Telling the Whole Story

Princess Kate is one of my heroes.  She is incredibly beautiful, always smiling, intelligent.  She married a Prince and became a Princess.  She is a mom.  She lives publicly, always watched by millions of people, and does not seem to mind.  She appeared publicly in high heels hours after delivering her second baby.

And she is speaking loudly and publicly about supporting our children and their mental health issues.

I could not be more impressed.

She has said that she wants to remove the taboo around talking about mental health issues.  She and William and Harry have been working together, have founded their own charity, Heads Together, with the focus of changing the conversation, getting people talking.

She even said, to the media, that she and Prince William “wouldn’t hesitate” if their children needed help with their mental health.

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William and Kate with their family, smiling and looking radiant, from wikipedia

 

Right now, I know several mamas who are in the process of trying to figure out assessments for their children.  They are not sure if their children are autistic, have ADHD, have ODD, are bipolar, or none of the above.  They are heroes as well.  Because while they are searching for answers and pushing against teachers, doctors, and therapists for more information, they are also being watched and scrutinized by the greater parenting community.

There is still a feeling that if there is something “wrong” with the child, there must be something wrong with the parenting.  There is a feeling that this generation of parents just isn’t in control of their kids.  There is a feeling that diagnoses are excuses to medicate and avoid parenting.  It comes from our parents’ generation, and the way that we have been raised, and the intensity of parenting while trying to maintain likes on Instagram and Facebook.  How can I admit that my child is struggling while still smiling and sharing pictures of the paintings we did this weekend?  How can I admit that I am seeking answers to my questions about what makes my child different if the constant message from the online world is that “God designed me to mother these children, and I can handle it”?

I want to be a strong woman, and to support strong women.  There is a meme that reads: “Here’s to strong women.  May we know them.  May we be them.  May we raise them.”  It moves my soul and makes me want to live as a strong woman.  There are supports out there that say things like, “Don’t mind the mess, my children are making memories.”  These are positive messages that encourage moms to breathe and appreciate their kids, but then it is even harder to admit, I live in filth, I struggle to smile.  Strength right now is putting on a show so my kids are distracted while I go hide in my room and cry about how I feel like I am a failure.

In the midst of all these parenting pressures, there is a deep culture of shame.  A definition of shame is that shame is the intensely painful feeling that we are unworthy of love and belonging.  (B. Brown).  We all feel that we are not good enough.  Not doing a good enough job.  Not making enough money.  Not being fun enough.  Not praying enough.  Not worthy.  While the Bible does say, “For all have sinned and fall short of the glory of God,” the entire rest of Jesus’s story is spent exclaiming just how incredibly valuable we are to him.  To Jesus, we are worthy.  In Jesus, we are worthy.  We are more than worthy, we are priceless.

“Shame needs three things to grow in our lives, secrecy, silence, and judgement.”  (B. Brown).  Shame is the pain we feel when we look around us and feel the burden of comparison and judgement coming from every single direction.  Intended or not, we can feel judgement from even our closest friends, even our partners and spouses.  Especially when it comes to raising our children or getting to the heart of their special needs.  However, it is not from God, and the pain it brings is enough of a reason to try to crack and break the silence.

When we share our stories honestly, we develop community, empathy, and resilience to shame.  When we talk about how things have changed with a heart that wants to understand across generations and differences, we can connect and understand each other.

I want to talk about how hard it was for me to seek an autism diagnosis for my son.  My son is amazing, intelligent, and even well-behaved much of the time.  He speaks clearly and is doing well in school.  And, he is autistic.

I want to talk about how hard it was for me to breastfeed my children.  I want to talk about how God loved me through my post-partum depression, didn’t leave me, but didn’t free me from it either.  I want to talk about how inadequate I feel as a mother, as a wife, and as a partner.

But I want to do it without whining.  Without pouting.  Without judgement.  Without judging myself.  Without making it sound worse than it is.  Without making it into a sob story.  It’s not a sob story.  On their own, none of those things I want to talk about is even a story.  It’s just part of my story.  And my story is long, convoluted, and far from over.

I guess I feel like the best stories have real hardship, but also have real courage, and I can see how choices made reflect the values of the teller.  I know that my story has all of those things in it too.  I just struggle to be real and tell it.  This is why I am so incredibly amazed and impressed by Her Royal Highness, and the changes I can start to see filtering down.  She is trying to be real.  She is trying to embrace her own struggles and talk about how real people are really working through their stories.

She inspires me.

Summertime stimming and conversations with parents

Summertime in our house is so loud. It’s unbearably loud at times. I understand the need to stim, the happiness, the joy, the excitement. I understand that it is self-regulation and that it helps things. I know that it is important and that the problem with stimming is all in its perception. However, this house is loud.

This summer, Penny and Aiden are louder than Jake. This is partially due to Jake finally understanding and appreciating quiet and time alone. He has taken to playing upstairs in his room with his Lego without anyone else present. This is a major development. As he has now learned to read, he is also happy to sit and read his favorite books endlessly. So much quieter than last year.

