What does childhood mean to your autistic child?

The scene plays out a million times. Parents, the developmental paediatrician, the child who is not hitting social milestones. The tears. I’ve been there.

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The advice. Meds. Therapies, Visits, Appointments.

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The googling. I won’t even go there, it’s self explanatory, it is just what you would do if someone said anything about your child.

But in this case, I had memories stir inside me.

And I related.

 And I took the road less traveled.

And you can call it “immersive home based play therapy”

or you can call it “a 70’s child”

 or you can call it NO I AM NOT GOING TO TAKE LITTLE PERSON AND MAKE THEM LOSE THEIR CHILDHOOD. (excuse the all caps)
 with doctor appointments that drain his energy,
 confuse him
 and make him meet a million young OT’s that are bored and doing boring things.
 In weird strip malls.
 And crowded chambers.
 With spreadsheets and stuff you can touch and stuff you can’t touch.

And what you learn is what it means to go to the doctor.

 Instead of opening your door
 And running outside

and playing with your friends

 as best you can
 in your own way.

So I told the doctors No thank you.

No thank you Autism Speaks.

 No Thank you Autism Awareness.Thank YOU Miss Jodi.
 No Thank you ABA, no thank you trip for more testing in Scottsdale.
 Meds? Growing child? In our case, no thank you. Am I on meds? Yes I am.
Do my kids know? Yes they do. Do I grow two inches every six months? No. Is it about dosage? yes.
 Do I know what is going on at your house? No.
 Am I an expert?
 Yes and No.
I’m an expert on my child and my life and I’m fat and I’m in my 40’s and I am all done with professional advice that is not grounded in reasonable result.
We do speech therapy, we let our school help. The classroom teacher is HUGE in our world.

And kids. And nature. And loads of play.

And guess what, thanks to my sisters, my moms, Papa, teachers, school, other kids, it’s working.

No thank you, you only get to be a kid once and this particular kid, the one I have, is not going to spend the bulk of his week at appointments.

And it was really hard and wore me out and you know what is right for you.

 Don’t forget, you know what is right for your child.
Follow your heart, look at what is going on and don’t be afraid to turn that fat autism pipe off and just let it drip a little bit into your house and remember,
 every child is still a child. And childhood is precious and rare.
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The 11 Best Pieces of Autism Parenting Advice

I googled for thousands of hours to uncover these gems, I hope they help you as much as they helped us! I wrote this article as a catchall to share with friends or friends of friends that are looking for our story of our success. I dare to call it success because at age 8, Brady is doing GREAT. He understands himself, he advocates for himself (sometimes), he is making friends and treating them like friends, instead of like interchangeable people that share a common interest. This is a very exciting year for us, because it is a validation of parenting off the map. There really isn’t a parenting map, but there is the illusion of the map. When Brady wasn’t keeping up with his peers, it was a scary time for us–and every horrible thing we read or heard sounded possible. It’s not scary anymore.

at the Phoenix Art Museum (free on Wednesdays)

at the Phoenix Art Museum (free on Wednesdays)

We began our autism journey when my son was a toddler and a teacher friend suggested he was autistic. I was distressed and in denial.  I was afraid of the word Autism and what it meant.

brothers

If you know one child with autism, you know one child with autism. Brady started talking at a normal age, he hit many of his developmental milestones.  He had an amazing memory. He had a large vocabulary. He loved ball drops, marble runs, rainbows, numbers, music, water and the phases of the moon. He had constant meltdowns, transition issues, sensory issues and was oblivious or overwhelmed by people. He did not play with other children and he used me as a buffer for almost every social experience.

I learned that there is more than one perspective. I chose to follow the perspective of autistic adults. They say “No about us, without us.”

Autism Awareness is a perspective aired by groups like Autism Speaks. These were the first voices I heard when I researched autism or sought services. They have a ton of information and material online, so this paper will focus on Autism Acceptance voices, wherein we have taken the most advice.

Autism Acceptance is the idea that Autism is a pervasive part of your person, it is the way you are wired. It can’t be turned off, medicated away and should not be regarded as an illness. You could say “different not less.”  Sometimes you might think “it is going away” or “s/he is growing out of it” this is not accurate. Autism is part of your identity.  Another word for this is Autism Positivity.

11 concepts Key Concepts for Parenting our child on the spectrum

Every child wants to feel Safe, Accepted and Competent. Bill Nason, Jennifer O’Toole of Asperkids and Mama Be Good are great blogs to help me keep that viewpoint at the forefront of my parenting.

  1. listening

 

2. Take advice from adults on the autism spectrum. Adults like Karla Fisher (Karla’s ASD page—invaluable, I follow her on Facebook), William Stillman (author of The Everything Asperger’s Book), John Elder Robison.

3. Read the  The Autism Discussion Page run by Bill Nason. He is compassionate and clear. I share his writing with my son’s teacher.

