This is a hard one to write.
A few days ago, my friend Jess met me at the sensory gym with her daughter Brooke. It was the last day of our very long holiday break. The exact purpose for the gym unfolded before our eyes as Howie and Brooke played together in the gym space while Jess and I talked.
After about 20 minutes of playing and running around, Howie came over to me and climbed into my lap. Jess took out her phone and snapped a few photos. She sent them to me later that afternoon:
(photo credit: Jess)
I spent the rest of that night thinking about those photos.
True confession time?
When I saw that last picture, my stomach hurt. My heart hurt.
I could only see the sensory seeking in this picture.
His hand in my hair. Crawling all over me.
The constant requests for squishes. Asking to “tunnel” : when he puts his hands on my neck and asks me to press down on his hands with the side of my head. Begging for “snuggles” that aren’t really hugs. The “mom will sit on my feet” demands.
I saw a dysregulated kid who had been out of school and out of a routine for too long.
I sent Tim this text with the last photo: “Jess captured how I spent all of vacation.”
“Yup.” was the reply back.
The following morning, I changed my personal Facebook profile picture to that last photo.
The comments I got from friends and family ranged from “Love is…” to “That is just precious!” to “So sweet!”
And the one that made me cry: “That’s true love. You being a non-hugger and all – this is ALL love. Beautiful!”
Guilt came flooding in.
Everyone else saw love. Affection. Connection.
The emotions I didn’t see.
I get so wrapped up in everything SPD/autism and looking for the meaning and cause of every single action and reaction…
I sometimes miss the beauty and the “normalcy” of these moments.
Of so. many. moments.
Taking him out to shovel the snow is “heavy work”, not just an outside fun activity together.
Swinging high on the swings has a purpose, not play.
A hug isn’t a hug. It’s a need for deep pressure.
Truth is, I’m the only one he will hug and snuggle with like this. He refuses all personal touch from his dad and older brother and relatives. He will squish under blankets and pillows, but skin to skin touch is reserved for me. Has been since he was born.
Because I know too much, I saw it as a sensory issue for him.
But to everyone else, it’s a loving bond between mother and son.
Cue guilt.
After reading those comments, I clicked on the photo on my phone and looked at it again.
I took a step out of my “autism mom” role and became “Mom”.
In those photos there is the smile. The calm. The love.
I can see that’s what Howie sees when he looks at me.
This is our connection. Our affection.
His safe place. Where he feels the most at peace.
I see it all.
And I feel at peace now too.
“love I get so lost, sometimes
days pass and this emptiness fills my heart
when I want to run away
I drive off in my car
but whichever way I go
I come back to the place you are
all my instincts, they return
and the grand facade, so soon will burn
without a noise, without my pride
I reach out from the inside
in your eyes
the light the heat
in your eyes
I am complete
in your eyes” – In Your Eyes by Peter Gabriel
January 10, 2014 at 1:22 pm
This is so thoughtful and true. Thank you.
January 10, 2014 at 1:31 pm
thank you.
January 10, 2014 at 1:30 pm
omg. omg. I knew I should not read this in the middle of my work day. So many emotions after reading this, A.
But, one thing I just really needed to say to you. You missed one more thing in all of this. You missed how much freaking love is wrapped up in how well you know him and what he needs. You don’t know all those things he needs because you are an autism mom, you know them beause you are a mom who loves her boy so much there is nothing you wouldn’t do/learn to get him what he needs. That my friend is also part of the love in the picture.
January 10, 2014 at 1:32 pm
damn it. I should know better than to read your comments without a tissue.
Thank you. That means so so much to me. More than I can express.
January 10, 2014 at 1:37 pm
i took those pictures because i was overwhelmed by the love between you two. the joy on hero howie’s face, the freedom to fully and completely be his giggly, happy, light-filled self in the safety of his mama’s arms — it was something to behold. i’m glad you saw it too. love him. love you.
January 10, 2014 at 1:39 pm
need more tissues. thank you. and thank you for showing me something I needed to see. Love you too.
January 10, 2014 at 1:50 pm
What really beautiful pictures. I think that sometimes we forget…. regardless of the autism, our kids are still kids and joyful moments are just that, joyful comments. Have fun collecting more happy memories.
January 10, 2014 at 2:01 pm
Yes. That’s it. Exactly. Thank you.
January 10, 2014 at 1:59 pm
Beautiful, amazing, truth. We all get caught up in it, especially being the Mom’s but too we all need that reminder to slow down and remember the beauty and joy that is there too, thank you so much for sharing this, great reminder for me :).
January 10, 2014 at 2:02 pm
I wrote it as a reminder for me too. Thank you for the kind words 🙂
January 10, 2014 at 2:10 pm
I did NOT need to feel guilty right now… darn it, Alysia! But when I look back on our winter break, I see a lot of the same from myself. How lucky for you that Jess was there to help you step back and see the beauty of those moments. How lucky for me that you were there to post and remind me too.
