What does childhood mean to your autistic child?

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

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The advice. Medications. Therapies, Visits, Appointments. One breeding another like Mickey in the Sorcerer’s Apprentice, ceaseless brooms and buckets. They want to help but they exist in a clinical setting and who plays in an exam room or a designated therapeutic space? By definition play is organic, unbounded and engaging. fred rogers quoteDirected play with a counselor moving towards a play objective is not play. It is an intervention. I don’t care how the room is dressed up with balls, color and swings.

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I had memories stir inside me, I related.  I rejected my fear about the word autism and reached back into my past for tools that I could use to socially advance my child without making him feel less than.

If you require therapeutic language, call it “immersive home based play therapy”, in my words “a 70’s childhood.” Every parent draws from personal experience–and mine was the backyards of my neighbors at kellysneighborhood and staying outside in all weather. My successful experiences relied on the outdoors, a pet, cousins, siblings, sensory engagement.

Sensory wonder like the clattering of a train on a long Amtrak trip to Florida, pressing my face against a cold window. Splashing in water or the smell of a barn. I didn’t have a barn. I only rode a train twice. I had significant social delays, these delays existed as an acknowledgment by the adults in my life but they didn’t talk about it to me and they didn’t treat it directly with a doctor. My parents despaired of it and lived with it.  mom and i - CopyThe only thing they could do in the 70’s was hope I grew out of it. This was not an amazing attitude and “growing out of it” took place to a degree but what really helped me was seeing my own child and giving words to what challenged him and what strengthened him. Because he was the same as I was. We were both on the spectrum. I made more social strides parenting him than I ever did before I knew what neurodiversity was.

Every trait has a flip side to it. If a child has a strong negative behavior, flip it around and look for the strength. My social weakness enabled a hunger for sensory play. I

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after the monsoon

soaked up smells and sounds. The pleasure that sensory play gave me was the foundation for my ease and slow progress. Richard Louv writes about “fascination” a suspended moment of sense engagement. If you ever laid in the damp grass on a sunny day and looked at the world from grass level, felt it tickling you, that’s fascirainnation. Watch ants wending along a sidewalk towards a crumb or rolled over, shielding your eyes and following the flight of a bird, that is fascination. It has no real point and involves losing track of time and just being.

Fascination is fabulous. Kids are naturals at giving into fascination.  Most adult put a stop to it, insisting on staying out of the dirt, getting up, get going, stop it. circle spinning thing - CopyThese same adults will wrap back around and try to find that gift again. Maybe they forest bathe. Maybe they will Instagram a flower or a view. It is work to shut your adult brain off and just be. It’s even more work if you weren’t allowed a chance to do it in the first place. Kids can do it, but the social world demands that you direct your energy towards a goal. And that’s my problem with directed interventions and play therapy. It’s so dry. It kind of sucks.sprinklers

The kids that hang onto fascination the longest are the country kids. The farm kids. Think of an adult that grew up playing outside. Did that person ever say “I wish I had spent more times indoors doing activities. My time outside was a waste?” I am talking to  you if you are a parent that has a reoccurring appointment with a developmental therapist. I gave that world a hard pass. I walked into those spaces every few years and I always thought “This place is a bummer” I’m not giving my son over to this scene and dragging him out of the house to hang out with these well meaning, educated neurotypical people with their milestones and objectives.

balloon - CopyI didn’t have a farm, I was advantaged at tapping into the sensory world but my parents and teachers didn’t have language to value that. It didn’t mean anything actionable. The payoff was years down the road or simply something that gave me energy to make it through the day. The way I got the energy was invisible to everyone, even me. I didn’t know that walking the block delivering newspapers alone or riding my bike was filling me up. I just know I liked the smell of the newspaper, the sound of the wind when I pedaled. The sensory world has value and delight. It wasn’t a disaster to fail to fit in–it was just a part of my life. My life included social fails and sense triumphs.kerry and horse - Copy

Most times I did not meet the standard of average behavior with people. I had meltdowns and was contrary. I didn’t have a solid group of friends. For the bulk of my life, my friends were short term. Once a person got to know me, the relationship faded away or I was immediately rejected. That’s kind of how it is if you are on the spectrum and out in the world. Even with this, I played. I was allowed to play, it wasn’t taken from me and replaced with confined society and directed activities.

At the base of everything I write, I insist every child deserves to feel safe, accepted

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this cloud looks like a bunny

and competent. I took my block of development and turned it around. What worked for me, what got me to where I am today, with a family, with friends, with a job I like and society that suits me personally and doesn’t fall outside of a social norm. I have an independent life and when I write about being on the spectrum that isn’t a label I walk around with the way my son was labeled in grade school and walked around with it every day. Having these insights compressed our timeline for development. We made big strides and we did it by throwing in challenging experiences only after loads of sensory inputs. He drank from the well of play and took on things that defeated him on a play less day.

