce undesirable outcomes.   Knowing where your child is and who they are with and who the parents are of those they are with, is the bedrock of adolescent and teen parenting.  Finding and working to develop peer social groups are difficult tasks but readily doable.

Q.  It seems that there  is very little literature or research out there as to how to teach people with autism how to behave appropriately in terms of their own bodies and other people’s as well. Why?

A. Times are changing and the large population of children diagnosed with an ASD in the past 15 years are now becoming young adults.  There are now books, group simulations and social stories designed to help people with autism develop the behavioral patterns that foist healthy relationships.  A difficulty faced by those with an ASD (that isn’t encountered by some others with a developmental disability) is the inability to recognize subtle facial expressions, body posturing or gestures.  Most communication is nonverbal, and this is so very true for friendships and relationships.  It’s a challenge, to say the least.  But again, there is a literature and proven expert guidance, so no parent has to go it alone.

Q. Our children/teens/adults are vulnerable. How can we make sure that they are not being abused sexually? How do we keep them safe?

A.We have to monitor the monitors.  Caregiver abuse is more common than we want to admit, as evidenced by the past admissions of the Catholic Church, and by the current University scandals.  The best defense is sex education throughout a child’s life.  The worse thing to do is to begin education after an abuse, sending the message that the child did not do the right thing.  There is only one strategy following abuse, support the victim as much as possible (and expose and punish the perpetrator).

Q.  What do you think is the most common misconception that people have about sexuality and the developmentally disabled?

A.Those with a diagnosed developmental disability tell us all the time:  their sexuality and sexual needs are no different than those of the general population, but no on seems to listen.


 

You may also want to read a story I wrote on the topic for Thinking Person’s Guide to Autism.

Also, check out ASAN’s Healthcare and Transition Toolkit.

________

A REGULAR GUY: GROWING UP WITH AUTISM is almost sold out (in paper.)

Click here to read first three chapters
Click here to order

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How to Succeed at Inclusion http://www.laurashumaker.com/how-to-succeed-at-inclusion/ http://www.laurashumaker.com/how-to-succeed-at-inclusion/#respond Thu, 28 Aug 2014 15:08:36 +0000 http://www.laurashumaker.com/?p=2323 Special Education FAQ: 
“My son, who has autism, just started school. He was supposed to be in an inclusion class, but they moved him after 3 days because he kept trying to leave. I guess he’s happy in his small special-day class, but I don’t want to give up on inclusion. Any suggestions?”
Answer: I’m turning this one over to my [...]

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Special Education FAQ: 

“My son, who has autism, just started school. He was supposed to be in an inclusion class, but they moved him after 3 days because he kept trying to leave. I guess he’s happy in his small special-day class, but I don’t want to give up on inclusion. Any suggestions?”

Answer: I’m turning this one over to my friend Russ Ewell,   the CEO of Digital Scribbler, and Founder of E-Soccer. Russ is also Founder of Hope Technology Group. 


 

“Progress is a nice word. But change is its motivator. And change has its enemies.”?-Robert F. Kennedy, In The Pursuit of Justice

My family and our supporting relationships have spent over twenty years building an inclusive community.  We have had to overcome obstacles, misinformation, and resistance from the always present enemies of change.  We discovered there was purpose in our pain, as each stage of progress brought us closer to our dream.   Today we are living this dream and hope we can inspire you to do the same.

Successful inclusion begins and ends with our capacity for valuing others.  We cannot include those we do not value.  Fortunately, we can learn to value others, even those we see as different or less.  Those of us who want to experience this type of inclusion must teach, educate, and inspire.   This inclusion education takes place at home, in the community, and in the classroom.

1. Successful inclusion starts at home

“You must be the change you wish to see in the world.”?-Mahatma Ghandi

If we struggle to accept our own children, we will have little hope of inspiring others to accept them.  Our acceptance usually boils down to a choice between discouragement and destiny.  Either we hold on to disappointment and live in perpetual discouragement, or find purpose in the pain.  When we find purpose in the pain, we are making our children part of our lives rather than treating them as a disruption.  We are practicing inclusion!

