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.

Job Number 1

It has now been almost two years since we received Jake’s diagnosis. I am starting to see some of the ways God has His hands in our family and our situation. I had just finished an incredibly stressful and emotional year of teaching more than I really felt I should, as I wanted to be able access my Maternity Benefits when Penny was born. I didn’t know if, when, or how I would be able to return to teaching. I had just given birth to the sweetest, easiest baby my little family has ever known, and while I struggled with some post-partum depression, I had a better handle on it for many reasons, one of which was Jake. I had to deal with Jake. I had to get him to kindergarten, deal with everything we were learning about him, and then there was the diagnosis process. There was a lot to get up and focus on every day.I can see now how far I have come.

I can see better where I want to go.

I am coming to grips with what my Father has asked me to do.

He has asked me to Mother these kids. I get to teach now, a wee bit, on-call, just a taste of other people’s classrooms, and it is wonderful. I cannot commit my heart to a class, to spending my precious minutes on prep and marking, because I have a high needs family. It’s okay. I have a special needs family. I don’t get to do more. This is all I can handle, and I can only handle it with help, support, loaned patience, grace, and strength.

I just reread one of my earliest posts, The Role of the Parents, and I can see that I glimpsed the truth even back then. I wrote, “It’s so intimidating to think that I am the autism mom, the one that is going to have a gigantic impact on Jake and what he thinks of himself, what he eventually can do or not do, what he can cope with and what he just can’t.” Right now, I feel like it is becoming less intimidating, and more a part of my identity that I accept.

The school sent home slips of paper reminding parents about picture day coming up. They asked us to fill in the students’ names, grades, teacher, and include any notes we thought might be important. I wrote, “Jake is autistic. He struggles with taking pictures, with eye contact, and with smiling. He loves Minecraft.” I thought it might help the photographer to know and give them a hint at how to get him to relax and open up. My husband looked at it with a sigh, smiled, and said, “Life, is this how we roll now?”

Yes. Yes it is. Because if the photographer understands Jake a little better, Jake will be happier. If the photographer can get a natural picture of him talking about something he loves, that will be so much better than trying to get him to “look at me,” or “say cheese!” Jake would be all frowning, and complaining. “I hate cheese.”

But it’s not just how we roll now. It’s just that I am getting better at it. Back then, two years ago, in kindergarten, they sent the same forms home. Back then, I didn’t know if he was autistic or not. Back then, I told the photographer almost the same message, however.

My colouring page, two fish, brightly coloured, with an antique and elaborate tea cup full of tea. How lovely.

When I became an autism mom, my parenting took a direct turn. But I do not, cannot, become stagnant. This incredible, amazing, beautiful child requires more of me, and God has asked me to do it. So I have been reading, literally, for two years straight, everything that I can find on how to do better, be better, make life better.

I am really excited lately. This past month, as I have read, processed, prayed, and experimented with new ideas, something fundamental in my soul has opened up. It feels bright and light and vulnerable. I have stopped thinking of myself as a teacher who is on an extended maternity leave, and started thinking of myself as a full time Mama who gets to teach sometimes for a break. It’s honestly a little terrifying. I have always hated when my deep identity is forced to change. I struggled hugely with becoming a mother, with becoming an adult, with becoming a working mom, and trying to find pieces of myself which were lost along the way. So I am scared to be changing again.

This time, I feel more that the actual change happened back then, two years ago. When everything in my life was lined up and organized by God so that I could shift into this new position. I’ve just taken two years to realize it. As such, it’s a little like cracking an egg. There are fractures that have been spreading over the past two years, and small chunks have flaked off along the way. All of a sudden, however, the shell of who I was has given way and a bright, new, stronger me is emerging.

I’ve decided to organize myself and give myself some long term goals for this new facet of my identity.

I came up with these.