But Aiden. Aiden is a yeller. A hollerer, and a stimmer. I still don’t know how much of what he does is learned behaviour and what is his own little personality. When he is mad he is instantly in tears and yelling at the top of his voice. When he is happy he hums. A loud, monotone hum that has no music to it, it is simply a loud hmmmmmm sound. It’s a happy sound, and it always makes me smile because I know how happy he is. We first heard it when he was super small and eating. He would hum that same sound, the exact same tone, while he happily ate. It was adorable.

Penny is learning some words. She can say Mom, Dad, Aiden, Kitty, more, hi, yes, and no. She also manages to vocalize her demands and objections quite clearly without words. She loves to pretend play, much more than either of the boys ever did, and she is super interested in playing dress-up. She is quite social, and super observant. She knows how to unload the dishwasher and clean the toys up. The boys are still learning those things. She knows how to put away laundry and work the iPad as well as anyone. She is obsessed with buckles, and needs them done up all the time. She seems to love doing them up as well as simply knowing that they are done up. She can’t leave a buckle unbuckled.  Currently, she enjoys walking around on her tippy toes and doing whatever her brothers are doing.

So I wonder, where on the spectrum might Aiden fall? Penny? Are they even on it? I don’t want them to face those struggles. And yet, I am not afraid of autism, it doesn’t hold the same intensity or fear over me that it once did. Rather, I wonder about them so that I might know them better, that I might support them better, and love them better. I wonder, because I know all the signs and live with an autism filter on my eyes 100% of the time.

Stuffed animals seated around the room, ‘watching’ their own personal ‘screens’

I recently heard a story a friend of mine tell, for a completely unrelated reason, about a little boy I’ve never met who gets so happy and excited that he bounces and waves his arms behind him. He’s very well-spoken; in fact, he’s almost like a little professor. Based on my experiences, I suggested that she mention to his mom that maybe he should see a pediatrician to be screened for ASD. My friend laughed, saying, there is no way she would want to be the one to suggest that to his mother.

I get that. I really do.

It’s a scary thing to say.

It’s a scary thing to hear.

But I’m now at a point where I am really asking myself, why? And how can I change that?

I asked Aiden’s preschool teacher four times over the past school year if she had any concerns about him. I asked specifics, did he socialize well? Listen to instructions? Make eye contact? I wanted to know. I will ask his kindergarten teacher the same questions. I am not worried about him. I am not concerned that he will turn out autistic. I just want to know what he struggles with so that I can support his teachers, work with him, protect his self-esteem, and help him build relationships. Exactly the same way I feel about Jake.

Penny will be two this September. If she all of a sudden develops regressive autism, I will be surprised. I would be sad, if I didn’t hear her call me Mom again. But it would not change my love, my hope, and my passion for her at all. I would, however, change the way I approach her struggles and her needs.

I want to be able to encourage parents that screening, that investigating, and that understanding their kids is a good thing. It’s doesn’t have to make you feel like a bad parent; it can actually help you to be a better one.

I think the fear comes partially with the feeling that someone else has to tell you. I wish that we could take that part away. The fear, and the feelings of judgement, inadequacy, and defensiveness. Autism Awareness campaigns just haven’t helped with that yet though. More than awareness, we need education, understanding, and acceptance, to the point where moms can talk about it in loving, kind, and accepting tones. And not just with other moms of children with disabilities.

In my house, we do stimming. We are loud. We hum, loudly, and we buckle things up. We love our visual schedule. All of us. I don’t know where we fall compared to other families. I do, however, wish we could encourage and talk with them.

On Therapy and Shame

We are looking for a new behaviour interventionist.  I think I may have found one.  I am hopeful.

We are taking a break from ABA therapy.

I am incredibly thankful for the interventionists who have come and worked with Jake and our family over the past two years.  They have been professional and kind, respectful and wise, and have taught Jake and me so much.  Now we are ready to move on.

I want Jake to learn more in-moment strategies and skills.  I want to avoid tiring him out further and adding to his stress.  I want to see him actually apply some better behaviour skills, rather that learning them, practicing them, and then forgetting or refusing to use them.  My plan is to have someone come and work with us twice a week for a while, once during the day for a few hours and once during the evening.  I want them to integrate and join with us in whatever we are doing that day, and help us negotiate the trouble spots.  I want them to slow us down, so that we have an outsider voice breaking the tension.  I want them to work with Aiden, my husband, and me as much as with Jake, so that we are all learning together how to function better as a family.

I am hopeful.

Really, I want to better support Jake when he is struggling.  I want to slow down my reactions so that I can think clearly and see what is triggering him.  I want to be able to think about autism and what I know about how he works instead of getting frustrated about the behavior and never dealing with the root of the issue.

I want to model for Aiden how to be a friend to Jake.  I want to model for Jake how to relate to his brother and parents.

I read this amazing blog recently.  AMAZING.  I took so much out of it.  She writes about everything I feel and articulates situations I completely relate to.  Her big point, however, is that our medical culture and history treats mental health as something to be cured.  This is not always in the patient’s best interest, as truly, many mental health conditions can never be cured.  Rather, we focus on therapy as a way to deal with, cover up, and mask the underlying condition.

I think that therapy can be incredibly helpful.

We will most likely do more therapy in the future.

However, I believe that therapy has to be done very, very carefully.  The goal of any intervention needs to be helping the person learn a skill that will make their quality of life better without demeaning or attacking their self-esteem or self-value.  Learning ways to communicate is so important.  Forcing children to repeat words that don’t empower them and leave them still unable to explain their intelligence does not help.