4. Learn the Token Management Theory. It is easier than it sounds. It does not require real tokens or charts. This helps us prevent meltdowns. This really should be number 1 as everything seemed to cascade from this.

from Karla's ASD page on Facebook...loads of great stuff in her albums. I save her images to my phone and Brady scrolls through them and reads her advice.

from Karla’s ASD page on Facebook…loads of great stuff in her albums. I save her images to my phone and Brady scrolls through them and reads her advice.

5. Introduce your child to Autistic Role Models. This was hard at first, we had to find people online or read children’s books. I told Brady he was autistic when he was 7 and in 2nd grade (this is when he asked about it). This is a good article about explaining autism to a child. “On Being a Hair Dryer Kid in a Toaster Brained World” by Mom Not Otherwise Specified.  We watched YouTube videos by Jacob Barnett (he’s a genius so we can’t totally relate but he’s charming and practices great self-acceptance, on autism he says “I just roll with it”)

6. We read stories about Joey Hudy and we practiced science experiments from Dr. Mad Science, a boy on the spectrum who loves science too. In 2nd Grade Brady led some science experiments in class acting like Dr. Brady and he decorated his bedroom to look like Jacob Barnett’s bedroom and wore a hoodie and a baseball cap backwards like Jacob for a while.

7. Remember that “All progress occurs through area of interest”. Brady had strong interests that I used to draw him out. This is also called “Affinity Theory” and Ron Suskind has an interesting book about how his son was able to make connection using his passion for Disney.

Life Animated by Ron Suskind

Life Animated by Ron Suskind

  1. Practice Bill Nason’s article “Stretching Comfort Zones” we have a long summer vacation on the East Coast staying at my mom’s house. I constantly challenge Brady’s comfort level. It helps that I’m a little disorganized and thus he’s never been able to count on me to be prompt and predictable the way he longs for me to be.  It also helps that Brady read the article and is on board with the plan. Now that he is older he reads things too.

rocks69980182_o9. Cognitive Therapy is recommended for kids on the spectrum. The kind we use is based on the work of Dr. Abraham A Low in his book, Mental Health Through Will Training.  These techniques are a foundation of our parenting both of our children. I added a list of “spots” to the end of this passage. You train yourself to recognize when you are losing your temper and practice a spot to get your temper under control. You can click on spots here too and cycle through them. Practicing self-leadership is our way of helping Brady become aware of his temper as a manageable symptom and his perspective as partial. This was key to helping him recognize the viewpoints of other people. Because Brady is skilled at practicing self-leadership he’s made great strides socially.

I will never forget the scary things people said to me about Aspergers when he was a toddler. The reality is much different. He's happy. He has friends. He loves school. Life is good. We worked hard to help him understand himself and others. I hope our journey helps you.

I will never forget the scary things people said to me about Aspergers when he was a toddler. The reality is much different. He’s happy. He has friends. He loves school. Life is good. We worked hard to help him understand himself and others. I hope our journey helps you.

10. Learn about how play develops; learn about instrument play v. relationship building play—I remember reading about his in a child development textbook. Learn about pragmatics and expressive language. If you understand the mechanics of play, social expression and these child development milestones that most kids acquire intuitively you will be able to articulate what you are trying to teach your child. If your child does not learn from watching other people (social blindness) then you have to find another way to make that connection. Brady had huge delays in these areas but I did not even know the words for it to understand why he could not do certain things. He had clear and beautiful speech, yet speech therapy is essential for him.

in the beginning, playdates were really hard, Impossible. So we just did other things. We spent lots of time at parks and museums. And you know, that was not a waste of time. It was just another way of hanging out with my little guys.

in the beginning, playdates were really hard, Impossible. So we just did other things. We spent lots of time at parks and museums. And you know, that was not a waste of time. It was just another way of hanging out with my little guys. Now we have lots of play dates, but it didn’t come easily until he was 7 or 8.

11. The idea of narrative psychology. Read: “This is Your Life And How We Tell it” We use this idea to build a positive story to help him grow confidence. This is not the same as a social story, it is a narrative. It helps me offset undermining remarks about autism. For example: ”Autistic Children don’t like PE.” No doubt this is true—but that attitude can turn the child off from activities altogether. An ongoing positive narrative within the home that supports the idea that he loves and excels at sports.  Sometimes I think of the famous Theodore Roosevelt quote about “the Man in the Arena” Autism has such a strong stigma about what you do/are/like/can be, that I need to fight that in the home. My son already is hampered by rigidity, anxiety, fear of novelty, transition and new people. Why add to it with dire predictions?

We played with lots of tracks, dominoes, ball drops and loved kinetic sculpture. He loved predictable, orderly toys and structured play. So that is where we started, with what he liked. And then we stretched and stretched. Now he likes so many things.

We played with lots of tracks, dominoes, ball drops. He loved kinetic sculpture. He loved predictable, orderly toys and structured play. So that is where we started, with what he liked. And then we stretched and stretched. Now he likes so many things.