  1. I will create a happy home that my family wants to be in. As we are a diverse and large group in a small house, I will model gratitude and a good attitude, I will focus on laughter, joy, peace and love.
  2. My children will learn how to manage relationships with each other and with their parents by watching me. I will teach them to love each other by modeling acceptance, compassion, understanding, and connection. They will grow into a family who remains connected over distance, time, celebration and hardship.
  3. I will be present. I will push thoughts of escaping out of my mind and create ways to enjoy and appreciate my kids. I will turn off my devices when they are talking to me. I will turn off my devices during special time with each child every day and I will turn off my devices in the time between dinner and bedtime. I will not drink alcohol to escape. I will not use their screen time as a chance to escape. Rather, I will pray. I will count to ten, or I will remove myself from the room for a few moments to calm down so that I can show them that the people who they are, that the efforts they make, are wonderful and appreciated. Their self-esteem will not be corroded by my lack of appreciation of them. The best way to teach them to value themselves is to show them that I value them.

When I read them objectively, I hear idealism and can imagine other mamas in the same boat laughing and saying that they are unrealistic or don’t account for how hard life is. I get that. I really, really hate the pressure that is on moms these days and I would like to write more about that too. The dream of perfectionism or appearing to have it all together is real and does nothing but create feelings of inadequacy and shame. However, when I look at my goals personally, and hear the love, journey, and calling of my Father to them, I feel like they are more than possible, they are foundational. I have been reading Desperate: Hope for the Mom Who Needs to Breathe by Sarah Mae and Sally Clarkson and it really affected my thinking.

These goals are things I’ve always wanted and tried to do, the difference right now is that I am setting them as the priority knowing that Jake, Aiden, and Penny are my Calling right now. Because really, I cannot expect Jake to be able to manage his autism or his anxiety without me fully plugged in. He has so much to learn about himself. He is incredible, but he is only seven, and I am going to advocate for him and pour love into him until he really knows how wonderful he is. The same goes for Aiden and Penny. I can’t think of anything more important in my life right now.

Ha! Balance. God tells me I must not forget balance. Alright. So somehow I will remember to take care of my marriage and myself too.

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.

 

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.

My Perspective on Autism

I have been working through a course on Autism training for EAs in an effort to collect a few, final credits and learn more about Autism and ways to support and help Jake.  As it is winding down, we were asked to write about our perspectives on autism and if they have changed.  Mine really hasn’t, but I enjoyed and appreciated the opportunity to write about what I feel so passionately about.  It is World Autism Awareness Day and it is Autism Acceptance Month, so I thought I would share it here.


 

My perspective on autism is shaded deeply due to my deep love for my son who is autistic.

I have come to have a deeper understanding of how difficult it is to negotiate the myriad of students with ASD and the other students with special needs and it has increased my appreciation of the teachers and EAs who work with my son.

Things that have not changed for me have become more clear.  I understand that my role in my son’s life is to be his advocate, support, safe place, and cheerleader.  I understand that the position I have as a teacher grants me a very special opportunity to teach inclusion, compassion, and acceptance.  I will be a person who treats disabled people with dignity.  I will teach my students that they are valued, valuable, and worthy of dignity.  I will model how I hope the world will be for people with disabilities and autism.  I will talk about ableism and how we think and view those with different needs.  I will talk about the social model of disability and ways we can be more accommodating.

I have come to a deeper appreciation of how many scientists, psychologists, and experts in the field of autism have been wrong.  Wrong assumptions and wrong science have left deep wounds in the Autistic community.  Vaccines, lack of empathy, inability to learn, refrigerator mothers, parenting mistakes, are just the tip of the iceberg.  Treatment in the past has included electroshocking children, removing them from loving families, and using food and hunger to force assimilation.  It’s no wonder that getting an autism spectrum diagnosis so often leaves parents terrified and in tears.