The adult autistic community has written much on this subject.  They have totally convinced me that one does not need to be verbal to be intelligent and one can be disabled and still be incredibly valuable in society.  However, when I encounter real life scenarios with other parents at a playground, for example, stigma, judgment, and ableism are prevalent in my town.

Just the thought of talking about autism with other parents is scary.  How do you say, my child is on the autism spectrum, I can see similarities in your child, can we talk about that?  I can’t.  I just can’t.  I can’t even say, I know that there are so many kids these days, with everything from autism to ADHD and everything in between.  What makes your kid special?

What I have learned about autism makes me want to change my community.  We are a lovely community.  Small, but not too small; Christian, but not overly religious; helpful but not too nosy.  And yet, we struggle to change.  I would like to see parents who step up to each other and encourage each other even when they don’t know each other.  I would like to see parents who can say, my child is autistic, it’s nice to see him playing with yours.  Instead of, why don’t you teach that kid some manners?

We need to change the way we look at each other on Facebook.  I know from experience, I have been in tears, and not known how to get help, and posted a status update that says something inane like, “so tired of cleaning, why do they make so much mess when they play.”  If I had actually been on the phone with someone, I would have been crying, explaining what went down that day, how my heart aches and I doubt my parenting, how I love my kids but feel like I’m failing.  We would have cried together, then shared a story, made plans to have coffee or wine sometime soon, and ended the phone call laughing and being made a little stronger.  Brene Brown talks about this idea in her book, The Gifts of Imperfection, when she describes how being vulnerable creates real relationships and conquers shame.

I would like to see dads who listen to moms when they say, “I think there is something going on with our child and I want to have them assessed by a pediatrician.”  I would like to see moms who say, “I can see you are grocery shopping with a child who struggles in busy stores, I get that and you are rocking this.”  I would love it if I could see friends be honest with each other and say, “I can see that your child is showing some autistic traits, you need to talk to someone about it and have your child assessed.  It does not mean you have done anything wrong, there is nothing wrong with getting support, and I will be here to go through it with you.”

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Line up of stuffed animals and toys on a couch. They are happy toys, ready for the day’s events.

I am trying to work all of these ideas together into some sort of presentation I can give to parents of autistic children or even parents in general in my hometown.  I don’t know how to go about it.  Ideas are welcome.  I want to help parents move past shame and fear, get the point that disability and differences aren’t things that change the value of our children.  Parents need to have that point so that we can teach it to our children.  I want Jake to know that being autistic is nothing bad, it’s part of his character, his struggle, that makes him who he is.  I want him to be able to ask for support and be himself without being ashamed or judged.

 

On Teaching and Encouraging Acceptance, Not Judgment

Parents of disabled children have to make a lot of choices.  Choices like whether to take your kids out to the playground or to a Strong Start class, or whether to attempt preschool with your child who is atypical, are serious, heavy questions that require much consideration.  It’s a scary thing, to be that parent, to be watching your child like a hawk, to see if they are going to bolt, racing across the grass, straight towards the road, eyes on some speck in the sky or a truck in a parking lot down the road.  To watch them, waiting for that moment when they shove another child who didn’t realize they were in the way of an inexplicable game that is known only to one, or for those tears to fall when that nice orderly lineup of pebbles is upset when some toddler meanders through it.  You watch, to see if your child notices others, if they want to join in a game, if they need space, quiet, shade, a safe refuge, if they are becoming ashamed or nervous, or if they are courageous and actually enjoying themselves.

And on top of that, you wonder about the other parents.  What will they think when my son runs away screaming.  Will they think I can’t control him?  I can’t.  Will they even realize I’m his parent?  What will they say when he pushes their princess off the play structure?  Clearly, that’s not okay, but what do they think?  What should I say when my friends, kindly, say, gee, he sure does keep you busy.  Or worse, when a strange dad snaps at me: “Teach him some manners!”

These things have all happened to me with Jake.  Every one of them.

But not today.  Today I took all three of my kids to the playground.  They had a great time.  Jake went down the slide three times with Penny, holding her hand, side-by-side.  They both loved it.  He climbed the structure and watched out for everyone else.  He always knew exactly where Penny and Aiden were.  He watched some older kids come and start a game of grounders.  I could see that he really wanted to join in, but he didn’t say anything to them.  After a while of playing around them, he moved on and played with his almost two-year-old sister.  It was a great day.

I watched.  The same as always.

I saw another little boy come up to the playground with his dad.  He was wearing a teddy bear back-pack/leash that I would totally have judged as terrible before I had children.  He seemed to like it.  Once they got up to the playground his dad unhooked the leash and off he went.  On tiptoe.  Through the gravel.  Then once he reached the shade, he just sat down and started playing with the pebbles.  None of the other kids gave him a second glance.  No one came over and said hi.  No one was at all bothered by him.

I smiled at his dad.

My son is almost seven.  This little boy looked to be about three.  I wanted to go say something.  Like, hi.  Looks like you are doing awesome.  I’m so glad you brought your son to the playground.  Would you like me to introduce him to Aiden and Jake?

I could not figure out what to say without sounding or feeling totally awkward.  But I have been thinking about it all day since.