It is not the critic who counts; not the man who points out how the strong man stumbles, or where the doer of deeds could have done them better. The credit belongs to the man who is actually in the arena, whose face is marred by dust and sweat and blood; who strives valiantly; who errs, who comes short again and again, because there is no effort without error and shortcoming; but who does actually strive to do the deeds; who knows great enthusiasms, the great devotions; who spends himself in a worthy cause; who at the best knows in the end the triumph of high achievement, and who at the worst, if he fails, at least fails while daring greatly, so that his place shall never be with those cold and timid souls who neither know victory nor defeat. –Theodore Roosevelt (THE MAN IN THE ARENA Excerpt from the speech “Citizenship In A Republic” delivered at the Sorbonne, in Paris, France on 23 April, 1910download PDF of complete speech )

What it was like for my in kindergartenby Brady K. My son wrote this post  with help when he was in 2nd grade. He attends a charter school and is mainstreamed. Today he has many friends and loves school.

my Listmania list of my favorite Autism Books (fiction/nonfiction/YA and adult).

best friends

best friends

Cognitive Therapy: The following is a list of Cognitive Therapy Prompts we use to manage fear and anger in our house—these are excerpted from Mental Health Through Will Training. We say this stuff like a broken record in our house, because nervous and angry temper ebbs and flows with the day. I realize it is a long and cumbersome list, but it was incredibly useful for us. I include this because many people I know asked me to forward the list when they hear me talking/explaining temper to my children. In a moment when he has temper or is worked up, these are pithy statements that I can use to move us passed an intractable moment. With practice it comes to the tip of the tongue and helps control temper. The easiest book to try the method out can be downloaded on your kindle for .99.

 

  • “I cannot” means “I care not”.
  • All I know is that I don’t know.
  • Angry temper is temper turned outward toward another.
  • Anticipation of an event is usually worse than the realization of that event.
  • Approval of others is a want, not a need.
  • Avoid self-importance. Others don’t sit around and think about what I did or said.
  • Be group minded.
  • Be self-led, not symptom-led.
  • Calm begets calm, temper begets temper.
  • Change your thoughts and impulses and your feeling and sensations will follow suit.
  • Choose peace over power. Don’t go for the “symbolic victory”! (See, I told you so.)
  • Choose to hope rather than “gloom, doom and despair.”
  • Comfort is a want, not a need.
  • Comparison temper is a form of fear temper. (comparing yourself to others)
  • Decide, plan and act.
  • Discomfort can be patiently borne, bravely faced and humbly tolerated. (we use this one all the time, “tolerate the discomfort”, we never say “it’s ok” we say “bear it”)
  • Don’t blame, complain or explain.
  • Don’t give outer expression to my inner environment when temper is involved.
  • Don’t let the trivialities of everyday life work me up.
  • Don’t take your own dear selves too seriously.
  • Drop the danger, diagnosing and judgment.
  • Drop the excessive need to control outer environment. (Outer environment is outside of us, inner environment is our feelings)
  • Drop the judgment on others and myself.
  • Drop the need to be exceptional.
  • Drop the use of temperamental lingo. (this means working yourself up and saying things like, I’m going to die, or it was the worst thing, etc.)
  • Drop the vanity of always knowing better and best.
  • ENDORSE for the effort, not the outcome.
  • Endorse like an ever flowing river…
  • Every measure of self-control brings a measure of self-respect.
  • Every day is full of frustration and disappointment. That’s average.
  • Everyone is entitled to their initial flare, (reaction).
  • Excuse yourself and others, don’t accuse.
  • Failure to practice spotting is Sabotage and so is failure to practice muscle control.
  • Fear is a belief and beliefs can be changed.
  • Fearful temper is temper turned inward, toward ourselves: self-disgust, embarrassment…
  • Feelings are NOT facts.
  • Feelings call for expression, temper for suppression.
  • Feelings rise and feelings fall.
  • Feelings should be expressed and temper suppressed.
  • Focus on what you Can do, Do have and Do know, not the opposite.
  • Get out of duality. A firm decision will steady you.
  • Go about my mental health with a strong aim, not a lose wish.
  • Have I endorsed today?
  • Have the courage to be wrong in the trivialities of everyday life.
  • Have the courage to make a mistake.
  • Have the will to “humility”.
  • Helplessness is not hopelessness. There is no hopeless case.
  • Humor is our best friend, temper our worst enemy.
  • I can act my way into right thinking. (Action produces motivation.)
  • I can always share my feelings with an understanding party, without using “temperamental lingo”.
  • I can bear discomfort and do hard things.
  • I can command my muscles to move.
  • I can control my speech muscles.
  • I can do the things I fear and hate to do.
  • I can do things in part acts, (baby steps) and then endorse for each act.
  • I can feel guilty without being guilty.
  • I can move my muscles as needed. Then endorse.
  • I cannot control outer environment, only my inner environment.
  • I don’t need to be a saint, hero or angel.
  • I have choices. (agency)
  • If you can’t change an event, change your attitude towards it.
  • Interpret securely, don’t exaggerate insecurely.
  • It’s okay to be average.
  • Lower your expectations and your performance will rise.
  • Mistakes are a healthy and valuable part of life.
  • Most symptoms are NOT dangerous, only distressing.
  • Nervous people have a passion for self-distrust.
  • NEVER INDICT, ONLY ENDORSE!
  • Objectivity terminates panic.
  • Our feelings and thoughts can lie to us.
  • Our self-worth does not depend on our performance.
  • Outer environment can be rude, crude and indifferent.
  • Peace from outer environment is temporary and isn’t really peace.
  • People do things that annoy us, not to annoy us.
  • Refuse to sacrifice inner peace for trivialities.
  • Reject bad thoughts!
  • Remember, peace over power.
  • Remove the danger from a situation.
  • Replace an insecure thought with a secure thought.
  • Resist impulses that are not good for your mental health.
  • Secure your racing thoughts.
  • Some things happen by chance and not by choice.
  • Spot and see if your “imagination is on fire.”
  • Stop, Drop (the danger) and Spot
  • Take a “ho-hum” attitude toward a distressing task or symptoms.
  • Take the total view of a situation, not just the partial view.
  • Temper blocks logic.
  • Temper is a luxury I can’t afford.
  • Temper is the intellectual blindness to the other side of the story.
  • There is no right or wrong in trivial matters.
  • Thoughts produce symptoms & thoughts let them go.
  • To be simple is to be great.
  • Treat your mental health like a business, not a game.
  • Trust in your own validity.
  • Unrealistic expectations bring disappointment.
  • We feel better in proportion to the amount of discomfort we are willing to bear.
  • We want to be exceptional, but fear we aren’t even average.
  • Wear the mask. (behave in a socially agreeable way)
  • When we express ourselves in temper we end up with self-disgust.