I will talk about the negative stigmas that follow autism and why they need to be left behind.  I will talk about fear and presuming competence even when people do not communicate traditionally.  I will model patience and explain how behaviour is communication.  I will advocate for employment opportunities for adults and youth with ASD and ways to include adults with autism in our schools.  I will listen to the Autistic community, carefully and attentively, so that I can be able to stand with them.  I will encourage my son to embrace who he is and to learn ways to be successful without pressuring him to pass as neurotypical.

I need to be an advocate for neurodiversity, and the more I understand about it, the more confident I become.  I need to listen in order to participate in discussions meaningfully.  I need to be a support to other parents and educators as they learn and discover how many of our previous understandings about autism were wrong.

My perspective on autism is that it is human and it is beautiful.  It is hard, and it can be painful.  However, it can also be joyful, passionate, compassionate, and smart.  It is incredibly valuable.

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.

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.

A Review of Four Autism Myths

Recently a book was released that is making a huge impression and getting a lot of press for autism. It’s called Neurotribes, and it is written by Steve Silberman. I have not yet read the book, but I intend to.  Actually, I can hardly wait. I have read incredible reviews and cannot wait to get my hands on a copy.  The author, although not autistic himself, advocates for a reimagining and a major change in the way the public thinks about autistics. And it seems to be wonderfully positive.

I read the following article this morning. http://www.bbc.com/future/story/20151006-its-time-we-dispelled-these-myths-about-autism  I recommend reading it fully. It gets right at the heart of how feel, and clearly explains things that I know are true.

The first myth he dispels is this: Autism used to be rare, but now it is common. I know from my experience teaching, that there were students when I started that I really struggled to help. I did not know how to teach them, to reach them. I feel like I failed them. However, I also know that some of them moved on and eventually received an autism spectrum diagnosis. In hindsight, these students were demonstrating what we now know are autistic traits, but even just a few years ago, we didn’t have the understanding to recognize them. It is clear that there are autistic traits going back for generations.  People who were never diagnosed, but shared the same struggles.

Myth number two is this: People with autism lack empathy. I have written about some of my thoughts about this here and here. It is crystal clear to me that this is simply a lie, a misunderstanding of autistics that continually gets recycled. I know I struggle to be empathetic at times, and I can see every day that he doesn’t share this struggle. He is very in tune with how other people are feeling.

The third myth is this: The goal should be to make autistic children “indistinguishable from their peers.” I could and should probably devote some time to sorting out my feelings about this. It is wrong to me that anyone should have to completely change from who God has created them to be. However, being able to work within our society and to “fit in” are very useful skills. To me, Jake’s successes will be what they will be. It is my job to help him to find ways to cope, to thrive in the world he has been born into, and to know that who he is is wonderful. Being unaware of his autistic nature does not help other people to support or understand him. It would be so much better for him to make friends who appreciate and love him for who he is than for him to have to be “indistinguishable” in order to make friends.

The last myth is this: We’re just over-diagnosing quirky kids with a trendy disorder. This myth is hurtful to the families who don’t know how to help their children get through the day. It is hurtful to the families who are facing the difficult decisions about how to transition their autistic loved ones to adulthood or even senior citizen life. It’s hurtful to me, as I can see now just how incredible a diagnosis can be and what kinds of positive change can come from belonging to a community of support.

My husband and I had a conversation last night about last Christmas holidays. We took our kids sledding with their cousins. Jake had been regaling us with stories of sledding at school on his recesses, so we went there to see what he could do and have some fun. We had just discovered his autism two months prior. Well. Jake thought that sledding was the most fun when you climb up the hill and toss your sled down. Then you run around yelling.

We tried hard to get him on his sled. His cousins had a great time actually sledding. His dad felt like Jake was missing out on this chance for happy memories. I couldn’t believe I had been cheering for him daily over his sledding victories. I couldn’t believe I actually paid money for the sled.

Now, almost a year later, we have changed. We have learned and we have grown. This kid is quirky, yes. But he is also autistic. And that means that his way to have fun is fun. His memories will be happy when he is allowed to be happy. His brain is different. So of course sledding for him is different. It is not an over-diagnosis. It is a key to understanding, love, strategies, and hope.

