It’s the kind of thing you never really stop examining. At least not for me. Not yet.
Should I have eaten more of this food during my pregnancy? Less of that one? Did I forget to take my prenatal vitamin one day? Maybe I was too stressed. Maybe I’m just a bad person and God decided to punish me for it through my child. The questions on this list are endless.
Of course I KNOW that the answer to all of these questions is a resounding “NO”. My head knows that. My heart? Well, that depends on the day.
My son is not a punishment and never has been. He loves to giggle and be tickled and sing and swing in the back yard for hours and hours. Just like most every kid. My son also loves to arrange his vast collection of balls a hundred different ways a hundred times a day. By size, by colour, by softness, by type, in order of importance to him personally. In a straight line, in a circle, in a triangle, in an octagon. Don’t try to take one out or trade two around. He’ll know. Even if he wasn’t in the room, he’ll know instantly.
My son also loves to quote “Max and Ruby”. In fact, he uses it often to communicate with me. He will bring me a blanket and when he’s given up on me trying to figure out what he wants he’ll say “super bunny”. Ooooohhhh, you want a cape! Got it! For those of you who know my little boy personally, if he’s ever asked you to do something like this for him, count yourself special. Not just anybody makes the cut for this kind of intimacy with him. It means he loves you and trusts you to understand him and not get frustrated with him or treat him like he’s stupid. So many do. They don’t mean to (always), but they talk about him like he’s not in the room. He might not join the conversation like you expect him to, but he’s there, and he’s taking it in. He takes in so much more than people give him credit for.
It’s a warm August day and we are walking to the “check a mail” as my kids call it. We do this most days because it’s close, and sometimes the only excuse we have to leave the house/yard. Flyers, bills, the usual, a letter from the Center. Hmmm. They have been working with my son for almost a year now. They are great! What are they sending me this time. It’s pretty thin so it can’t be a report. I get the kids back into the stroller and tear open the envelop. I don’t have patience to wait until I get home to see what this is.
His assessment has been booked. THE assessment. The one I’ve been waiting for and dreading for the last 4 ½ years. I don’t want him labeled, but the label opens the doors for help, for funding, for equipment. And maybe, just maybe, the label will stop well meaning people from diagnosing him themselves.
I have a month to prepare for this. Not that we have to do anything. There’s no studying or training or practice. But I have to prepare my heart to hear what it’s known all along.
The assessment is broken into 2 appointments. We meet the Pediatrician, the Psychologist and the Psychometric (that was a brand new word for me). The Social Worker, Speech Language Pathologist (SLP) and Occupational Therapist (OT) are already well known to us. They have been working with my boy for a year and he loves them and they love him and for that I love them too!
Today it’s just me and my boy. He’s playing in the corner with some of the toys he’s become familiar with there while I answer questions.
So many questions.
Many of them are the same question just asked in a different way. It’s a little annoying, but I get it. They need to be sure that they’re getting the truth out of me. Not that I would intentionally lie, but I think my mama bear nature is to protect my cub and maybe I have glossed over a few things without even realizing it. I had made up my mind prior to this to be completely honest about everything. I have spent the last month in prayer for God to give me the strength to be honest. It shouldn’t be that hard, but what if they judge me as a mother? What if in my honesty they discover the true cause of his whatever is my faulty parenting? It’s hard to be vulnerable.
For a moment I step outside myself. My mouth is moving. Words are coming out of it. I’m making eye contact and nodding at comments made by our “team”.
I’m not hearing a word.
I’m struck with the fact that my little 4 year old requires a “team” to help him learn how to “do” life. It’s not fair, God. I know we’ve had this discussion a million times, but why does life have to be so hard for someone so small and sweet?
I snap back to reality. We’re moving to the next room. He goes into one room with the Psychometric and I watch through a window. I’m listening and filling out paperwork.
She’s asking him to copy her, but she’s not giving him enough time. No! You have to ask him like this. Just give him one more minute, he’ll get it. I know he will!