If you like to read or follow blogs, this is a list of Autism Positivity blogs representing many different voices (click CTRL+Click to follow the link or move your mouse over the link to see the URL in a tooltip). I copied and pasted the blogroll from this page, Life his Way):

  1. An interview with Karla, Dr. Arnold and me
  2. Our “less is more” IEP story
  3. It’s Not Hate: on advocacy
  4. Thinking Person’s Guide to Autism
  5. ThAutcast
  6. An autistified habitat!
  7. A hair-dryer kid in a toaster-brained world
  8. Mama Be Good
  9. Autism and Empathy
  10. The Third Glance: A peek into my (Autistic) mind
  11. Just Stimming…
  12. Tiny Grace Notes (AKA Ask an Autistic)
  13. Emma’s Hope Book
  14. Autistic Hoya
  15. Why “autistic person” and not “person with autism”?
  16. Another post on person-first vs. disability-first
  17. Wrong Planet
  18. On writing about autism science
  19. New Leaves Clinic: neurodiversity support in Beaverton, OR

 

Autism 101: Taking A Trip on the Polar Express

We took a family trip to this winter break. The trip was wrapped around a ride on the gorgeous Grand Canyon Railway’s Polar Express, in Williams, Arizona.

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This is our second time, the first was when the boys were very young. The adults in our family loved the magical train ride, the caroling and the visit with Santa. I wanted to go again when Max was old enough to enjoy it, but I also knew that for as much as Max would love it, it would have some elements that Brady would not like. Like most families we can’t please everyone all the time but I knew we could find a way to put together a winter break that would allow everyone to make good memories.

brady in the snow

For this post, I asked Brady to write his impressions about the trip in case an ASD kid is looking for an autistic perspective before a trip. I will leave out the details about the Polar Express as the experience is popular and well documented elsewhere. I couldn’t find much for family with an autistic family member, so I know Brady can contribute in this area. As a disclaimer, all autistic children are different and my child’s perspective is simply his. Brady is 7 1/2 and in 2nd grade. I ask him to help me write because, it helps him express himself. It validates him when people visit and comment and it develops him as an advocate, a trait he needs to live an independent life. Like some children with Asperger’s Brady has a great vocabulary, these are his words. I think when he is not stuck for words he has a talent for expressing himself. Thanks for coming on our journey with us.

sledding

Brady’s 5 Tips for an ASD person on the Polar Express

1. Bring headphones to wear. The trip is designed for neurotypical kids who love to yell all at the same time. This is very exciting for them. Most times when a big room of children are together everyone wants to yell or cheer. The headphones will help. I sat by the window and looked out the window and that helped too.

2. Bring a blanket, the trip is very long and you can hide under the blanket to get a break from the people. Some people wear pajamas. My brother wore pajamas. I did not have any that were warm enough and layering was not comfortable so I wore comfortable clothes instead. If you are comfortable you will have a better time.

