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.

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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.

 

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.

 

Autism, June and the Spoon Theory

Several months ago I read about the Spoon Theory, and it made sense to me. Lately, however, it has become clear that it is vitally important that I deeply understand and respect it. Jake is living with a set number of spoons that need to be carefully managed to avoid falling apart.The Spoon Theory was described by Christine Miserandino on butyoudontlooksick.com as a way to help her friends understand how she is living with a chronic illness. It describes how the energy you have for the day with a limited number of spoons. Each activity and interaction you encounter in a day uses up or requires a spoon or two for payment.  

For example, you start the day with 15 spoons. You get dressed, that takes a spoon. You eat breakfast, that takes a spoon, and you brush your teeth. Three spoons gone before you leave for school. Then you socialize with classmates before class, one spoon, follow the teacher’s instructions for the day, 5 spoons, and so on. I imagine that Jake uses about 12 spoons before he gets home from school. It seems that for many autistic people 12 is the standard of all they get. I figure maybe he gets more because he is so young and energetic. Once you are out of spoons you are out, there are no more that day.

I have read from other writers who have expanded this theory to describe how going through particularly stressful appointments or days lead them to “borrow” spoons from the next day, leaving them extra drained and weak. People have described being without spoons leading them to spend the day in bed, to be irritable, to lead to meltdowns or shutdowns, or overwhelming exhaustion.

I get it. It’s a great metaphor. I think anyone can relate. The difference is that I can recharge with some downtime, some prayer time, or even food. I can take a deep breath, sit alone for 15 minutes, and get back to parenting. And I’m pretty sure I have more than 15 spoons a day to work with. I probably truly have at least double that if I am seriously considering.  

Recently, I have noticed that I need to keep track of Jake’s spoons. I need to create downtime for him. I need to allow space for him to rest and not use any spoons. I need to recognize what things cost more spoons for him. For example, he has told me that Monday morning assemblies at school are hard for him because there are so many people there. The whole school, actually. Okay, so he has been going to these assemblies all year. I need to be aware and make sure that Monday mornings don’t require extra spoons and that Monday evenings are easy on him.

Likewise, I need to pay attention to what he wants to spend his spoons on. He has taken an interest in playing baseball lately. He is just developing his skills.  But he wants to play and he wants to try. Baseball is really, really not an independent play sport, though. I need to toss the ball with him. I need to clear my brain and my schedule to make time for that instead of what I would otherwise wish to get done.

As the school year is ending, Jake is exhausted. Wiped out. I can’t get him into bed early enough, and he wakes up still tired. He is low on spoons. In my wisdom, trying to save money on very pricey gluten free bread that we eat a loaf of every two days, I made smoothies for the kids for breakfast one morning last week. You would have thought it was worms in brussels sprouts blended in a cup instead of strawberry cream deliciousness. They hated it. They cried. They argued. They screamed. They refused. They tasted and declared it disgusting. Jake took an hour to drink about three sips. By the end of this misadventure, I was exhausted. They were a mess. Jake was starving and trying so hard, and he just could not drink it. Frustrating does not seem a strong enough word.

In retrospect, bringing in a new food in June, when he is already low on spoons, is a bad idea. He could learn to love smoothies, I am sure, if he was rested and there were no demands on him that he knew he had to face that day. The pressure was just too much. He had to drink a breakfast that he was unfamiliar with on a school day when he was going to have to go be around people, pay attention, and follow rules all day. The meltdown was pretty epic. I also felt like melting down. But I am the adult, the neurotypical, the mom. So I stuffed down those tears and promised myself that one day, far, far in the future, it would be a story that makes me laugh instead of cry.

I have been working very hard on a visual schedule for this summer. It’s my hope that if I put a lot of effort into preparing it well, I will be able to use it regularly and for a long time without a lot of effort daily. I want using it to become routine. I’m digging into my teacher mode to make our home less stressful and a place that requires fewer spoons. I am realizing, as I do this, that I need to schedule down time daily for Jake, and also weekly. I need to be able to tell my friends, no, today is not beach day, perhaps you could join us at the playground instead. This goes against my flexible and social nature but does appeal to my love of organization.