January 10, 2014 at 2:13 pm
Such great introspection! 🙂
January 10, 2014 at 2:54 pm
awesome
January 10, 2014 at 2:59 pm
I think you missed one part. It is all sensory, it’s just that some of it is for the heart and not just the body. 🙂
My son adores my hair as well but I don’t chalk it all up to just sensory for his body because in those moments he is smiling and happy and wrapped so close to me that I can feel his breath on my cheek. And right there in that moment he could be doing anything in the world but he chooses to be right there with me, connected to me. Heart to heart, hands in hair, smiles that reach our eyes. Connected.
Wrap your soul in those moments, little mama, because they are EVERYTHING that we live and love for. Everything.
January 10, 2014 at 3:25 pm
So, I over-analyze everything. Especially photos taken by someone else that capture a moment in life. I look at the hand placements, the focus of the eyes–I see the struggles and the overloads and the little quirks that mean something in each photo. And then these things taint my memories of the actual event too, as I see it all through the “autism/sensory lens”. Thanks for the reminder that my kids just see the love I have for them in it all.
That’s what really matters.
January 10, 2014 at 3:53 pm
Man, everywhere I turn today (online) there is an overwhelming demonstration of LOVE. Love for our children, love for our friends…it’s everywhere if we just open our eyes to see it.
I’m so glad Jess was there to capture these images for you. And thankful that you shared them. The love is palpable, visceral. Revel in it, my friend.
January 10, 2014 at 4:04 pm
His smile says it all x
January 10, 2014 at 4:04 pm
It’s all mixed up together, isn’t it? Life is never just one thing or the other but a beautiful grayscape of shapes that fit together.
January 11, 2014 at 3:00 am
This is exactly what I wanted to say. When I saw those pictures, I was teary eyed before the confession–the connection here is so obvious. My little guy is a hugger and hair lover, too. Only, I realized that it isn’t autism that makes him want to touch so much as his preferred way to connect. He likes hugs and hair. He shares that love by reaching out. When I saw your pics I immediately thought of my little guy and if he wasn’t already in the bed, I would have gone and stolen a hug from him 🙂 just love it! What a beautiful little guy!!
January 10, 2014 at 4:54 pm
I see and feel the love…..beautiful.
January 10, 2014 at 7:23 pm
In the photo I see a spiritual teacher and his student. Most people only experience reasonable, conditional love, but we get to live a life of unreasonable, crazy, intense, unconditional love.
January 10, 2014 at 7:26 pm
This is just beautiful. I think it happens to most, if not all of us. We spend so much time and energy over analyzing every little action, every nuance…. It can be hard to see the forest through the trees. But the smile on his face, that he came to you for that squeeze, that he wanted your hair, your skin, your touch… That’s the love. So beautiful. Thank you for the reminder.
January 12, 2014 at 6:28 am
WordPress really needs to have like buttons for the comments. I look at pictures of my kids when they were young and I see the autism, too. Even now, I do. Yet, I remember after our youth pastor’s wife saw me ruffling my son’s hair, saying to me, “I wish I was as close to my son as you are to yours.” He was in his teens at the time.
January 12, 2014 at 9:54 am
It’s sometimes very easy to get wrapped up in autism that it’s harder to just see things like everyone else. You have to constantly be “on guard” for things that might set off your kids. I am glad that you were able to enjoy the photos again. I will say that as my boys have gotten older, when I look back at pictures from when they were young, I have a much different view point of them now. I am glad you got to realize this change in perspective now, instead of waiting years like I did.
January 13, 2014 at 9:14 am
Sometimes when we are so wrapped up in the jumbled garbley-gook of life we need to be reminded of how awesome we truly are through photographic evidence. I totally get it. 🙂
January 14, 2014 at 1:38 pm
[…] And it was like the universe was trying to tell me something after my last post: […]
January 14, 2014 at 2:42 pm
Oh, Alysia, I love you so much. Boy, can I relate to this post. So, so much. So much! It’s beautiful. And a wonderful reminder to enjoy the moments, in whatever form they might come. You are a fabulous writer and an even better mom.
January 15, 2014 at 4:15 pm
Finding and holding that balance of being autism mom and just mom. Love this post.
January 23, 2014 at 11:50 pm
Wow. This was the first article I’ve ever read on WordPress. That was incredibly soulful. Having loved someone I suspect with Aspergers, I related to your epiphany a lot. Thank you.
April 26, 2014 at 9:05 am
[…] It was vacation week this week and Howie needed to catch up on some work from school. He had begun to check out about a week before vacation started and work wasn’t getting finished. Yesterday morning he came to work with me and with a lot of reinforcers, we got down to work. He was working really hard on a math sheet consisting of addition and subtraction of three digit numbers. He was concentrating really hard on watching the signs and borrowing or carrying when necessary. After every question he asked for a mom squish. […]