3. The hardest part of the trip was 2 times. There is the “time tunnel.” This is a tunnel full of lights that acts as a magic portal to take you to the North Pole. When you go through the tunnel the first time, the lights are blue. Everyone screams very loudly. This is not fun. On the way back you know that it will happen again, and it does. The lights are red this time. Everyone will scream like crazy. There is no stopping them. This is why headphones will be helpful. I did not like the yelling at all. But then I found humor in it because it is funny how much some children love to yell at the same time. Sometimes you have to laugh at people they are so strange.

4. Your ASD kid will probably like the M compartment or maybe F to W because there is a front and back and the you don’t want to be front or  back because they blow the horn at railroad crossings. They have to do this because it is a train. It is not part of the show. If you are in a middle car it will not be so loud. (Mom note: I put this down as Brady said, but maybe when you buy tickets you can ask for a car a distance from the horn. We were in the first car. Not sure if it can be helped).

5. They say that Santa is going to give you a gift. If this concerns you, you can click this link and I will show you what it is (yours might be a different color than in the picture).  He will not talk to you for very long because he needs time for other kids. He goes down the train car in order so you can see when you will be next. He alternates sides, he does not go up one side and down the other, he stops in the middle and talks to a child on one side then a child on the other then he advances to the next row.

christmas tree

Mom Note: We built in a multi-day trip to Flagstaff around our Polar Express. We stayed at the Little America Hotel which has beautiful lighted grounds, we played in the snow and rode our sled (purchased for $20.00 at Basha’s–is a local business and always less crowded than Wal Mart) in the pine forest behind the hotel. We made a side trip to the Meteor Crater and we enjoyed some local restaurants like Brandy’s and the Galaxy Diner. It was a picture perfect family vacation. I think if you accommodate all family members, get good rest and regular meals everyone will have a great time. If you eat at Brandy’s (recommend) it is always busy, so Brady and I sat at the counter in the corner and had a peaceful meal and the rest of the family ate at big table. It worked out fine.

Talking about Neurodiversity, Neurotypical and Being Yourself

Autism 101 is a series to dispel misconceptions about Asperger’s and Autism in general. I write this post with the help of my 7 year old son, Brady. I could not express these opinions without his input or approval. This is a record of our experience. I am not an expert. I am just a parent telling my story. P.S. I am not left-handed.

I work in a school and I have an autistic child and a neurotypical child at home, so this is a word I come across from time to time and it’s a word we use at home to talk about Brady and Max.

People with autism (ASD) are neurodiverse and people without autism are neurotypical.

A good way to think about neurodiversity is to think about right handed v. left handed. Most people are right handed. Which hand you prefer does not make you a better person, but for a while, lefties had a hard time in grade school and it was considered a bad thing to be left handed. Lefties were forced to switch, but their brains always preferred the dominant hand.

Are You Left-Handed?

Now when someone is a lefty, they realize that along with that orientation comes a few gifts. Maybe they are better leaders? 2/3 of our former presidents in the last 30 years are lefties: Bill Clinton, George H.W. Bush, Ronald Reagan, and Gerald Fold were all left-handed presidents. Barack Obama and John McCain are both left-handed. Not so bad, huh?

When Brady asked me what it meant to have Asperger’s, I told him the best parts of it. “You are good at math, art, music, reading. You have a great memory. You are good at video games.” I told him he was a born scientist. He knows about his less appealing traits too. He has a hard time with change, crowds and surprises. Being out in the world is exhausting for him and if he doesn’t manage his energy he melts down.

Part of autism means he can’t process things unconsciously, the way most of us do. He processes things consciously, which makes life tiring when he is surrounded by new experiences. This is why it is considered a disability. That is why he does strange things sometimes. His mind is overloaded. If you were very, very tired you would act the same way. He just gets there quicker.

So this disability brings gifts as well, and since we get good advice from friends in the know, we get along okay. In Brady’s case, his likes and dislikes are sharply defined and have not changed much since he was born. That makes him pretty easy to understand. So, Brady thought that his way is better.

I’m better than you!

Now where does that leave my son Max? Max is smart, funny, friendly and active. He can run up to any kid anywhere and play with them–which in our house looks amazing. He is BRAVE. Brave is not the same as reckless, he does things he is afraid to do and does not cry. He notices everything going on around him. He’s observant and a natural leader. He is gentle with animals. He loves to build things and play with cars. However, like most 4 year olds, he can’t read, do multiplication and knows as much about outer space as you would expect.

Max is adorable and perfect.

And like most younger brothers, he wants to keep up with his big brother in all ways.

Brady: Our sun is a star…

Max: our moon is the sun.

Brady: no, Io is a moon, Callisto is a moon

Max: look at that small dog,

Brady: I can’t think of other moons but there are more

Max: water bottle is a moon —

Brady has a hard time playing with other kids, but can speak with authority about the natural world (but who cares? He’s 7). Max is a social genius who still doesn’t know his alphabet (but who cares? He’s 4) How to explain neurodiversity in a way that shows that each boy is doing just what they are supposed to do with the brains God gave them.

