Dear Dave,

Below is my short story about Asperger’s.

The high divorce rate among parents of children on the autism spectrum can seem daunting. The stress of raising a child with Asperger’s can take its toll on a marriage, as anyone in this position knows. However, loving, guiding, and raising our 11-year-old son Griffin has only strengthened my marriage with my husband Tony.

Throughout all the meltdowns, confusing behavior, and unexpected reactions, at the end of the day, the one person who knows my son as well as I do is my husband. We can sympathize with and support each other because we know what the other one is going through. After a long series of visits to several doctors who misdiagnosed Griffin, we were finally referred to an excellent child psychologist who could tell us that, at age seven, Griffin had Asperger’s.

Up until this point, there was a lot of yelling, crying and misunderstanding from all three of us. And no matter which friends or family members I would talk to about the situation with Griffin, I never felt anyone really understood what I was going through. It was only when I would pour my heart out to my husband that I would feel a connection. Tony and I both wanted the same thing, to have Griffin be able to express his thoughts and function in daily life, without loosing our sanity.

There were times I would cry and Tony would listen to me, and vice versa. Sometimes we would both cry. Just being there for each other and knowing that we were both trying so hard to help Griffin strengthened our bond. We would brainstorm together new ways to help Griffin and new things to try that could benefit him. The love we have for each other and the love we have for Griffin was the driving force that made things work.

After the diagnosis, it took some time to accept it. We slowly realized that although things wouldn’t be as we’d always envisioned before we had children, if we stayed committed to our family, things would work out. With much therapy and love, Griffin has come a long way since his diagnosis four years ago. Although we can’t predict what he will be like in 10, five, or even one year from now, we do know that we will be together.

And we never forget that the difficult times have always been out shined with happy, fun times. Griffin’s point or view and how he sees the world is a gift to my husband and I. We have many inside jokes and “Griffin-isms” that only the two of us truly understand. Sometimes in public when Griffin does or says something a bit off, all my husband and I have to do is look at one another and smile knowing our son makes total sense to us!

Having a strong, healthy marriage is one of the greatest things we can give Griffin. He witnesses the love between us everyday which in return helps him feel secure and calm. Griffin cannot control the outside world, and doesn’t always know exactly what he will encounter at school on a daily basis, but one thing is certain: my husband and I will always work hard to provide Griffin with a secure, caring, and loving home.

Bio: My name is Lynn Wick and I am from Sussex, Wisconsin, USA. My son Griffin is 11 years old, and knows way more about computers than I do, as that is his special interest. My husband Tony and I also have a daughter, Sydney who is 9. I have been fortunate enough to be a stay-at-home mom since Griffin was born. Previous to his birth I worked in editing and writing, but have since become a bit rusty with it!

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Ericka Potts is the mother of three children ages 15, 12 and 4. Her son Christopher was diagnosed with Aspergers at age 7. Her youngest son Nathan was diagnosed with Autism at age four. Advocating for and supporting her children have been by far one of the most challenging and rewarding experiences.   Ericka is passionate about helping her sons develop and grow in ways that will show the community that those diagnosed with Asperger’s and special needs have great potential. Ericka also believes that children diagnosed with Asperger’s as well as children on the spectrum as a whole are inspirational and have gifts and talents that our communities need. Here’s her short story:

For the Love of Basketball

Christopher has always struggled socially. He was diagnosed with Asperger’s at age seven. Despite overcoming a multitude of challenges in grade school by far one to the most challenging situations was yet to come in junior high. Christopher loved basketball. He would play for hours in the small driveway of our home. He developed an awesome three point shot. As parents we saw this passion and came along side of Christopher to help him develop the skills to play on a basketball team. After attending a few basketball camps and countless hours of practice we encouraged Christopher to try out for the middle school basketball team.

The tryouts began in November and after a week of daily tryouts; we were not prepared for what would unfold. As with every community there are social hierarchies. Let’s face it there are those that are influential who have developed interpersonal skills and their children often achieve more because of those skills. Christopher went every day of those try outs and played hard but spoke very little to teammates and coaches. When it came time to make the team selections, Christopher was cut from the team. After speaking with the coach and school athletics director it was determined that Christopher was simply over looked because other players dominated either by more basketball skill, height or well developed interpersonal skills that enabled them to work better in a team setting.