2. Successful inclusion takes initiative

“The easiest thing is to react. The second easiest is to respond.  But the hardest thing is to initiate.”?-Seth Godin, Tribes

When people discover I am a special needs parent they usually have one of three responses.  Some feel empathy for our situation, others are thankful not to have it, while the third group tells me about a friend or relative with special needs children.  Few invite us into their lives, because they have no idea how this could be done.

Responses like these have helped our family discover our purpose.   We want to inspire inclusion.  This means helping typical families know how to include, and special needs families want to be included.  For this vision to become a reality we had to take initiative.

Our first successful initiatives were inclusive holiday parties.   We invited typical kids from our school and neighborhood.   We also invited special needs kids from a variety of programs.  Everything from the food to the activities was customized for inclusion.    These parties were a resounding success, and became our blueprint for creating future inclusive ventures.

3. Successful Inclusion Innovates

”Above all, be the heroine of your life, not the victim.”?-Nora Ephron

When we signed up for our first community sports program, we were given the choice of playing for one team.  This was the team for kids with disabilities.  We had a great time, but after one season we felt something was missing.

The missing element was our children’s typical friends.   Rather than cry injustice we decided to innovate.  Together with several soccer friends of mine we launched E-Soccer.   This was a program where special needs and typical kids learn soccer together.   We took initiative to build the program and it worked.   We started with fewer than 10 kids, and now there are hundreds of kids participating around the world.

4. Successful inclusion persuades

“I would rather try to persuade a man to go along, because once I have persuaded him, he will stick.  If I scare him, he will stay just as long as he is scared, and then he is gone.”?-Dwight D. Eisenhower

Two groups of people are essential partners in our journey toward inclusion.  These groups are teachers and therapists.  Failure to persuade either group limits the possibility of successful inclusion.

Three things fail to inspire people in these groups to become our inclusion partners.  The first is anger.  The second is accusation.  The third is expectation without appreciation or contribution.  If we are going to persuade people to become our inclusion partners, then we must make them friends not enemies.

A great place to start is by replacing anger with understanding, which is done by asking questions rather than making accusations.  These questions can help us get to know people better, and develop empathy for their lives.   My wife is tremendous in this area.  She turns the answers to these questions into birthday and teacher appreciation gifts.

Answers to my questions have helped me better understand their technology or research needs.   This allows me to make a contribution through research to find solutions to their problems, or by securing the technology products they need.

Our success in developing inclusion partners has greatly enhanced our children’s inclusive educational experience.  The creativity and effort of our therapists and teachers consistently exceed our expectations.  In fact, on more than one occasion our children have experienced breakthroughs we didn’t expect, because those working with them were so determined.

The simple truth is anyone can make inclusion successful.  All that is required is to start now, start small, and be persuasive.   You will be amazed by what you and your family can accomplish.

***

Russ Ewell

Russ Ewell

Russ and his wife Gail, Executive Director of Hope Technology School, are the  proud parents of three. Two of their sons have special needs.

Learn more about Russ Ewell HERE

Connect with Russ on TwitterLinkIn, or Google+

A version of this article first appeared on the Friendship Circle Blog

***

Do you have questions? Contact me HERE and I will do my very best to help.

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A brief history of motherhood, autism style http://www.laurashumaker.com/a-brief-history-of-motherhood-autism-style/ http://www.laurashumaker.com/a-brief-history-of-motherhood-autism-style/#comments Tue, 19 Aug 2014 00:10:33 +0000 http://www.laurashumaker.com/?p=1399 25 things about autism mothering, from the archives.
(updated to reflect my current reality)
 
1) My husband and I planned on having our first child after two years of marriage.Matthew beat us by 2 months.

First baby — best day ever.

2) I took Matthew on a job interview when he was eight weeks old because I couldn’t bear to leave him [...]

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25 things about autism mothering, from the archives.

(updated to reflect my current reality)

 

1) My husband and I planned on having our first child after two years of marriage.Matthew beat us by 2 months.

First baby -- best day ever.

First baby — best day ever.

2) I took Matthew on a job interview when he was eight weeks old because I couldn’t bear to leave him with a babysitter.

3) The first person that told me that Matthew, then three, was developmentally delayed was a speech therapist. She was also the first person who didn’t mention how adorable he was.

