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.

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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.

Observations and Reflections from Halloween

Halloween was interesting.  This year, Jake he decided that he liked scary decorations and actually wanted to put some up in our yard.  I declined.  He wore a Chewbacca costume with a mask.  That he loved.  A mask!  Covering his entire face.  This is incredible to me.  His first Halloween he was a tiny baby and I put him in a tiger pajama set.  When he was one he wore a turtle outfit that was soft and warm and he had no choice about.  When he was two he wore a full monkey costume that I picked out again.  He didn’t love it, didn’t get it, and never wore it again.  Then when he was three and four he wore a hooded sweater with an animal print on it with no face paint and only my word that it was a costume.  Truly, he looked adorable, like adorable Jake in a sweater.  When he was five I carefully prepped him and set him up in a fireman outfit.  It was simple and easy and he practiced at home even a few times.

When he was three and four he didn’t once wear pajamas to preschool on pajama days.  He has never done his hair crazy on a crazy hair day.  He has not worn a career day costume, a twin day costume, or a hero day costume.

But this year he wore a full Wookie costume.  And he loved it.

Our little family had joyfully trick or treated to about 8 houses in the neighbourhood when he slipped on a patch of wet cement and fell down.  He dissolved in tears and lost all control, all joy, all peace, all hope of continuing.  He had to go home and spent the rest of the evening answering the door and handing out candy with his sweet Oma.

Aiden continued trick or treating another 40 minutes or so.  It was a blast.  He was so thrilled and we enjoyed the time with just him immensely.  I am getting better at seeing what Jake needs to be happy is just different, and that it is okay so long as he really is happy, and he was.

When they were reunited, the boys exchanged stories about the other trick or treaters they had seen and ate some treats.  Aiden had so much more candy that I poured all of it into one big bowl and declared it was for them both to share.  Mom’s word is law here, and they accepted it without any problem.  After all, they were eating candy.

I am left in awe and wonder at the whole event.  The differences between my two sons seem to be increasing right now.  Despite Jake’s growth, progress, and maturation, Aiden is always going to be the one who wants to be out later.  He will be the one who wants to join the baseball team, to go down the waterslide.  Aiden will be picking between girls in high school.  Aiden will be popular, confident, athletic and social.  Aiden will have three times as much candy.  Aiden will have a date for the dance.  Aiden will not need me like Jake does.  He will need me, but it will not be the same.

It’s a blessing, to be sure, that Jake is autistic and doesn’t notice all of this yet.  By the time Aiden notices, he will be older and I am praying, he will be deeply compassionate and loving towards his brother.  I am praying for a strong and true friendship between them, that when they get to middle and high school, that they can support each other, be friends with each other’s friends, and stand beside each other through their tough times.

Aiden hit the pillow Halloween night and fell asleep to peaceful dreamland instantly.  He’s so much like me.  Jake lay awake, replaying the day, I’m sure, and listening to us downstairs as we answered the door and continued to give candy to the stragglers.  He couldn’t sleep until I had told him what their costumes were.  They are so different, my boys.  And I love them both so much.