The day of the basketball cuts was by far the most devastating day for Christopher. This was mostly because it was clear that by not making the team was mostly due to “not being noticed”. Honestly his basketball skills were quite comparable with the other students trying out if not even a bit more developed. He learned the life lesson that not communicating with others and intentionally working hard to make social connections can cause you to lose much desired opportunities. Let’s Remember Christopher has Asperger’s. One of the key challenges with Asperger’s is social communication. Who would have thought your social communication could cause you to not make the basketball team? Well let’s face it folks. Under developed social skills and weak interpersonal skills have great cost in our fast paced society? We even have an old saying “The squeaky wheel gets the oil”.

Hence you go away without hearing the Inspiration of Christopher’s story. Let me expound on what transpired in the weeks and months that followed the basketball cuts. It was then that Christopher entered the unfamiliar settings of recreational basketball at our local community centers. We sought any and every community center for an opening for Christopher to play basketball with a team. We found one spot. Christopher was faced with showing up and walking into an unfamiliar recreational center with totally unfamiliar peers and coaches.

The first time Christopher had to play in a game; it was hard. Not hard in regards to the actual game of basketball but the hardest was the walk from the car to the actual court. Then we had the introduction to the coach and all the unfamiliar faces of the team mates. At the stage of Junior high there is already a social awkwardness and a vying to fit into social circles. Can you imagine if you had Asperger’s and your biggest struggle was social? We are talking hard stuff people!

Well, with a great deal of prompting and support we made it through the season. We recruited friends and family member we knew cared for Christopher to attend games and cheer him on each week. This helped immensely. After countless practices, games, individual skills, drills and basketball instruction, the following winter Christopher tried out for his high school basketball team. Family and friends waited anxiously for the 3 days of try outs. Christopher was informed he made the team. This time the coach took notice to Christopher’s skills but even more remarkable he took notice to the skills he lacked. He then made it his personal mission to help Christopher develop in his weak areas and enhance the skills he already possessed. By far the greatest reward was social connectedness that being part of a team offered to Christopher.

Communities play a great deal of Influence on kids with social deficits. We can choose to reach out as that Highs school basketball coach did or we can choose to turn a blind eye on what appears to be another person’s inability.

The basketball coaches and school athletic staff has been by far the most significant part of helping Christopher grow socially. Christopher is learning to overcome his social challenges both on and off the court. Go Christopher!

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My name is Rita Decatur and I am the maternal grandmother of a thirteen year old boy with Asperger’s. My husband and I have had full physical and legal custody of Timothy since he was 15 months old. His parents had a very tumultuous relationship which left him neglected and at risk.

We noticed that Timothy was “different” at a very early age but we thought of it as having a very unique personality and never saw it as a negative thing. Four years ago he was diagnosed at the University of Virginia’s children’s Hospital with  Asperger’s Syndrome and significant OCD.

Over the years he developed many quirks and routines but they changed periodically. We had early socialization with him which proved to be very helpful to him later on. He started pre-school at the age of 3 and started playing organized sports at the age of 5.

He did have what Asperger’s referrers to as “one track mind” mentality but he managed to use it on what he was doing at the moment. This developed him into an extremely focused child that became very good at everything he did, but not without exceptional dedication.

Despite the expectation that Asperger’s would interfere with school, he has been and continues to be an honor student. He was just recognized by the United States Achievement Academy as one of the most 6000 outstanding students and athletes in America’s middle and high schools.

The criteria for selection includes academics, citizenship, leadership, attitude and dependability. He was also chosen out of this group as one of about 300 that received an academic scholarship as one of the “best of the best”.

Also, despite being told by experts that he would be clumsy and have physical problems, he placed 5th in the Virginia State Wrestling Championships in his division and weight class in 2013. This year he placed 2nd in the North Carolina State Wrestling Championships.