Filling our “schedule” with playful days meant saying no to doctor appointments and therapies that hog the autistic child’s calendar. Doctors can act as an ally but at the end of the day a doctor will only give you a few minutes and then typically 

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tasting honeysuckle

recommend more doctors, interventions and in some cases medication. Meeting the doctor was always time spent doing things that stressed my son out. Traveling for an unappetizing appointment, waiting, an unappealing exam room and for a brief conversation with someone that did not know my child in any setting outside of that office. The value of a doctor is that they see a range of children like mine. This viewpoint did not offset the agitation and stress of setting aside a block time for this interaction. 

If autism is outside your sphere of experience it is natural to look for an authoritative voice. For the first time in my life, I am grateful for my struggles, my humiliations, my failed relationships, job loss and late developing cultured behaviors.
brady at camp - CopyWe relied on his school for the experienced voice about what they were seeing and what we could do to get us to a place where our son felt safe, accepted and competent outside the home.
Our mantra was “you have to live in this world” and our hope was that he would grow up as an independent adult with a life that fulfilled him.
The inclination to treat autism like an illness is confusing and counter to the idea of developing a sense that you are an average human being with average feelings.
neighborsThe word “average” is undervalued and stigmatized to a degree. When I used the word “average” to describe my child, peers and family members would cringe and interject, ‘he’s not average’ Let me be clear, it is not an advantage to be treated as exceptional. Exceptionality breeds temper and a sense of entitlement. In our family, exceptionality is not a pathway to fulfillment because to get it, it requires social accommodation. Reliable social accommodation is found in small circles. Your  little corner of the world. Stray outside that boundary and people are insufferable to someone that lacks the ability to adapt, strategize. Society demands that you cope with discomfort, change, indifference.

grandmas pool - CopyChildhood is precious, a rare time and all too fleeting. Childhood is your chance to fill your little person’s tank with joy, fascination, sensory play and the tools to socially advance. Play is everything. Fight against the forces that take your child away from being a child and doing what children do best, in the place they do it best in.

If you “Lit it up blue” in March

If you “Lit it up blue” in March or have a puzzle piece magnet on your car. If you have a friend or a loved one with an autistic child, start reading about autism acceptance.

It’s awareness taken a step further. In 20 years, folks will understand autism better. But  I’m worried about the kids that are affected by too much “awareness” and not enough “acceptance”, my son, his friends, children that struggle socially but love the sensory world.

I’m not discounting the struggle. I’m not trying to make my child sound like a saint, I am trying to reclaim his childhood as his right and recognize that he’s a little person coming along and learning about the world. His way of learning about the world is very different from the way most children see things but that does not mean he is broken or sick.

We all have a value.

We are all fearfully and wonderfully made.

These are the gems:

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Photo by Melanie Rieders

Autism as a facet of experience, not a limit –Harvard, March 2014

Writer Joel Rubinoff and his five-year-old son, Max.

David Bebee / Waterloo Region Record

Autism Advocates should promote acceptance, not fear

William Stillman

photo by Tim McGowan

Autism, A New Cultural Competency by William Stillman, Huffington Post

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: 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.

Autism Positivity Flash Blog

This Autism Positivity Flash Blog Event is the brainchild of Thinking About Perspectives, a group of bloggers committed to increasing autism awareness and acceptance via open and respectful dialogue.  We are (and more):  30 Days of AutismOutrunning the StormThe Third GlanceAspie KidFlappiness Is,Quirky and LaughingLife on the SpectrumFairy Tale ForgottenThe Aspie Side of Life, and Inner Aspie.

Dear “I Wish I Did Not Have Asperger’s”,

I don’t know who you are or what your story is. I heard that you went online looking for help and did not leave your name. I want you to know Asperger’s is not the End of the World.

On May 21, 2011 we prepped for the "End of Days"

My oldest boy has Asperger’s. Why was he born this way?

Mr. Dreamy is a software architect. Here he is smiling because he is not the one who is 9 months pregnant.

All signs indicated my newest addition would be a non-conformist.

My baby sister is an engineer. This photo was not taken at Christmas.

After all, I know something about not fitting in myself.

Sometimes I don't pick up on social cues.

Sometimes my son is too literal

Watering him will not make him grow faster.

And sometimes certain things are obvious

Brady knew that was just a man in a rabbit suit. His brother did not have the same clarity.

We all have things about ourselves we want to change.

People often tell me I am "unique" . I know that means "could you try to be normal?". Yes. I try. But I always end up being me.

I believe that every perceived bad thing, is tied to something beautiful. I live in the dusty desert. Without the dust, we would not have such beautiful sunsets.

My son painted this picture of the Phoenix sunsets when he was in kindergarten.

I hope you can find the beauty in the way you were made. You are important and special and irreplaceable. Don’t change, find out what you are here to do. And do it.

Your friend,
Kerry Kenney

This post is in support of the Autism Positivity Flash Blog event.