This is one of the most agonizing steps in the process! A-ha! That’s why the parent has to stay in another room. I get it now.
This part is done and the Psychometric is now one of my least favourite people. It’s nothing personal, she just made him get frustrated. Put those claws away, mama bear!
More questions, more answers, more structured and observed play.
We’re done. Day one is done.
We load back into the van and head out for lunch. He’s worked hard for that Happy Meal.
A week and a half have passed and something springs back to my mind, “if at all possible, we prefer to have both parents present for the final assessment”. It’s an easy text into his boss for my husband to be able to get the day off.
I try to tell my husband what to expect, but I’m not entirely sure myself. I introduce him to the “Team”. The Psychometric isn’t here this time. Good, I haven’t quite forgiven her for doing her job last time. We exchange niceties. Yes, roads were excellent. It is a lovely fall we’re having. Nope, no trouble getting the time off. We’re all friends now – let’s get on with it.
We go to the gym. They let him swing and climb and giggle. When he giggles and looks you straight in the eye he melts your heart! One of the million things I love about this boy is that there is not an insincere bone in his body!
The OT knows his favourite songs and games and he is having a blast. The SLP has this way of getting him excited about language and she pushes him to work hard, but he has so much fun that it doesn’t feel like work.
Now it’s time to go play with the Psychologist again. We try some pretend play but he really doesn’t care that the “baby is sleepy”. Throw a birthday party for the doll? Ok, now she’s speaking his language! After a small snack break he perks back up and now it’s time to see the Pediatrician. He’s being about as cooperative as he ever is with doctors, but she is patient and kind so he cuts her a little slack.
“Ok, all done. Why don’t you take him to whichever waiting room is his favourite to go play in while we all confer.” says our Social Worker. That’s easy – to the slides!
I watch him play while trying to hold my heart together. I know that this is the last time he’ll be playing as just himself. Any minute they’ll come get us and from that moment on he’ll be The Autistic Boy, or whatever diagnosis they give him. I’m trying to pray silently, but the words aren’t coming. Romans 8:26 & 27 comes to mind, “In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us through wordless groans.”. Thank you, God, for knowing what I need even when I don’t!
My husband and I don’t say a whole lot. Not that we’re upset with each other or anything, but there doesn’t seem to be words for this. This is uncharted territory for both of us. What is the waiting room etiquette when waiting for your life to change?
I know that nothing will really change. We’ll still keep doing what we’re doing and our boy will still be who he is; but it still feels like we’re about to walk through a door that we can’t go back through again. I’m not trying to be dismal, just realistic. We’re both quite certain that Autism will be the diagnosis. In fact, we’d be more surprised if they told us that it wasn’t.
“Hi buddy,” the Social Worker says to my son, “having fun?” He turns to us, “Alright, we can head back to my office now.”
Part of me wants to freeze this moment before he becomes a label and just always let him be himself, part of me wants to just get this over and done with and start moving forward. My body is just on autopilot anyway, following along.
My husband and I take our seats on the comfy black leather loveseat and right then it hits me – this is why they want both parents present! Partially to get a fuller picture of our son, but mostly because they know that we need each other for support right now.
There are words coming out of mouths and we nod and “uh-huh” appropriately. The Pediatrician leans forward slightly. “Based on what we’ve observed during this process, what the OT and SLP have observed during their work with your son, and the information you two have provided us with, it is my professional opinion that a diagnoses of Autism Spectrum Disorder is appropriate.”
I think the only words I can mutter are, “oh, okay”. We have an opportunity now to ask questions. We can’t think of any right now. I’m far more surprised than I expected to be.
Everyone files out of the room except the Social Worker. We start talking about where to go from here. We discuss programs available to our son, what specialists are available to him and us. He assures us that we do not have to walk through this alone. He keeps handing us papers and we keep saying “thank you”.
We are silent as we walk out to the van. It’s now time to start our life as an Autism family.