Although he struggles everyday he also excels in baseball and football. Imagine the most difficult part of playing football is putting on your uniform because you are hyper sensitive to the touch of nylon, not the 200 pound tackle about to take you out!

The experts told us he would have a limited range of interest and have a difficult time making friends. He has a large circle of friends that accept his differences, because that is what real friends do.

He is a three season athlete, SCA representative, published a book, participates in four wheeler competitions, has an orange belt in Taekwondo, enjoys his pets and LOVES to read.

As  a sixth grader last year he was elected by his fellow 6th, 7th and 8th grade peers as the Middle School President. The first sixth grader ever to hold this position.

As President, in his typical serious and dedicated manner, he approached the school board and asked them to fund a study skills class. He collected petitions, contacted the founder of SOAR, and found funding all on his own. This year that course has been implemented in the Madison County, Virginia sixth grade class.

This is not a child that has an elevated IQ or a natural athletic ability. He is living proof that Asperger’s does not define him. He has decided that all goals are achievable, even if you are told by the “experts” they are out of reach. He has managed to turn what the experts call a detriment into an incredible ability to focus on the task at hand and excel.

The only disabilities we have in life are the ones we put on ourselves.

With Pride,
Rita Decatur

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“Running on Empty”

By Laurie Oakes

Ugh Another call from the school. I was already having a bad day at work when I received a
phone call from the school regarding my son’s latest escalation. Stephen was one of the first children in
my city to be diagnosed with Asperger’s Syndrome, and to say we had a battle on our hands with the
school is a vast understatement.

Some of his teachers were unwilling to abide by the IEP (individualized educational plan), and
some were just at a loss as to how to deal with him. The educational technicians were wonderful but
were limited in their authority. The Autism Society in our state was kind enough to retain an advocate
for us who came to a school PET meeting. (For those of you who don’t know what these are, the
experience is somewhere between a root canal and having your knee drained.)

It was implied that Stephen was being “coddled” and “spoiled,” and that his escalations were
“bad behavior.” In reality, the escalations all had to do with change and his inability to deal with it. I
had already explained to the school long before he began attending first grade that I could not change
the vegetable I served for dinner without Stephen escalating.

As we argued back and forth with the school, the autism advocate had great words of wisdom.
She quietly explained that for the “normal” person, we start the day with our glass empty, and by the
end of the day it is about full with frustrations, anxiety, etc. The child with Asperger’s wakes up with
his glass full. Add all the sensory issues, changes, fears and uncertainties, and it was no wonder
Stephen was stressed out!

The key, we all agreed, was getting Stephen to communicate when he needed a break, or to be
refocused, or experienced anxiety. It was then I remembered something our son had done at home. We
had been having an exceptionally tough day with lots of unexpected surprises. I noticed Stephen
drawing the picture of a gas gauge. NASCAR is one of his highly focused interests, so I wasn’t very
surprised. What I did notice, however, is that the needle was pointing towards the ‘empty’ reading. He
was telling me in his own way that he needed a break.

When I relayed this story at one of the painful meetings, Stephen’s ed tech, Bonnie, immediately
flashed a knowing smile. “He draws those in school,” she said, “and it is usually when he is stressed.”
Stephen was still learning how to express himself verbally at this time, but we all realized that this was
his way of crying out to us all. “I need a break! I’m having sensory issues! I am stressed! I am anxious!
I need to be refocused!”

This was a wonderful way of communicating to us what he needed when he was “running on
empty.” Bonnie used these gas gauges often, and it was a great way for her to help him. Yes, he still had
his issues, but he was telling us what he needed in his unique way, and we were finally listening!

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My name is Lissette Velasquez, and I’m a mother of four. My son Brandon (second child) was diagnosed with AS at the age of two.  He is yet to know of his diagnosis till this day, he will be 12 in June.  I struggle with having “the talk” with him simply because I don’t want him to feel labeled. He’s an extremely smart boy!  Very creative!  He LOVES building and creating with his Legos.

When you sent the initial email about writing I was a bit hesitant. As you can imagine I have my hands full with four kids, a puppy, two part time jobs and so on, but I was struggling with something with my son at the moment and I felt like what better way to release some frustration than by writing about it. So here it goes!