Dreamy Matthew, age one

Dreamy Matthew, age one

4) My husband and I coached Matthew before his next evaluation with a child psychologist. We read him Richard Scary’s Best Word Book Ever.

5) When the child psychologist confirmed that Matthew was developmentally delayed, I thought that meant he could catch up. I really did.

6) Matthew lined up toys and laughed too hard at sprinklers in the garden. None of the books mentioned this behavior in the milestone department. What was going on?

7) I was angry with Matthew for being stuck on the sprinklers, and the drains, and the lights, and I felt guilty that I was angry.

8)    When Matthew’s baby brother Andy charmed family and friends with his personality and smarts, my love for Matthew deepened.

Matthew (right) with brother Andy

Matthew (right) with brother Andy

9) Andy is now 26. My most cherished childhood memories with him are the walks we took while Matthew was with speech therapist/psychologists/occupational therapists etc.

10) Matthew’s youngest brother, John, was one week old when we tried our first miracle cure, auditory training. He is now 21 and helps Matthew film “rock-u-mentaries”. More about that another time. He is even more patient with Matthew than I am.

44296_1526776282234_3439949_n

Baby John

11) Matthew is WAY more capable than I ever dreamed he would be. WAY. He’s hardest working person I know.

12) It used to ruin my day when people stared at Matthew, but it doesn’t anymore.  I get that my son’s behavior can be stare worthy, and that people are curious.

13) It used to ruin my day when Matthew told me he is lonely….

14) …but I can’t remember that last time he told me that, because he has friends, and a purpose in life.

15)  The year I accepted that Matthew’s autism was lifelong was also the year I found a great therapist. Best thing I ever did.

16) People that used to be wary of Matthew now tell me that he has developed into a delightful young man.

17) The best thing that Matthew inherited from me is my sense of humor.

18) There is nothing more contagious than one of Matthew’s smiles.

19) There are more kind people in the world than there are jerks.

20) I cried at every IEP except for the last one.

21) I never blamed vaccines.

22) I’ve met some of the best people because of Matthew.

23)  In case you wondered, my husband I have stayed together.

Married 28 years (so far!)

Married 30 years (so far!)

24) I am luckier that most.

25) The lump in my throat will never go away.

***

Do you have questions? Contact me HERE and I will do my very best to help.

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You’ll be hooked.

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You know it’s really love when… http://www.laurashumaker.com/know-really-love/ http://www.laurashumaker.com/know-really-love/#comments Tue, 05 Aug 2014 23:03:46 +0000 http://www.laurashumaker.com/?p=2314 I tiptoed into the kitchen a little after 6am to grab a quick breakfast before waking Matthew.  He’d been home for a week long summer break, and would be heading back to Camphill California near Santa Cruz, where he lives and works.
“I’m ready,” Matthew said, and I jumped. He was fully dressed and shaved, a [...]

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I tiptoed into the kitchen a little after 6am to grab a quick breakfast before waking Matthew.  He’d been home for a week long summer break, and would be heading back to Camphill California near Santa Cruz, where he lives and works.

“I’m ready,” Matthew said, and I jumped. He was fully dressed and shaved, a small drop off blood dripping down his chin. He had already packed and loaded the car. We could have breakfast at Peet’s Coffee, he told me, and we could beat the traffic.

It had actually been a very nice week. I had worried, because he was the only one of my three sons home that week, and now that Matthew is 28, most of the friends he has spent time with in years past were either working or were on a vacations of their own.

But he’d kept busy doing garden work, working on house projects and shooting pool at the local bar with his dad. He said it would be fine if I took him bowling (he bowls, I watch as if I am a random woman passing time at the bowling alley) but that he was too old to hang out with his mother.

With warm cups of coffee, hot chocolate and cinnamon twists, we started the hour and half drive talking little and listening to the Beatles. Just as we headed up the winding grade of the Santa Cruz mountains, Matthew told me he might not get married, but that he would like a nice girlfriend. He seemed confident that he could find one, and said that he needed to learn how to get along with girls, to be calm, and not to yell around them.

I nodded casually, feeling anything but casual inside. This was first time I had heard him talk about this topic so hopefully and logically, and without specifying that the girl had to be “hot.”