An Arizona sunset is beautful

A neurotypical person is like a sunset. Sunsets are common, you see one every day. Sunsets have long stripes of thin color but every night, the color changes and they look different. Sunsets are like a neurotypical child with many interests, superficial and varied. Surprises, crowds, recess, parties, group games, team sports, don’t get in the way of a neurotypical child’s desire to play and have fun. They can blow things off, shake things off, adapt and are usually up for anything as long as they ate right and slept right.

You don’t see a rainbow every day (except if you know where to look). Rainbows are always the same, following a rigid set of rules and they don’t go out of their comfort zone.  A neurodiverse child doesn’t fit in, they stand out. They have quirks. If you understand the quirk, the strangeness goes away and you are left with something that out of the ordinary that is beautiful and necessary.

Growing up is hard on a regular child. On a neurodiverse child in large group settings at schools or daycare, it can be pretty tough. It’s important to remember that once you are an adult, you can dictate your environment. Things like recess and an insistence on conformity fall away as you mature. Adults value independence, especially when it is coupled with courtesy. What I like to see in my students and in my children is Be Yourself.

 

Autism 101: The patient path to making friends

Autism 101 is a series to dispel misconceptions about Asperger’s and Autism in general. I write this post with the help of my 7 year old son, Brady. I could not express these opinions without his input or approval. This is a record of our experience. I am not an expert. I am just a parent telling my story.

“I know what Asperger’s is. It is a disease, you can die from it” — a young student at my school. This statement makes Brady laugh like crazy.

In 2007 I read, Kids with Asperger’s don’t make friends. Kids with Asperger’s aren’t interested in people. Expect your child to struggle socially because of a failure to read faces and a lack of empathy.

At 2 1/2 Brady was waiting for the birth of his younger brother Max. We collected the state quarters and put them on this map. We made one for his brother too.

We did the stuff parents do, went to doctors and therapists, googled, talked to relatives, worried. He was assessed by new people, in new places which brought out his worst. We were offered therapies that were expensive, stressful and questionable. We believed scary things. I cried. We were frightened by the idea if we didn’t do anything now we would cause permanent damage.

Age 4, we were told he needed Play Therapy and other forms of social coaching. After I heard what it was like, it sounded like he would hate it. I did not pursue it. Instead, we created Tuesday Club, our version of play therapy.  A once a week, outside playdate with my mom’s club friends. It was the critical first step in acquiring social skills.

  • We had a set time.
  • It was outside.
  • It was at our house.
  • He had a big wheel that he was confident riding.
  • We did not force him to interact or talk to anyone.
  • We had music, food and fun
  • It lasted a year

I’m glad I did not force him to attend play therapy. The happy boy I see now is a result that he made his developmental gains in secure settings. Again, I do not criticize another’s choice to pursue play therapy.  Autism is a spectrum. Only you know what works in your situation.

Back to Tuesday Club, at first it looked liked this: A bunch of kids playing in my cul de sac and Brady riding his big wheel on the outside and every now and then jumping in someone’s face and yelling. And sometimes crying. And the kids played with each other because that is what kids do if you put them outside with each other and toys, bubbles, dogs and popsicles. Brady did not really play with anyone in a way that I would call play at all.

Instead of attending a $65.00 an hour once a week play therapy, I started a Tuesday club. An open playdate in our cul de sac from 3 to 5. We did this for one year.

In my eyes, it was not working. I expected him to eventually start talking to kids. I expected him to learn names. I expected all kinds of things, ordinary things but I missed what was taking place.

I should have expected him to have fun (he did), anticipate the event with pleasure (he did), participate (he did) and enjoy being with a group of kids (he did).  The critical take away from this one year event was that he developed a positive self image. He matured securely.

I thought Tuesday Club was a lame attempt to solve the play therapy problem. Now I can see what we were

  • giving him security,
  • making a predictable event in a successful environment,
  • giving him space and surrounding him
  • with positive people allowed him to get there on his own.

I had NO IDEA he was making progress. It was very slow.

C was a pretty quiet kid who didn’t really talk to Brady. That might be why he liked him. Brady saw him all the time, he saw his house all the time but he didn’t play with him. When Brady talked about him, I affirmed he.  When C moved away, Brady still talked about him the same way. It did not make sense to me, but it was harmless. Now I think this was his way of moving into a brave, engaged direction.

The next social step  was  recognition of a potential playmate. Brady decided that C was his best friend. He talked about C daily. If we needed a friend, C was his example. In reality, he played with C a few times a year. We saw them coming and going, because they were neighbors. Brady considered those routine glimpses as “playing” without social demand.

In school he mentioned one other student- M, she was friendly and undemanding and greeted him every day. He liked her but did not do his part to keep up the friendship. To her credit, she stayed a constant social force for him in school. She was his first school friend and they are still friends now except he keeps up with her better. She overlooked the fact that he did not always answer or look at her. She was just nice. There are lots of kids like that, and they mean the world to the kids they come in contact with because they are easy and accepting.