One of my part time jobs is working as a teacher aide in the school where my kids attend. I mostly took this job because I knew it would help me get an inside look of my kids (mainly my AS son) day at school. I hoped it would help me stay in tune with activities in school and to keep a close relationship/communication with my sons teachers. Which it has so yay!

After working there for almost a year I began to notice that my son would pace the gymnasium every morning with his book bag on and a mean mug on his face. I observed for a few days and noticed it was just about everyday. How come I didn’t notice this earlier?  Has it been going on the whole time?  I wasn’t sure but one day I said something to him. I advised him to try to talk to someone.

The next day came in again he paced and when he saw me I reminded him so reluctantly he went by a group of his classmates looked at me and then just walked away. I didn’t push it I just let it go then I asked him later what happened and he said, “I got nervous and I couldn’t do it” My heart broke so I said ok no worries. The next day came and again he paced when he passed me I said to him ok don’t talk to another kid but at least go say hello to Ms. Soehl (an old teacher of his) she was in the gymnasium at the time. So he did and it was good. I took a sigh of relief but at least he wasn’t pacing and spoke to somebody.

This very week all the kids in school were ranting and raving about the spring dance. He of course had no interest in going. I mentioned it to him in hopes that this would help him be a lil more social or at least get some kids to see what a great kid he is. He went back n forth about. One day he was going the next he wasn’t.   Finally, he said “mom, I don’t get it what’s the big deal.” At this point I was so tired of trying to convince him to go that I straight said to him,”THE BIG DEAL IS THAT IT IS A SOCIAL EVENT AND YOU HAVE ISSUES WITH SOCIALIZING SO I THINK YOU SHOULD GO!”

I immediately felt horrible after saying this and apologized and told him he didn’t have to go. If he really didn’t want to go. I told him it would be a game time decision and that his brother n I were going if he felt up to it we were leaving at such n such time and if has ready and wanted to go it would be TOTALLY his decision. Well, the day came and he got himself ready to go. He took his lil lego figure with him (I guess it was a comfort thing). I didn’t say a word. All I said to him was that if at any point he didn’t want to be there anymore he could simply just tell me and I would take him home ASAP.

Can u guess what happened next?

HE HAD THE TIME OF HIS LIFE!

He danced the night away!  Every so often he’d come over to me and ask me, “mom am I dreamin.” “This has to be a dream!”  I held back tears to see how much of a good time he was having. Then the unthinkable happened… One of his classmates invited him over for a sleepover!  OMG!  What was that for!  He ran over to me and said, “I was invited to sleep over Kenny’s house mom, I feel so accepted, I have a new best friend!”  Now how could I say no!  Luckily, I knew the mom and felt comfortable enough to allow him to sleepover.  I was so proud of him!

Lissette Velasquez

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“It’s the only way I can turn corners,” demanded my adamant 4 year old. He made this statement after he learned how to ride his bike for the first time.

It was the summer before he started kindergarten. He was 4 years old. We got him a bike with training wheels figuring he’d use those for a bit. That wasn’t going to happen in his world. He thought he was too old to learn how to ride a bike at 4. In his mind, he should have done it sooner. We just brushed it off as him perseverating on something new.  He had taught himself how to read at 3, so who was I to tell him he couldn’t do it?

He complained about the training wheels after about five minutes. So, up went one wheel.  One wobbly ride later the more heated complaints started. His bike was broken because it was wobbly, and he couldn’t stop properly. The bike couldn’t turn corners. And it was broken because in his mind, “It just was!” Off came the training wheels. He got right back on with a very determined look.  He took off all on his own, but corners were especially difficult. They caused some major meltdowns. The only thing in his mind that helped him turn corners, only right ones, was if he lifted up his pinky finger from the handle bar. It had to be his right hand pinky finger. The left one was no good. It looked like he was ready for royal high tea.

My four year old was determined to ride straight and take corners…no matter what. In his head, only one thing was going to work. We eventually all laughed once he figured it out himself that his pinky wasn’t doing the work.