“You are so smart, Matthew,” I said, “You are funny and nice, and fun to be with. Girls like that.”

“I know,” he said, his brown eyes shining,” and if I was boyfriend and girlfriend with someone, I would want it to be like Dave who works with me at Camphill. Dave and his girlfriend get along really well and cook dinners together, and go to cool places and are so happy. But do you want to know the best thing of all? You have to guess.”

I have guess? Did it have to do with sleeping, or some such topic? 

“The best thing Dave and his girlfriend have an Ace Hardware Rewards Card together,” said Matthew, grinning like he’d shared the secret to true and long-lasting love.”Isn’t that nice?”

***

There was a time when I thought that I could help cultivate friendships–and more–for Matthew. I didn’t believe he could do it himself. But Matthew has his own timetable.

And I have a hunch that there is a nice young woman out there who has an Ace Rewards Card in her future.

***

You might also like:

The Autism Therapy That Worked for Us: Time by Susan Senator

My Thoughts About Autism and Cures by Claire LaZebnik

***

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Do you have questions? Contact me HERE and I will do my very best to help.

FOLLOW ME on FACEBOOK and TWITTER.

I’m also at SFGate and Huffington Post.

Read my book! You will love it. Order it on AMAZON.

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Autism FAQ: Which battles are not worth fighting? http://www.laurashumaker.com/autism-faq-battles-worth-fighting/ http://www.laurashumaker.com/autism-faq-battles-worth-fighting/#respond Mon, 28 Jul 2014 17:42:58 +0000 http://www.laurashumaker.com/?p=2309 “I’m ready,” called Matthew from his room, just as our family was getting ready to leave for a “fancy” family celebration. He emerged proudly, wearing garden boots, a nice pair of pants, it’s top button strained by three plaid shirts (one thick flannel) layered and tucked in.
This look was not going to work, but Matthew [...]

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“I’m ready,” called Matthew from his room, just as our family was getting ready to leave for a “fancy” family celebration. He emerged proudly, wearing garden boots, a nice pair of pants, it’s top button strained by three plaid shirts (one thick flannel) layered and tucked in.

This look was not going to work, but Matthew didn’t back down without a fight.

“I like plaid, and I shined my garden boots.”

When you’re a parent, you become programmed to make the most of teachable moments from the very beginning. “Look! there is a red light! Read means stop.” “We don’t want to hit our friends, even if they take our toys. See how that makes our friends feel?”

But there are times when you have to let things slide, and when you have a child with autism, there are battles that just aren’t worth fighting. I asked parents on my facebook forum to share their battle tales; their stories a reminder of how broad and varied each individual on the autism spectrum is:

1) Food. Picky eating. Everyone has different taste buds so why struggle?

Note: Hands down the number ONE issue that parents of children with autism refuse to fight (but most tried).

2) Clothes. My boy can wear what he wants and what “feels” right for him.

3) It is not worth fighting your child when they don’t want to come in from the rain as long as the weather is warm. They will come in when they realize they are getting all wet and don’t like it.

4) Tying shoes. My aspie just can’t get it and I don’t worry about it. Not a battle I choose to fight.

5) Anything that isn’t life threatening.

6) Potty training.. My son is seven years old, nonverbal, and does not “get” potty training. We adopted him last year from foster care and no one had worked with him on much of anything throughout his tragic little life.

7) That he still watches Barney at 18. I wish he were interested in something more typical/appropriate, but typical and appropriate for an 18 year old boy might be something MUCH worse than Barney.

And my favorite:

8) I’m done telling him he can’t carry hinges and old door knobs around .

I know, it all sounds just a little discouraging, but I have good news. Sometimes when you back off, things work themselves out. When Matthew was a child, he refused to eat vegetables until he discovered ratatouille at age 11, and couldn’t get enough. He was obsessed with airports for years and visiting them wore me out, and then one day he told me he was “done” with airports.

I convinced Matthew wearing just one plaid shirt would be more comfortable. As for the shiny garden boots, they looked just fine.

Which battles do you think are not worth fighting?

***

Do you have questions? Contact me HERE and I will do my very best to help.