 A Series of Updates

  1. Jake now eats his vitamins. The Star Wars games didn’t work.  I think they were too complicated.  We found a system, though, where he shows me “his moves” for a minute, powers himself up, so to speak, and then downs the vitamins.  Awesome!  It has worked consistently for about 12 days now and I feel like we have created a new routine that works.
  2. I am trying to use the words autism and autistic more in front of Jake, working them into conversation within earshot. Baby steps.
  3. The IEP meeting was great, and afterwards I felt much relief. He is really only struggling with social issues at school right now.  We discussed enrichment for him.  He really is such a neat kid.  They spoke so positively about him.  He’s sweet, polite, and kind.  He is respectful.  He is not defiant or interested in causing trouble.  He doesn’t disrupt his classmates.  The one day that he came close to a meltdown at school, his EA correctly realized that he was feeling overly anxious and provided him a chance to calm down and reset, avoiding a potentially bad situation.  Apparently the other students all get along with him and like him.

I am going to work at having some more social opportunities for him, playdates and stuff.  I don’t want to overload any of us, though.

  1. We have also started Tae Kwon Do with both Aiden and Jake, and that adds more stuff to our routine too. It was really hard to get Jake into it.  His dad did Judo as a teen, and won several medals that the boys love playing with.  His cousin also does Judo, so naturally Jake thought that Judo was the only martial art that is acceptable.  Unfortunately, where we live there is no Judo offered, Tae Kwon Do is our only option.

We watched some videos on YouTube of kids practicing and Aiden was sold.  He was so excited he could hardly stand it.  The first class he was beaming the entire time.  Jake, however, refused to participate, and we agreed that he could observe and hoped that he would come around.  The benefits were so obvious.  There were much older kids, teenagers, mentoring the beginners.  The relationship possibilities thrilled me.  There was a great focus on practice and support.  There was a lot of structure and repetition.  There were clear goals and rewards in place.  I just felt like it was exactly the extra-curricular activity for us.

Jake was still not sold.

And so we turned to our standby for such situations.  Bribery.

We agreed that if both boys participate in 35 Tae Kwon Do classes, we will buy them a big Lego Star Wars set.

Well, I had barely whispered the idea and Jake was all of a sudden completely turned around and ready to go.  He had to wait three days before he could finally participate.  Oh!  He’s so funny.

And so, they both went.  They did great.  They learned lots, and Jake was already correcting Aiden on Tae Kwon Do etiquette.  They came home and put shiny stickers on their new 5×7 sticker grids that we printed to chart their progress.

I am thrilled.

  1. Jake has missed parts or all of eight days of school due to fevers. I am jumping into the gluten free/casein free diet in hope of making a difference with this and I have no other ideas.  We are working as a family to try to slow down and make time for him to relax and play.  I have booked an appointment with his new pediatrician to discuss it but it isn’t until November.  All in all I feel quite frustrated and helpless with the fevers.  They are so hard on him.     
  2. The other change around here is that all of a sudden, Jake is reading.

At the Meet the Teacher night, his teacher suggested that if we read with our kids for eight minutes a day, four days a week, they could earn a reward.  I am motivated by rewards just like my munchkins, and so I did not want Jake to miss out.  I pulled out the reader he brought home, and like nobody’s business, he read it!

The next day I tried him on something less familiar, digging out Green Eggs and Ham.  Sure enough, he read that too!  The first half, anyways.  Tonight he read Go Dog Go to his dad.  I am incredibly impressed.  That teacher, she is teaching him to read!  He is getting it and is so proud.  He was just grinning so adorably tonight.  I’ve heard that there is a light bulb that goes on when kids learn to read.  I had no idea how amazing it is to watch.

It’s so good. I am so proud.  There is so much evidence of God’s love here and we are so blessed.