We’re taking one little step at a time and really working hard as a family to enjoy the “quirkiness” that comes with our son’s way of thinking. To be honest, sometimes it’s very hard to say that I wouldn’t want it any other way. But during the tough times, I think about those warm summer days with his right pinky high in the air, and it makes me smile enough to smooth over some of the new bumps we are facing. We see how amazing he is, and when he’s ready, I really hope he will, too!

Jennifer Covell

P.S. This is a very true story. My son is 9 years old and has Asperger’s Syndrome.

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I always knew there was something a little…different about my son. Call it mothers instinct or intuition, doesn’t matter. I wasn’t scared, but I knew I had some challenges ahead of me. All I could hope for was that I was built with strong enough stuff to keep the strength I knew would be needed to be the rock I knew I would always have to be, without fail.

At age 5 my son was diagnosed with Aspergers Syndrome. Relief at having a diagnosis, fear for his future, a surge of love for my special little boy. All normal reactions from a mother.

Of course I read everything I could on the subject. I thought “it’s going to be ok, we can deal with this”. I started right away teaching my son coping mechanisms and interpreting facial expressions and all those little tips that are given to parents with Aspie children. Of course it was all a raging failure at first because he was 5, what can I expect.

The one thing that kept repeatedly invoking actual fear in me was the empathy issue. I frantically researched this issue because, in my mind, empathy is what makes you a “good” person. I have already experienced my son’s lack of empathy, in spades.

He is mean to his little sister.  People always say”oh that’s normal”. This was not normal. He would hurt her and I was petrified because there didn’t seem to be an ounce if guilt. Now he did feel awful bad when he got caught and got in trouble for it.  In digging through the material on the subject I was desperately looking for a different answer.

In moments of despair, after a bad day with our son, my husband and I would debate the difference between Aspergers and Sociopathic behavior if there is a lack of empathy. I couldn’t believe it though. In one of our follow up appointments with our child psychologist it was stated that he may never have empathy but may learn to portray empathetic behavior. I was heartbroken. I knew my son was a good boy and I knew he cared, I just knew it.

Over the past couple years our work continued in learning how to read other peoples facial expressions and how to express one’s own feelings and substituting breakdowns with words. Progress was noticeable. My son was somewhat nicer to his sister and even started playing with her.

He was still mean to her but not as bad and not as often.  In conversations with him separate from his meltdowns he would be able to distinguish between right and wrong. This does not stop him from acting out impulsively but in time I’m sure it will lead in that direction.

What never felt true to me though was the empathy thing. It was hard to come up with specific incidents that showed he truely did feel others pain or did have guilt for his actions but I knew it was there.

In one of Dave Angel’s articles was a breakthrough concept that people with Asperger’s do, in fact, feel empathy. The difference is how they respond to this emotion. They may be portrayed as not having empathy because they don’t act in the same way as others or in a manner which is expected. But that does not mean they are lacking in this emotion, just the emotional response.  This was what I had been looking for.

This is, what I believe, the truth.  This proved the fear I had been harboring was unnecessary and unfounded.

Not long after, my son himself proved to me that I had nothing to fear. Since he was 4 years old his favorite book was “The First Encyclopedia of the Human Body”.  He is now almost 7 and we still have long talks about biology because that is where his interest lies.

I am a type 1 diabetic. Because of this my son has frequently observed me injecting myself with insulin. One day he was watching this very intently with a disturbed look on his face. I said “What’s up buddy?”  He responded, “Mama, I’ve decided that I want to be a scientist when I grow up”. I said “that’s great. Why do you want to do that?”  He pointed to the bruise on my belly and said “I want to be a scientist when I grow up so I can find the cure for diabetes and you won’t have to do that anymore”. I hugged him as long as he would tolerate it.

So now I ask “Is my son empathetic?  Yes, I think so.”

My name is Alicia Mayo. I have a 6 year old son diagnosed with Asperger’s. I have a 4 year old daughter who is happy, outgoing and has no diagnosis to speak of.   I am 37 years old and since my son’s diagnosis have decided that I very probably have Asperger’s as well.

