This won’t be a story that has a sweet little lesson by the end of it and there are no inspiring quotes or tips on getting well. It’s just one of those real life stories, though I admit it probably doesn’t sound like it could be real life sometimes.
Of my twins, there are a lot more stories about Will. He’s got some language, and Owen is 100% non-verbal, so that is part of it. We believe that Owen is likely more developmentally challenged, so his understanding and our interactions tend to feel like they would be with a toddler. He can be cheeky and playful, but he’s obvious about it and doesn’t seem to have it in him to be strategic in any way. But then there’s Will – who has all the markers of a typical teenager, but he just lacks some of the skills of a neuro-typical person (but he’s got some skills that outshine everyone to the point of touching on brilliance). Will has a hilarious sense of humour and it’s even funnier because he can cut you at the knees with his disinterest when he’s over you. So in Owen’s quiet, he doesn’t tend to get the spotlight as often as his younger twin.
My relationship with Owen has so many layers, perhaps more than either of my other two sons. There is so much that is unspoken – literally – that it is not easy to put words to what goes on between us. I could sum up our communication by saying that we are connected with our eyes, in looks that are instantly understood and interpreted. But there is much more to break down about what a relationship looks like with a person who is non-verbal and developmentally delayed.
I can remember holding Owen in the hospital the day after he was born. I looked down into his sleeping face and he already had that crease you get between your eyebrows when you’re stressed or concentrating really hard. He had a ring of fuzz around the circumference of his head and I knew I was having a Benjamin Button foreshadowing moment, seeing what he would look like in his senior years. I remember whispering to him, “you’re my Elmer Fudd, little man. You’re an old soul.” He opened his eyes and even though I knew he couldn’t see me, I felt like I was staring into the pools of wisdom. Right from the moment he was born, he was a quiet watcher with his big ole baby blues. In his eyes you could always see him thinking, could almost see the wheels turning, trying to make sense of what he was observing.
Those eyes of his would start to drift off in the months to come. It’s not something we realized at the time, but looking back it is easy to remember. They could be hyper-focused on things he loved: his big brother Jake, his fingers, images of the singing/dancing Wiggles on tv, a dangling thread, and then the upward gaze with his cheek pressed against the window pane, staring at unknown things we couldn’t see outside up in the sky. Holding him close while rocking in the glider, we would have moments where he could stare into my eyes for hours, rarely blinking. Every minute would add to the tether that connected he and I. It was different from Will. Will was almost spastic, always moving, always kicking his arms and legs, rarely calm. Owen was my guy and Will was his dad’s when it came to late night feedings, mostly because Owen would take so much longer and Will was a guzzler-over-and-done and Dad could get back to bed so he could be up for work in the morning.
His eyes always felt like they were telling me something that words could not. Even at that very early age, were they telling me he knew the road ahead would be a quiet one for him? Did he know he would forever be an observer?
The words for Owen never came. There were some sounds and some attempts at babble, but even compared to Will, they just weren’t possible. Until we finally landed on an incredible speech pathologist years later in Calgary, we didn’t really understand that he had a separate diagnosis for this lack of speech. We were told by her, that Owen had one of the most severe cases of speech apraxia that she had ever worked with.
Childhood apraxia of speech (CAS) when diagnosed in children—is a speech sound disorder. Someone with AOS has trouble saying what he or she wants to say correctly and consistently. AOS is a neurological disorder that affects the brain pathways involved in planning the sequence of movements involved in producing speech. The brain knows what it wants to say, but cannot properly plan and sequence the required speech sound movements.“Apraxia of Speech”. National Institute on Deafness and Other Communication Disorders.
It took years to figure out all of the challenges that Owen was up against to produce speech, let alone clear sounds. For reasons we haven’t figured out, he couldn’t bend his head back to look up – we hadn’t clued in. He used to lay on his back on the floor to drink from his bottle, with his legs up in the air. We later realized he did this because he wouldn’t have to bend his neck. He was on the bottle until he was 7. It took years with an Occupational Therapist (OT) and a Physical Therapist (PT) until he could finally drink from a sippy cup and I’m happy to say he can now drink from a cup. But it wasn’t just his neck. It’s his lack of muscle control with his tongue. When you brush his teeth, you almost have to put your own finger in his mouth to move his tongue over to get access to his teeth – he just can’t move it where it needs to go. When I observe how he eats or drinks, he’s a gulper. I don’t think he can properly manipulate food in his mouth to guide it safely down his throat to swallow. He has mastered safe adaptations to eating to avoid choking, but it explains so much about why he has food issues – why he is so “picky” = selective with his food choices. These are all things we have figured out on our own as time has gone on, but how I wish we had diagnosed it all in those early years, because maybe we could have found therapies and treatments to help him so he didn’t have to adapt so much. Because through all of the years, there have been what we would call behaviours, but I believe they are better understood as coping strategies associated with his fears and trying to keep himself safe. Does that make sense?