The internet is really wonderful.  Without it I would feel quite isolated, I think, in the autism world.  I have read extensively online and found it incredibly valuable.  However, the lightning fast spread of ideas has also been hurtful.  Recently there have been terrible tragedies where young children have died or been injured in incredibly unusual circumstances, and the reaction online has been so harsh, judgmental, and hateful.  There have been neighbours who have called in authorities when children are playing in their own backyard.  People are so quick to turn on each other, to call out the faults in each other’s parenting.  It has led to a culture of fear in parenting.  It has led to second-guessing and doubting my instincts.

I don’t even know how to say hi to a stranger in a park.

We have this ideal of what parenting should look like.  What children should look like and play like.  We have averages and standards and graphs and handouts suggesting strategies.  It all adds up to feelings of inadequacy and striving to meet that ideal of normal.

And then something comes along and stirs it all up like an autism diagnosis in the family.

All of the research and money and support says: here are ways to help your autistic child strive to appear normal.  Best results if you do all the work yourself.  Best results if you put in 40 or more hours a week before they reach age five.  Then, you might be able to pass off your child as typical by the time they reach high school.  You might be able to hope and dream for them to achieve a position on a sports team, or a date for the prom.  Maybe one day they might get employment.  The whole world will cheer for them then when you share it online.  Don’t think past that.

This is very harmful thinking.

It creates impossible standards.  Which lead to failure, which leads to depression, self-loathing, and anxiety.  And that is just thinking selfishly about the parent.  On a child with autism, this creates a pressure to conform.  A pressure to live up to the insane effort mom and dad are putting in, to not let us down, to learn to pass as normal so that we can be proud of you.

As if losing what makes you autistic is what you need to do to be loved.

Now, I know those ideas seem exaggerated and that regular people think that they don’t actually do that, they are not actually perpetuating that, and being unique and individual is okay.  But what about that dad who snapped at me at the playground years ago? What about my friends, who don’t have any idea what to say or do with me when I “meet” them at a playground and spend an hour chasing my son away from the road?

It’s complicated.  While I get that safety is the most important, we need to change the way we respond to people.  We need to change the way we create safe places.  We need to change the way we react to other people and their kids.  We need to fence our playgrounds already.

I want to teach my kids to reach out to and play with other kids who appear different.  I really wish I had said something to them today, like, look Aiden.  That little boy likes playing with rocks.  Why don’t you go play with him?  I want to teach my kids to notice when someone clearly wishes to join in the game.  So kids like Jake don’t have to spend 15 minutes trying to figure out how to get involved only to give up.

As a response to the racial tensions in the USA, I saw a meme of two children playing.  One was white and one black, and it read, Children will play with anyone until someone tells them not to.  The truth of it struck me deeply, but I can see how it applies not only to racism but to ableism as well.  Somehow, we teach our children to judge, to fear, and to avoid that which is different from themselves.  They learn it from their parents and other adults.

Here in our house we are working on trying to avoid calling each other names.  Jake recently has called Aiden, smelly, stupid, fat, dumb, and various other insults.  We are really trying to explain that those names mean things that are not okay.  That we don’t think about other people in those negative terms.  If we are angry, we can say, I’m mad at you!  Or I don’t want to play!  When I was little I remember using the r-word regularly.  Times have changed, and I feel that to say someone is dumb or stupid is just about as terrible.  My kids are going to learn that intelligence is varied, people are varied, abilities are varied, and that everyone is valuable and worthy of friendship.

 

Why It’s So Important to Have the Assessment Conversation

Something that teachers and educators really struggle with is the conversation in which they have to tell the parents that they might want to have their child meet with a pediatrician and do some assessments.  To me, as soon as Jake’s preschool teacher said those words, or something similar, I thought, “He’s autistic.”  I don’t know exactly what other parents think.

There is something of guilt, of blame, of “you should have known,” in the suggestion your child is struggling to the point that it is time to bring in the professionals.  It is very, very hard for the parents.  It doesn’t come from nowhere; our society has long placed the responsibility for children’s behaviour squarely on parents.  If a child does not follow rules or expectations, it is presumed that somewhere along the line, the parents did not teach them correctly.  It is almost always presumed.  Often, it is stated directly with comments.  “If that was my kid, I’d straighten him out.”  “I wouldn’t allow my daughter that kind of free reign.”  “What that kid needs is some discipline.”

When it comes to autism, these comments cut deep.  For much of the 20th century, parenting, specifically mothering, was seen by psychologists, the professionals that is, as a major cause of autism.  Literally, bad mothers were thought to have screwed up their children to the point of mental health disorders.  Leo Kanner, the man who first described and labeled autism, attributed the symptoms to cold, unloving “refrigerator mothers.”  From the 1940s to 1970s, the leading expert in autism, Bruno Bettleheim compared the moms of autistic children to Nazis, and his research and descriptions were widely promoted by media.  Anyone who worked with autistic children in those years did not know any other theories.  In the 1980s, parents were starting to disagree with this theory, but it wasn’t until the late 1990s that it was actually replaced with other ideas.