Alicia Mayo

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To be a mother can be challenging for anyone and maybe more so if your child has Asperger’s.

Things that are difficult are things like witnessing the frustration my son Tucker has with doing homework and the screaming in anger when help is offered; the lack of interacting with kids the same age at field day or school social events; witnessing the struggle with making a decision about something as simple as going on a walk to the park with me; Tucker not participating in sports because of the fear of failing.

As a parent, I want to fix these things.

I used to feel guilt when looking back for example when my son was so young and was forced to wear those Sunday clothes and shoes.

Tucker would fight and scream as hard as he could so as not to have to put those things on his body. I did not understand. This learning about Asperger’s has been a journey and will continue to be.

Tucker coming into my life has pushed me to be quite simply, better.

Tucker has taught me what the meaning of unconditional love is, I could never love anything more than I love him, no matter what.

I have to forgive myself for anything I think I did wrong because shame or sadness will do me no good as a mother.

I have to let go of guilt; that only holds me back and stuck in the past which serves no purpose.

I have had to learn to stand up for what I believe in and trust in what I know is right for my son I must be his advocate especially in school.

What I think is important for Tucker, is usually not what is important to him i.e. having lots of friends, being involved in sports, etc. Tucker will be Tucker.

I get much support from the people I now have in my life and that I value immensely.

I have realized now, that it is O.K. to let people help; they do it because they want to and I would do the same for them is asked.

Right now, anxiety and Asperger’s the issue.

There are “hurdles” that arise but the “hurdles” give way to new knowledge. No one child with Asperger’s is the same.

They are all their own special selves.

The goal for me is to equip Tucker with everything he needs in life to be happy, to graduate from college, to have a job, to support himself and to marry and have a family if that is what he wants.

Right now, he wants to go to college and learn to be comic strip writer!

Kathy

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Have you ever repeated a phrase you’ve heard all your life, but never really thought about what you were saying? Here are a couple of examples:

The same as two peas in a pod.

Cute as a bug.

Shiny as a new penny.

It’s raining cats and dogs.

I’ve said these phrases hundreds of times, but until my son, who happens to have Asperger’s Syndrome, questioned their meaning, I never really gave them any thought.

Matt was probably 3 or 4 when he heard the “two peas in a pod” reference. I was talking about my nieces who loved the same music and the same clothes and how they were as alike as two peas in a pod, when Matt pulled my hand, looked me straight in the eyes and told me, “no two peas, in or out of a pod, are exactly the same so using that as a reference doesn’t make sense.” After I closed my gaping mouth, I told him he was right and I have never used that phrase again.

He called me on the “cute as a bug” saying about the same time. His explanation was, “if bugs are so cute, why is everyone afraid of them?” Again, he was right and I removed that phrase from my vocabulary.

“Shiny as a new penny” I still use, but I had to show him the difference between a new penny and an older penny so he could compare the two.

As you can imagine, “raining cats and dogs” took us outside in the rain to make sure no puppies were falling from the sky. I still smile when I remember how serious he was about making sure no puppies were being bounced down from the sky.

I learned quickly those quirky little sayings weren’t going to make it in our conversations. When Matthew was diagnosed with “The Little Professor’s Syndrome” it made it easier to understand since he had been teaching me new things for years.

I have learned over the past 15 years to live in a world of absolutes. Silly sayings and general phrases are only used after their validity has been checked out. My vocabulary has continued to grow in order to keep up with my amazing son’s. He continues to amaze me with his thoughts and ideas, the way he sees the world.  I believe we could all learn from our children, we just need to listen to them, to hear what they really mean when they say something. I’m so very blessed to have my son. He keeps me growing and learning in this ever-changing world we share.

About me: My name is Barbara McCormack and I am a single mother, 57 years old, with one son. We live in a small town in the western part of Texas, named Andrews. Matthew is 15 and a freshman in High School.  He was diagnosed with AS in the fourth grade. I recently retired after working as an executive assistant for 31 years. We have two dogs, BeBe and Lucy.  Matthew and I are both avid readers and spend many hours a week with our heads stuck in a book.

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