I put myself in his shoes as best I can and I think about what it must be like to have someone take a fork with a hard and crunchy object on it, coming towards my mouth – a part of my body I can’t even properly place, sense or feel on my own face. And I prepare for the overwhelming textures and tastes and temperatures, all while knowing that I won’t be able to get the muscles in my mouth to do what they need to to break that food down, to get it down my throat without it going down in a hard, scratchy chunk, sliding down in a ball like lead to my belly. Just imagine it.
Of course dinner time is going to be difficult. Of course it would be! It makes me want to cry just thinking about it. So when Owen only has 4 or 5 foods that he will eat, do I keep trying to force him to experiment with new ones? Do I need to feel embarrassed or apologetic when I tell his school, camp or caregivers that we don’t have other ideas of what we can send in for lunches?
You might wonder how he communicates then, if he can’t speak, in this silent world of apraxia. This is a long story in itself. I’ll try to keep it to the Coles-Notes version. Owen started working with a speech pathologist since the age of 2. Over the course of his first 9 years, he worked with 5 separate agencies who coordinated ABA/IBI therapies with him and as a result, he has had as many, if not more speech paths along the way. Then you add 4 schools that he has attended in two different provinces, each of which had their own speech paths assigned to Owen. When you combine all of those elements together, what you come up with is a shit-pile of experts who all have different ideas and different budgets. How it has affected Owen, in my opinion, is this. Owen has given up learning how to communicate in a ‘typical’ way, even for a not-neuro-typical person. He has tried every app known to man on his iPad that can speak for him (Proloquo2go, TouchChat, etc.). He has learned a handful of adapted signs, but lacks the motor processing to really learn real ASL. We have used PECS (Picture Exchange Communication System) and it works well enough within specific activities or environments (like school for example). Just as he was on the cusp of enjoying or understanding a new strategy for communication, the school year would change, or we moved to a new location, or the funding for therapy would dry up or a school board would decide they would only fund and/or support the use of a specific app, and he would have to learn something new. I think he gave up.
Owen uses a language of his own.
There is the hard thump of the palm of his hand on the table top when he wants my attention, or a refill of his water glass. There is the kick of his heel on the rung of his kitchen chair when he’s angry because he feels like he’s being ignored. There is the morning wake-up slamming of the door to tell you that he’s up and expects you to serve him breakfast. There is the whistle when he’s really irritated and it’s usually because Will is stealing his food or being too loud. There are the hard, guttural growls when he’s distracted watching his iPad videos and is really into what he’s seeing. There is the high pitched slide whistle sound when he’s super excited about something. Then there is the giggle. That giggle melts hearts and makes me want to give this kid the world and better resources so he can ask for it all.
I talk a lot about how this life with my boys is living in hyper-vigilance and I realize that it’s also because I am always on alert for the signs that come from sounds or looks from Owen. You have to be watching him to know he needs you because he doesn’t come to you. He can’t yell out “Hey Mom! I think I’m going to throw up” and he can’t yell out “Will just stole my iPad!”. I have to constantly watch for those things so I can come to his rescue.
But the beautiful gift that comes from Owen’s silent world of apraxia is our communication through those blues. We share such deep moments with our eyes. I have entire conversations with him through our stares and I get the nods at the end of them, when he tells me “you hear me Mom, I know you get it”. We have wept together while staring at each other and I know he knows I feel his pain. We share secrets and our own version of eye-rolls from across a room when in the presence of someone who is annoying us both. Those eyes speak volumes and tie us together, just as they did in those first moments with him in the hospital.
Those eyes tell me, “you’re doing good Mom. I love you. Keep going for me.”
I’m trying my best to pay it forward by dealing hope and sharing stories & tips on caregiving and how to survive hard things. I blog a lot about single parenting my adult twin sons who both have autism, and the challenges we face in surviving the everyday challenges and planning for a future full of unknowns.
May that we could all be loved, and understood, as well as this. You are doing this right, even when it’s hard and thankless. xo
Deb – that is the nicest comment, thank you.