I was reflecting with my sister today that while I could say that I want to learn to be able to say no, what I really need to do is own my yeses and my nos. I need to be clear about my priorities (Jake, Aiden, and Penny, and the sanity of my household) and pick what I want to do based on that. So what I need to be is okay with saying no. I do it, but then I have guilt and try to make up for it. I’m also trying to own the things I say yes to. Because usually I say yes because I feel like I should. And no to what I really want. That seems a little confusing.  

The idea is, routine, simplification, and being picky will bless my family more that spontaneity or extra social time in the summer. Not that we can’t be social, I just have to watch the spoons and the routines and make sure Jake can handle it. I need to embrace that, remember my motivation, and own it.

If you are one of those people who gets some of our spoons this summer, the best part is, you have read this and know how treasured and expensive those spoons are. You will be understanding if Jake needs time alone or to rest, and you will appreciate the time we have together. That is the biggest beauty and meaning of the Spoon Theory. It brings people into what someone with autism or chronic illness is going through and builds compassion, understanding, and appreciation of the time you have together.

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.

 

Lack of Focus? The Parent Teacher Interview

We received Jake’s report card last week.  It’s wonderful, full of encouraging, positive comments, and he is meeting all of the learning outcomes for grade one.  But one comment came up a few times.  The teacher said that Jake has trouble paying attention when there are instructions given.  That he is struggling with focus, and that if he tried harder he would be able to follow the set of steps he needs to do.  This trouble is happening in math, language, and art.  Yet his teacher describes him as knowing how to do his math and I have seen him work on his phonics and spelling.  He certainly can do it.  And art?  He’s struggling in art.  He comes home from school and spends hours drawing and colouring every day, but I can certainly believe that he’s struggling with the art projects in class.

I’ve sat working through this for a few days.  But you see, I’m struggling with it.  I certainly think he is capable of being distracted.  I know he can lack focus and I have seen time and time again how difficult it can be to get Jake to pay attention.  But I think there is more happening.

You see, I am not done learning about autism.  I am not done trying to figure out ways to help Jake.  And I have been learning about executive functioning disabilities.  Executive functioning is the name for the ability to follow a series of steps to accomplish a task.  It is something most everyone struggles with at times, as we are distracted or fall victim to procrastination.  However, in autistic people, the problem is that despite their best efforts, even when they give it their best, they often struggle to follow a series of steps.

It’s as if someone asked you to get ready for bed.  You might go to the washroom, brush your teeth, get into pajamas, and say goodnight…  You might follow that with reading some books and saying your prayers, then going to sleep.  However, if you were autistic, you might start by going to the bathroom.  Once there you would forget why you are there and start to run a bath.  Seriously.  Or maybe you made it through the bathroom but then cannot remember what to do next.  Or maybe you know you need to brush your teeth but the toothpaste is not in the same place as last night.  So you start wondering if someone broke into your house to steal the toothpaste and now you are scared and paranoid and you forget all about what to do next.  Seriously.  It is a disability that is connected to a certain brain function that holds onto the larger goal – going to bed, and therefore follows through to get you there.

I know Jake has problems with executive function. We used to think it was a short-term memory issue, but as I am learning more, I think that there is more to this. There are ways to help, such as following the exact same routine every night, so that it becomes easy to remember, or making a visual list that he can refer to so that he can see what step comes next.

So I am going to meet with his teacher and try to explain this and ask for help.  I am going to ask that she makes visual lists showing step by step what she wants him to do in art.  I am going to ask that she give him a reference for his math that shows, visually, what she wants him to do in order.  And I am going to ask that she or his EA help him figure out the instructions and steps in spelling and phonics.  It is the first time I am asking for accommodations to be make for Jake in school.  It is the first time I am going into a parent teacher interview with things I want the teacher to do differently.