Parents are often blinded by their love, their hard work, or their innocent ignorance.  They are afraid of what an assessment could lead do.  Disability?  Autism?  Mental health problems?  Diagnosis?  Fear can lead them to blame the teacher, the school, the other students, the EA.  The parents may be struggling with the child too, not knowing what they are doing wrong, what is wrong with their love, with their child.  They may have worked so hard up to this point that they are no longer struggling the same way, having routines that work and a safe place at home that doesn’t lead to the same behaviours that the teachers see at school.  The highly verbal and intelligent nature of many children with autism can act like a red herring, distracting parents from the struggles that their child has when in a group or in school.

Autism Speaks adds fuel to the fear by continually referring to autism as an epidemic, searching for a cure, and citing that autism can destroy families.  The help they provide is coloured with undertones of tragedy and their worldwide recognition gives them a powerful voice.  Their website is often the first place scared parents look to, and it was the first place I looked when the thought entered my world.

You see, what this adds up to is that it is hard for parents to hear that their child needs to be assessed.

It’s also really hard for educators to tell parents that their child needs to be assessed.  Some are simply too scared.  Some don’t know how.  But it is so important.

When a child in British Columbia has an autism spectrum disorder diagnosis, they and their families are given a set of keys.  They open opportunities like support, community, and acceptance.  They give money, new ideas, and release the guilt.  It is not my fault that Jake is autistic.  I did not do this to him.  I could not have loved him any more, can not love him any more.  He has my whole heart.

Art created by Jake

See, the thing is, almost everything we thought we knew about autism was wrong.  And being scared of assessments is wrong.  They are not going to change anything about children who are perfect but struggling.  They are going to help.

Children who are autistic and don’t know it have all of the same hardships as children who are autistic and do know.  However, the difference it made for us was so incredible.  I have the ability to give Jake more processing time when I talk to him.  I have the ability to make the house quiet or find a calm space for him when he is overwhelmed and shutting down.  I have the ability to recognize when he can’t communicate and not confuse that with being disobedient or defiant.  I have the ability to learn everything I can about how he works and use that to love him better and make the whole family function better.

Without assessing him, I would still believe he is rude.  I would think that he doesn’t listen when I ask him to do things.  I would think he needs more consequences for yelling while I am putting his sister to bed night after night.  I would think maybe we are just not enforcing the rules enough.  I would be so wrong.  I have been so wrong.

Without assessing his eyesight, I would not know he needs glasses to see.  Without assessing his hearing I would think he might have a hearing problem, especially when he doesn’t respond to his name being called.  Without assessing his rash, I would not know he is celiac.  Without assessing his brain, I would not know that he is autistic.

It changes everything.

Like the first time you look through glasses and you see that there are individual leaves on the tress.  Like the first time you feel truly healthy after living gluten free for a year.

Like the first time your mom tells you that she knows you are overwhelmed, doing your best, and you need a break instead of a time out.

It changes everything.

I just really want to encourage parents to get over their fears and their innocent ignorance.  We fear what we don’t understand, and autism is something that we can understand and appreciate and love.  I want to encourage teachers and educators to get over their fears and speak love and truth to parents who desperately need to hear it.  An assessment is not the worst thing.  It is a beginning of a quest to know and support and love your child better.  This is what I want to explain to people.

Have courage.  Find and speak truth.  Grow love and understanding.

Good Friends and a Cutlery Diversion

It’s Spring Break.  We took a week away to rest as a family and now we are back with just less than a week at home to spend with friends and our wonderful extended family.  I have had the opportunity to be with some dear friends the past few days and I am so thankful for it.

With one we talked about our boys.  She has a son who is Jake’s age.  She shared some of their struggles with me.  It made me feel so much better.  We laughed together, with understanding, and with tears hiding just around the corner.  It is so nice to hear someone else say, “I don’t know what I’m doing,” or to be able to be honest and say, “I feel I should have done better.”  The tears are from the guilt, the feeling that somehow there must be more ways I can help my kiddo.

I shared one story with her and I thought I could share it here.  Jake, you see, is awesome with Lego.  He is articulate and has a super vocabulary.  He reads and does well at math.  Yet, he struggles with cutlery.  He really has a hard time with a spoon, but a fork? Forget it.  He eats with his fingers, almost exclusively.

For some meals, this is okay. Others, not so much.  We are working on it.  But there are times when I just wonder, have we missed something?  Have we forgotten to teach him how to use cutlery?  He can use a fork, but forgets without constant reminders.  Forgets!  Several times during a meal.  It makes me wonder if the issue is muscle coordination, executive functioning and planning, or what.  Penny already uses a spoon about as well as Jake, so I really don’t think it is a parenting fail, but it’s impossible to say for sure.

There are specialized cutlery sets you can buy for autistic eaters.  They are bright and grippy, with fun handles.  I wonder if we should try them.  It makes me think we can’t be alone in our finger food issues.

It’s the kind of thing that wasn’t such a big deal when he was younger, we had so many other higher priorities.  As he gets older, however, it makes him stand out, and it makes such a mess.  Learning how to use cutlery will be an essential ability for him as he builds social skills.

With dear friends and their kids over for dinner the other night, I was thrilled with Jake’s relaxed and comfortable attitude.  He spent a long time talking with the dad and then another long time talking with the rest of the adults after dinner.  He has been telling me since then that he “enjoys participating in adult conversations.”  Meanwhile, Aiden played an elaborate make believe game in the basement for hours with the other children.  I think he may have been a naughty cat, or a baby while the little girl played mom, I’m not entirely sure.  However, it was clear that the game was full of pretend and completely lacking in rules and scripts.