FOLLOW ME on FACEBOOK and TWITTER.

I’m also at SFGate and Huffington Post.

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Lightening Up http://www.laurashumaker.com/lightening/ http://www.laurashumaker.com/lightening/#comments Sun, 20 Jul 2014 16:45:49 +0000 http://www.laurashumaker.com/?p=2270 News Flash! Being the parent of a child with autism can be stressful! You know what I’m talking about. Sometimes you just need to lighten up. My story…
Matthew started making signs when he was 13.
When it was my turn to host the Book Club meeting, he would tape a “welcome book club” sign to the mantle [...]

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News Flash! Being the parent of a child with autism can be stressful! You know what I’m talking about. Sometimes you just need to lighten up. My story…

Matthew started making signs when he was 13.

When it was my turn to host the Book Club meeting, he would tape a “welcome book club” sign to the mantle of the fireplace, and my friends smiled politely. When we ordered pizza, the delivery boy would find a sign on the door that read “large cheese pizza welcome.”

During this same period, I hired a college student, Chad, to hang out with Matthew after school. Chad was a good-looking ex-Marine with a big heart who liked to look in the mirror a lot. When he picked Matthew up at school, the eighth-grade girls would swoon.

“He is, like, totally good-looking!” I heard one of them say as the two sauntered off.

I had instructed Chad to take Matthew out into the community, help him learn safety rules, conduct appropriate interactions with store clerks, and work on table manners at the pizza parlor. The program didn’t always go as I envisioned, but most programs don’t, do they?

I knew Matthew was connecting with Chad when signs started showing up. “go away chad.” “chad you’re a girl.” Matthew was exhilarated, downright joyful, about Chad’s reaction to his signs, ripping them down dramatically and then running after Matthew with a squirt gun.

Matthew’s primary method of connecting with people continued to be this kind of teasing, and I told Chad it might not be good to allow it to continue.

“Lighten up,” Chad laughed in return. “We’re having fun, that’s all.”

One day, while I was getting the kids ready for school, my husband Peter and I had some sort of argument. I don’t remember what it was about, but it was one of those arguments not settled before he left for work, leaving feelings of anger to fester all day. By noon I was in such a state that I felt the need to call him, tell him off, and then hang up the phone before he could respond. What made me crazier was that he didn’t call right back to set things straight. I learned later that the poor guy had been in a tense meeting and couldn’t.

By three o’clock, I was psychotic. I had just picked Matthew up from school and learned from his teacher that he had had a hard day. Some students had dared him to go into the girls’ bathroom, prompting the girls to yell “Pervert!”

Matthew had a mischievous smile on his face as he asked me if Chad was coming over today. Yes, he was. Thank God.

While I waited for Chad to arrive, my friend Susie dropped by. She had called earlier, noticed I was on the edge, and wanted to check on me. Before I could tell her my story, the doorbell rang. Probably Chad, I thought, relieved. It wasn’t Chad, but the local florist with a beautiful arrangement of flowers with a sealed note and a nervous, almost frightened look on her face.

“Thanks. I deserve these!” I yelled hoarsely.

She handed me the flowers from Peter and took off before I could give her a tip. The poor thing. I must have looked as deranged as I felt. I’ll stop by the shop tomorrow and thank her, I thought, and explain my situation.

Chad showed up a few minutes later, and Matthew ran out to greet him before he could get to the door. I followed with money for pizza, and off they went. As I walked back to the front door, I saw it: a new sign taped on the front door. In dark, angry scrawl, it read “i hate you chad.”

The mystery of the terrified florist was solved. She must have concluded the flowers from Peter were from a beleaguered husband named Chad.

Susie and I laughed hard and long. We kept trying to pull ourselves together, only to convulse in laughter again, thinking of the terrorized florist.

It was such a blessed release.

Just then Matthew burst through the front door with an impish smile and pizza sauce on his face and in his hair, Chad close behind.

The day, it appeared, had not gone as Chad envisioned. Happily, mine hadn’t either.

***

Do you have a “lightening up” story?

***
This is an excerpt from my book A REGULAR GUY: GROWING UP WITH AUTISM

***

FOLLOW ME on FACEBOOK and TWITTER.

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