I am nervous.  I really love his teacher and I really respect her.  I am conflicted.  I don’t want to ask for Jake to get an easy way out or to be given so much support that he isn’t actually doing the work himself.  However, I cannot unlearn what I have learned.  I believe that he legitimately struggles with this disability and that the accommodations I am going to ask for will help him to focus and thrive.  I honestly would not be surprised if he can do more math, more language than they are asking for.  However, he needs help with the steps and staying on track.

Love and Empathy round 3

I cannot get enough of my son.  My Jake.  My autistic son.  The one who drives me to insanity and who never stops talking and who asks me to do the most ridiculous things.

He is so beautiful.

He loves so much.

He is bursting with love.  He is overflowing with it.  He can hardly sleep because he just wants to be near me.  He just wants to kiss me one more time.  He just has one more “I love you” and one more question about Star Wars to ask me.

He follows me around the house.  Sometimes holding onto me.  Sometimes he brings his whole world where I am.  This afternoon I had to fold laundry so he brought everything into my bedroom.  Everything being a dinosaur, a long piece of brown craft paper crumpled, two large cardboard boxes, my woven baby wearing wrap, some Lego figures, and a lightsaber.  This was all needed to show me how he would film a trailer for his movie.  He’s a director these days.

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A Lego Star Wars battle.

It makes me love him even more.

I want to actually follow through on my promise to have a sleepover in his room over Christmas holidays.  I have been putting it off for so long, and I know it would mean so much to him.  I will not get much sleep, but I hardly get much sleep anyways, what difference will it make to me?  It will make all the difference in the world to him.

I am completely over the empathy question (see Empathy round 1 and Empathy round 2).  This boy, he loves and feels so deeply.  It challenges me to love deeper and more.  I am learning how to show love and say “I love you,” and I truly thought I was an expert at that.  I don’t know how long it will last; surely little boys grow up and stop wanting their moms to snuggle with them, but it is so, so special.

I have read many blogs by moms who write about how their autistic children have shown love, true, deep love, and it comes out hard to understand.  I don’t know if or how I can avoid that.  How can I explain that when Jake loves, it is consuming?

I am learning so much about how to love my God, how to love my husband and my other children, from this one boy.

So about empathy.  We have adopted a kitten.  She is adapting extremely well to our noisy, busy household.  And the kids love her.  Just love her.  Penny squeals at her, pulls on her fur and her ears, and is trying to learn how to be gentle.  Aiden lifts her up, lugs her around, swings her, bounces her, hounds her and tortures her, all in the name of love.

But Jake.  Jake whispers to her.  He searches for her and gets right down to pet her.  He giggles gleefully and uncontrollably when she touches him.  He will not pick her up.  He will not push her, pull her, poke her, or bother her.  He leaves doors open for her and never forgets to feed her and give her fresh water.  He lies perfectly still when she jumps on his bed so that she won’t startle and leave.

That is empathy.

That is Jake, understanding how a kitten might feel.

That is Jake, realizing how painful and scary it can be to feel trapped, restrained, and touched.  I have not one time had to tell him to be gentle with the cat.  He is cautious and caring.  He shows his love in ways that amaze me and seem beyond his years.

I try to tell him how much he means to me.  And then I worry that I am telling Jake this more than I am telling Aiden or Penny.  I try to show him how much I love him, and it never seems like enough.  It really isn’t, as he follows me, telling me that he just needs more love.  But I worry that I have not shown enough to Aiden or Penny or my husband either.

I want to give more, and I am swinging on a pendulum of feeling like I just adore him, and life, and all these incredible children and moments so much!  And then I switch to feeling like they need more than I have to give and I am wholly inadequate and can never give them enough.  Thankfully this is love we are talking about, and there are always ways to give and share love.

I am trying to love Jake like he loves our kitten.  To see what he feels and love it.  To be there for him, to be there for all my kids, and not be frustrated at them.  Right now the pendulum is all the way over in the incredible love zone, and I can’t wait until the holidays when they are all home all the time.  I just can’t get enough of him.