Both of my boys had a very special time.

Penny ran around like she was a part of everything.  She is going to totally grow up thinking that the world revolves around her despite the fact that she is the third in a family with loads and loads of noise and needs.  She can’t help it; neither can we.  Her joy is contagious, and everyone stops to look when she enters the room.

We are so blessed to have friends that get us.  People who don’t mind spending the evening with a six-year-old “adult conversationalist” who loves the attention and giving his opinion on our conversations.  People who don’t flinch when he doesn’t join in with the other kids.  People who bring their kids here to play with Aiden—I don’t know when he has had such creative control over his own imagination in ages.  Friends who share their own kids’ struggles with me so I feel less alone.  It’s awesome.

 

Thoughts on Celebrating Autism

Amythest Schaber is quickly becoming one of my heros.  She is incredible, Autistic, and well spoken.  Even cooler, she is from my province and there is a remote chance that one day I might actually get to meet her and thank her.  Yesterday I had the chance finally to watch her keynote address, The Celebration of Autism, at the Richmond Autism Resource Fair 2015.  I knew it would be good.  It’s long, 21 minutes, so I had to wait until I had time to watch and listen undisturbed, but it is incredible.  If you would, if you could, please watch it.

I want especially to share some of what she said with you, as it resonated so strongly with me.

You have to watch out for tolerance.  It’s not love or understanding that most of us learn for people who are different, it’s tolerance. Not how to accept, but how to put-up-with. There is no love in tolerance. Tolerance is inequality. Tolerance says, “Who you are is different and wrong, but I, as the right majority, will conditionally allow your unpleasant existence to go on”.

It’s important because I have been raised on tolerance.  I have been educated with tolerance.  Tolerance is so tricky and it is wrong.  I have taught in classrooms where I worked with tolerance as part of my foundation.  It was out of ignorance and misunderstanding, not because that is what I wanted to do.  Tolerance looks at what is wrong with a person, their situation, their behaviours, their choices, and looks away.  It doesn’t understand, care for, or love anyone.

For many, the concept of Autism acceptance is a stretch out of their bubble of privilege that they are not willing to make. The thought of accepting Autistic people exactly where we are, as we are, disabled and human, challenges and joys alike, is too much. They are too deeply entrenched in the culture of cure and its panic-perpetuating tragedy rhetoric. To these people, to these people who try in vain to separate the person from the neurotype, to cut out the Autism, to mould a non-autistic child from an autistic one- the idea of accepting Autistic people as we are is outlandish to them. To these people then, to celebrate Autistic people, and even Autism as a neurotype, is disturbing…

The celebration of Autism transcends the shadows of ableism and the silence of tolerance. Celebration pulls first-person autistic experience and joy into the limelight. The celebration of Autism is the most powerful tool we have to hold back the dark of indignity, and to spread our message. In a world dark with pity, fear, and hatred for people with disabilities, celebration gets people’s attention. Celebration is radical.

This is radical.  And I can see it.  Celebrating with Jake when he is celebrating is enough to convince me.  There are a few things here that I haven’t written about on this blog before that I want to address quickly.  First is ableism.  This is the idea that being disabled or able-bodied is somehow a difference that should be exploited, the same way that sexism, racism, or ageism separate humans into classes that have different worth.  It is a term that I had never encountered before I dove into Autistic culture and started reading.  Certainly, I have been guilty of ableism.  Learning about it is opening my eyes to the prejudice that exists, even within myself.

The other thing is this idea of changing an Autistic child into on that blends in, that is non-Autistic in any noticeable way.  It is an idea that is entrenched, promoted, and wrestled with in Autistic writing.  I am now firmly in the camp of ‘that’s a terrible idea,’ with the caveat that any strategies that help Jake cope and succeed are worth learning and fighting for.  The motivation always needs to be his happiness, esteem, and personhood, not my comfort or embarrassment.

To many of us, our disabilities are vital and intrinsic parts of ourselves, of our identities, the importance and meaningfulness of which cannot be denied. For many of us, disability is as an important aspect of our self as our race, religion, nationality, gender, or sexual orientation. But for too many people, disability is the last holdout of shame, of intolerance, of outright hate. Some of those people are disabled themselves and have internalized a lifetime of ableism.

I do not, nor will I ever, expose Jake to the public as a disabled person.  I do not want to hold him up as inspirational, nor do I want to embarrass him.  However, his struggles are real and if or when he wants to share them, I will support and stand beside him.  Right now, my motivation is to help change culture and tolerance into something more meaningful; acceptance and a truly inclusive culture.  Difference and disabilities are real, and they continue to be a source of bullying and negative self esteem, as well as the scary list Schaber has put together.  Dissolving these ideas in the public will make Jake’s future brighter and safer.

I am amazed, when I find people who should be like me, who are also parenting incredible Autistic children, they are quiet.  We talk quietly, about things that are a struggle and things that we have in common.  We don’t talk about ableism, about neurodivergence, or about acceptance.  It is so strange to me and quite frustrating.  There is a hesitance to say it out loud.