Brady and E

Another stop closer, outside of school: E, a little girl who became a fun friend for him to visit–which was a big deal to us. She was two years younger so she was not socially overwhelming, she just loved him. She laughed at his jokes. Followed him around. I could tell that he liked her a lot because he smiled at her all the time. And because her parents are our good friends, he saw her quite a bit. He was getting used to people, she was easy to be with. The friendship was real.

Meanwhile, at school. I work in the library, after school he would go to the library, kids would drop in and he would engage with them. The library is a small setting. He felt in control there. I was nearby, he was surrounded by things he liked. The kids were sweet kids who just wanted to socialize. Because the environment was not overwhelming, he opened up. As the year passed instead of not responding to people, he started to engage. Then he got to to know the kids R, A, X, G, M, S, T. He still didn’t have play dates, recess friends, lunch friends but he was making progress.

Brady’s brother Max has done the most to connect with him. They are 2 1/2 years apart in age. They play and communicate constantly.

The patient path to friendship occurred in the spaces that felt good to him and because our life followed a predictable pattern, and within that pattern kids flowed through. As he matured, those kids meant more and more to him. He was becoming social on his own, without any direct involvement from me. I supported the environment and provided a positive narrative, but time and stability were the biggest influences here.

Towards the end of first grade he made a breakaway step, a best friend. A little boy, C, who liked him for him. They shared interests, they laughed together, they had successful playdates. It took time for me to believe it was true. I dropped him off with his friend and he spent the day. He had a great time. And that summer he transferred that skill in engaging and enjoying one person to new people. He now has a small group of boys that he plays with singly or in small groups. It looks like play to me and play to him.

He does loads of new things with his best friend, enjoys movies, bowling alleys and play dates without me. His friend gives him a willingness to try new things.

His best friend is someone he talks to and laughs with and takes turns and takes risks with. And it’s not all about his way or limited to his interest, yes there is some of that but there is also an ease and a delight in just being with his friend and spending time. And there is lots of empathy. And the fact that he has a great school community.There is no doubt my child has autism. And there is no truth to the idea that people with autism have no feelings, don’t like people and lack empathy.

We told him the truth all along. These are your friends. They want to play with you. You have so many friends. You are a great kid. So time passed, but that was the story.

This summer when we were home visiting family, Brady separated from me and ran off to play with cousins, the children of my friends all the time. I expected him to stay in the house or stay near me or play on the computer. Instead he was off playing war or laughing and talking or swimming. I saw that he was using all the skills he had acquired over the past few years. It happened without me realizing it.  While he was coming into his own, I was still reading about play, socializing, etc but I don’t think any of that reading did anything except help me break down the process so I could explain it in this blog post. I hope my story helps you. I don’t like to write personal things about my child on the internet, but there is so much misinformation on this topic out there, I hope our story helps someone.

Finally, he still does not like any large group setting. I don’t know if he ever will. I don’t think it matters as an adult.

What I Want You To Know: Having a child with Asperger’s Syndrome is a joy

I wrote this note because I am not comfortable talking about this topic– but I talk around it all the time. I go back and forth between thinking it is best to let my son “fly under the radar” or “label” him or just turn back the clock 30 years to when he would be ‘quirky’ and let it at that. I submitted this to “Rage Against the Minivan“. “What I Want You to Know ;is a series ;of reader submissions. It is an attempt to allow people to tell their personal stories, in the hopes of bringing greater compassion to the unique issues each of us face.” 

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What I want you to know: Having a child with Asperger’s Syndrome is a joy

We spend lots of time building tracks and towers.

I want you to know that sometimes I wish my other child had Asperger’s too. Even as a newborn, he had the same personality he has now. It is not easy to be a toddler that does not like change or transitions. The world is new.

I expected my son to enjoy preschool, play dates and birthday parties. I had friends that were pregnant when I was and we had play dates together. I thought that our children would be best friends.

My boys call their my mom “Butterfly” instead of Grandmother. She is a math whiz and a bridge champion. She is forever telling me my son is normal. I guess it’s all relative. (pun intended)

I learned the hard way that groups, surprises and new experiences meant meltdowns. Outings with friends were a disaster. He would cling to me, he would fall apart, and we would leave early. I watched other children playing together while my son would not get off my lap. I gave up on play dates. I did not have mom friends I could relate to. My son could tell you the 50 states in order (and their borders) when he was 2, but he hated birthday parties. For a time it was lonely for us. I think every parent comes to that place where you have to let go of your expectation of what you child is going to be like, in my case, autism led me there.

We spent a lot of time at museums and parks. I learned what made my son feel comfortable. I sat up at night and googled autism. I did not know if he had “it” or not. I did not know anything. It took a long time for me to understand that rigidity was not something that he could help. I lost my temper about things were because of his Asperger’s. I feel guilty about that; again, I’m not sure if it was avoidable.

I’ve learned to be patient with my son. I learned to see things from his point of view. This year when he was six, we had a play date where he left my side and played with his friend.