It is this hesitance that continues to hold up that last holdout Schaber mentions.  We have to push through our fear, our cautious quiet, and actually use positive words to expose the shame, intolerance, and hate.  I have a few friends who get it, who see what I’m seeing and hear what I’m saying.  They are a good, safe sounding board for me.  It’s a start.

Amythest Schaber’s blog is here.

A Tiny Hole Pricked in the Dam

Well.  I did it.  I told Jake he is not alone.  He is part of a group of individuals who share similar struggles and gifts, and that being a part of this group means that he is autistic.

He didn’t ask me loads of questions.

He didn’t wonder if this made him special or if it was in his brain.  He didn’t ask if I was autistic too or if Aiden was or what it meant.

He didn’t say anything.

He nodded.  And kept playing Lego.

I waited.  He didn’t mention it at all that night.

He didn’t mention it the next day.

I have to say.  It was anti-climatic.  I was hoping that he would have questions.  My determination to not make a big deal of it stopped me from elaborating on the things that I have wondered.  He will wonder things one day, I’m sure.

He didn’t go to school and tell all his classmates.  I had kind of worried about that.

It was almost as though it never happened.

Except it did.  And the quiet, not a big deal nature of it was good.

The other day at his Tae Kwon Do class Jake had an accident and hurt himself.  Before warm-ups.  Before class even started.  His dad was surprised at the severity of the meltdown that ensued, and class was almost half over before he managed to convince Jake to try again.

This label is important.  The teacher didn’t make a big deal out of the screaming 6 year old with his arms wrapped around his fathers’ ankles.  Dear dad was totally embarrassed, but he responded calmly, knowing that his kid can be a struggle.  That once he is thrown off, it is hard to reset.

They came home, with Jake happy and victorious, and dad burned out and frustrated.  Dad and I discussed strategies, positive reinforcements for calming down quickly, and new visuals that could help.  We strategized.  Jake will learn to strategize.

Then we talked about what the other parents might have thought and how hard it is to know what to say or do when we are out in public and this kind of thing happens.  Truthfully, it is happening less all the time.  But what is there to say?  Do we make excuses, announce his labels for the public, run from the situation and continue the meltdown in private, give up on Tae Kwon Do?  I just don’t know.  Those moments are hard.

I talked with Jake about it after they came home and tried to explain how dad was feeling.  I think Jake understood.  He said that if he was the dad and his kid did that he would be very upset.  He has an unusual way of speaking when he is being empathetic, and I think he was close to getting what was going on.  He is so good, so intrinsically good, I believe that he will get it.

And so, I am proud of myself and my family.  We love our autistic Jake.  We would do anything for him and his happiness, and we work hard with him so that we can all get through each day.  One day at a time.  And one of these days we will talk again about being autistic and what it means.

New Convictions

I guess I am becoming a neurodiversity advocate.  I am not reluctant, merely surprised.  This wasn’t in my plans.  I didn’t know I had it in me.  I didn’t know I needed to.
I have come a long way this past year.

I have decided that I am ready to write about what I think I believe, now.  That sentence is not meant to be wishy washy, but things are changing so fast that it is hard to keep up.  A year ago I wrote about what I thought I believed then.  A year from now I suspect that I will have continued to try to keep up and may have grown my beliefs some again.

Here it is for now, then.

I don’t want to change Jake.  I don’t want to cure Jake.  I don’t want to teach Jake to blend in or suffer through therapy where he works at becoming less obviously autistic.  I want to help Jake learn how to thrive in situations that are not easy for him.  I want to help Jake learn to navigate conversations so that he can maintain true friendships with people who value him for who he is.  I want Jake to learn how to conquer his anxieties and fears so that he is not limited by them.

This may not seem revolutionary, if you have been following my progression on this blog.  It is something that has been rolling around in my mind though, as I am reading Neurotribes and looking at the reactions from the autistic community.  It is also something that has become more important to me as I am struggling to find the courage to explain autism to Jake.  I also have been invited to speak to another class at my school about autism and how to relate to a friend with autism.  I feel like it is so important to ground myself in my beliefs and to know where I am coming from.  It impacts where I go, what I say, and how I act.

I believe that in our community, the ABA therapists who are working with our family are united with us in our goals and are compassionate, kind individuals who see Jake as a person and who have the time and resources to help him.  Therefore, and because the government supports us with funding for the therapy, we are happy to have them be a part of his learning team.

Over the course of his maturation and growth, I am hopeful that he will learn tricks and tools to help him in situations where autism is a disability.  Situations like job interviews, where shifting eyes suggest that he is untrustworthy, would be more successful for him if he could sustain eye contact or find another way to demonstrate his competence.

There is something about people who struggle.  They are made stronger.  The Bible says that it is easier for a wealthy man to fit through the eye of a needle than to enter the kingdom of heaven.  When life is simple and easy, we don’t understand how much we need God, how much we need community, and how much we have to give.  Jake is fortunate that he has us, faith, and a strong community to stand with him as he faces his struggles.

Rather than treating autism as something that needs to be corrected, advocates want it to be seen as something to be accommodated, and that disability is largely situational. If someone is in a wheelchair, you can either focus on curing the reason they’re in the wheelchair and let them wait at the bottom of the stairs until you’re done, or you can build a ramp. Neurodiversity advocates want ramps for our brains. What exactly that looks like is still a work in progress, but I encourage professionals to embrace it. Work with us so we can live our best lives.

http://nosmag.org/neurodiversity-for-therapists-is-not-an-oxymoron/

I feel like sometimes I am the one who needs the therapy.  I need someone to come in to my house and reward me for staying calm when Jake sings the same three notes at top volume for over 20 minutes.  I need someone to reward me for realizing when he is feeling overwhelmed and when he is strategically driving his little brother insane with purpose.  I would love to be coached on how to come up with things to help everyone stay cool and comfortable while I am making dinner.  Unfortunately, there is no funding for that.

I jest, but in truth, I am realizing more and more that it is me who needs to change.  I discovered this website today, https://theantioppressionnetwork.wordpress.com/allyship/  and it explains allyship as

an active, consistent, and arduous practice of unlearning and re-evaluating, in which a person of privilege seeks to operate in solidarity with a marginalized group of people

I am that person of privilege.  Social situations make sense to me.  I thrive on conversation.  I talk out my feelings.  I excel in interviews, in group situations, and don’t notice when things are out of order.  I can keep my train of thought for several days, or several minutes, keep two conversations going while cooking and keeping an eye on three kids.

But.

But I love autistic people.  I love people who are disabled.  I will stand with them work with them.

I believe that autism is a disability.

The distinction people are making is between the medical model and social model of disability. The medical model of disability, for those who may be unfamiliar, puts an emphasis on a disability being something ‘wrong’ with a person. In that model, disability is something to be corrected. Disability itself is seen as a source of reduced quality of life. The social model of disability, on the other hand, focuses on negative attitudes and physical barriers imposed by society, rather than perceived “flaws” in the individual. Neurodiversity rejects the medical model. It does not reject the concept of disability or deny that impairments exist. The primary difference is how disability and impairments are considered and addressed.

http://nosmag.org/neurodiversity-for-therapists-is-not-an-oxymoron/

I had a conversation last summer with my sister-in-law about disability.  She said that it seems like being autistic is a disability mainly because we (society) don’t understand, don’t make it easy, and put up obstacles for people who do not belong to the neurotypical majority.  She suggested that being autistic was almost like being evolutionarily advanced, in a sort of way, except that the society is restricting the advancement.  It resonated with me and I am still chewing on the idea.

 

Force Awakens Dealer by Jake
 
I believe that the goal of therapy is to support Jake and teach him how to manage being autistic. I hope that learning strategies that work for him will increase his confidence and abilities to negotiate within our world and not lose any of what makes him who he is.

I believe that I have a role to play in educating all those I can.  Everyone who knows him, everyone who knows an autistic, everyone who knows someone who is different and who is a minority and is therefore marginalized by the way our society runs.  I can’t tell those in human resources that when hiring, to hire every shifty eyed individual.  However, I can increase acceptance and understanding of different ways of communicating.

Most importantly, I can have faith in Jake.  I believe in him.  I believe in his abilities to solve problems.  I believe in his dreams.  I believe in his heart, his gifts, and his growth.  I believe that he is created by a fierce and loving God who knows what he is doing.  I can wait, I can watch.  I can hope and I can pray.  And I can find what I believe and stand firm in it.

Sesame Street: See Amazing is Amazing!

It’s been almost exactly a year since we received Jake’s ASD diagnosis.  I feel like I have grown and stretched more than I would have thought possible.  I have so many more ideas, so much more patience.  I have so many more conversations about autism.  I think about parenting so differently.  I think about children so differently.  I have examined my heart, my faith, my marriage, my family, my attitudes and my choices.  I have been like the heart that broke, and in doing so, opened up wider than was possible before.  Much wider.

Today I had time to spend checking out Sesame Street’s new autism initiative, See Amazing.  I watched every video.  I cried.  I opened every link, every pdf, every helpful hint.  This is, strangely enough, a wonderful time to be autistic.  Better than ever before.  And by extension, a wonderful time to be parent to one of these incredible children.  There is love in a website.  There is truth in a video.  There is compassion and understanding in strangers’ voices filtering across the internet.

I want to share every one of Sesame Street’s videos.  I want you to watch all of them.  They are short, I promise.  I want everyone to watch them.  I am so thankful for them.  Truly, a huge impact is going to be made.  The one that hit me the hardest was one titled Nasaiah’s Day.  Watch it right now.  I’ll wait.  You can click right here.

This could have been about Jake.  The mom and dad could have been us.  I saw Jake in every second of that video.  The only difference was that when Jake was four, we didn’t know anything about autism and we had no plan, no support, and things were not going that well.

Sesame Street’s videos show several different families, with several different faces and different presentations of autism.  It’s wonderful.  It shows something that I can relate to, cry over, and connect over.  It’s not about labels.  It’s not about explaining all of the intricacies or therapies or anything.  It’s about loving kids, about celebrating what is amazing about everyone, and about being compassionate and open to having friends who are different from you.

I cannot turn off my joy.  Kids who grow up with these messages will be less likely to bully others who are playing alone.  Kids who grow up with understanding and compassion will be more likely to befriend and welcome others and be patient while getting to know them.  This is something that will make Jake’s world less frightening, less cruel, less unfriendly.  I know I am optimistic.  It’s so good to be optimistic.