My son floated on a cloud of happiness about his new friend.

I want you to know that my child can make friends. My child makes connections with gregarious kids, the ones that love to play and let it go that my son is awkward. I love these kids because he blossoms when he is with them. I get to see a side of my son that is otherwise not possible. If you have a friendly little boy or girl that disregards the fact that sometimes my son won’t answer or look ;you in the eye, but finds a way to play with him anyhow you would know that a child with Asperger’s has feelings. He has as many feelings as you do, it is just that his feelings are in a maze and they have to wend their way through his anxieties and his need for order to get out. Sometimes he is so concerned about order and rules that he can’t make space for being a child.

Always making something beautiful

When people communicate online, feelings are easily hurt because text lacks nuance and inflection. My son has that same challenge face to face. He can’t read your body language or tone of voice, or if he can he does it so poorly that you are left feeling misunderstood. For the first six years of his life, while kids were soaking up expression, inflection and mingling with each other my son was oblivious. It’s obvious that groups of people overwhelm him, he chooses to stay silent or else if confronted he is awkward at best. He said that when people talk to him at school he “doesn’t expect that” or he feels “stunned”. The more people he is with, the more lost he gets. I understand how offense is taken. As I watched him change into a silent boy I knew we needed to get him tested. I am glad we did. The diagnosis of Asperger’s has connected me with real help.

What does that mean for him in grade school? Over the course of a school day, numerous unanticipated contacts build up and create stress. Now my son works on “managing his ball of energy” so that that stress comes out in swimming or swinging at the park instead of shouting and shoving. In small groups with time to react, it is much easier. He’s just like other kids in that regard, when he feels overwhelmed, he acts out. His teachers have insight, he has speech therapy to help him with open-ended communication and an IEP that sets him up for success in the classroom. I am incredibly grateful for these services. The school recognizes his challenges and specs out the work he has to do to be successful. He is held to a high standard.

I want you to know that autism is not a tragedy. We need people that see things differently.

Sunset with Saguaro Silhouettes kindergarten art project

My is a warm and friendly person. Yes it is more work to communicate with him–he is not a socially conforming person. As a school librarian I see all the kids developing on their own pace. Some are conforming, they form power blocs and band together watching each other for steps outside of expected behavior. Like “pink is for girls.” Other kids are sensitive and caught up in their own feelings. They like to play alone or with a few friends. They are sensitive to nature or fascinated by art. Some kids are logical. Some kids are attention seeking. Some so active they can’t settle. Most kids are a combination of it all, depending on the day. Autism is just one more way of looking at the world. My child plays best with kids that don’t expect him to follow a script and in small groups. The kids that are very verbal and looking for social conformity find my child frustrating. That’s okay. Those kids are socially adept. They daunt more than just the autistic kids. I want you to know that kids have many dimensions and they are all telling you the truth about themselves. Once I relented on what I expected my son to be and got to know who he was actually things are so much better.

I don’t like it when people say that someone with Asperger’s doesn’t have feelings, doesn’t need friends, is a super genius. I understand why you think that, but it isn’t true. He is not a robot. He feels things so intensely that he is overwhelmed. He can understand how you feel too. He’s been raised with as much respect and care as your child. But we fight a different battle than you do. His homework is social exchange and his playtime is math worksheets. Every year it gets easier as I work with him to support him instead of trying to change him.

I wanted to excuse my son from P.E. I “knew” it would be a nightmare. I held my tongue and gave my son’s growing maturity and his teacher a chance. It turns out his P.E. teacher is scheduled oriented, has high expectations and is a clear communicator. My son loves dodge ball and loves P.E. Lesson learned. Public school has been good for my son. I had the same fear about team sports. My son uses his ability to focus to make him a pleasure to coach. I watch him doing drills in the backyard and I think, look at you, loving sports. Maybe it is because he has been lucky with coaches that are very clear and fair when they speak. I learned that when he understands and feels confident, he moves mountains. After 1st grade, I learned not to pigeon hole him.

Both boys are overjoyed to reunite with their dad. We had been on the East Coast for two weeks before he joined us. This picture was taken at the airport.

Autism uses the symbol of the rainbow jigsaw in its awareness campaign. Before I knew my son was autistic, I knew he loved rainbows because they followed an order. I learned how important order and rules are to my son to help prevent surprises. I see the world in a new way because of my son. We talk about ocean currents, recycling and crop irrigation. We talk about Jesus. I think he is going to change the world, because if anyone is going to decode the language of dolphins or see a glimpse into the mystery of the weather it is my son with his love of patterns.

My friend Mandy made him a gorgeous cake for his 5th birthday.

Sometimes I think that Asperger’s should not be called a “disorder” because it is the insistence on order that makes my son who he is. I want you to know that Asperger’s is cool and sometimes, I think my son is on to something with the way he is oriented. If my son is in your child’s class, I want other kids to enjoy his unique gifts and reach out to him. They will find a loyal friend with a pure heart.