It will be six months tomorrow.
For half of a year, my son has officially been autistic. So much and so little has changed in six months.
I can still so clearly remember the day of the diagnosis. I remember getting back into the van and going out for lunch before heading home. I remember how hard I had to work to hold it together and how shocked I was about how shocked I was.
We picked up a few groceries since we were in the city and I wanted to buy my son a toy, a treat, something. I don’t know why I needed to do this so badly, it wouldn’t change anything. Maybe it was because I felt so helpless as a mother right then and that was all I felt like I could do.
The ride home was quiet. I was so ashamed of myself for having to struggle not to cry. What kind of terrible mother gets so upset about something like this?!?!
He didn’t have a terminal disease. He didn’t have a degenerative condition. It was just autism and it could be so much worse. And wasn’t I expecting this? I knew this diagnosis was coming.
I pulled the papers out of my purse and read them again just to be sure that I heard her correctly.
“….a diagnosis of Autism Spectrum Disorder is appropriate…”
I just couldn’t figure out why I was so upset; all that I knew was that I was.
We pulled into our yard and walked into the house. My dear friend who was watching the girls was kind and sensitive enough not to ask anything. I’m pretty sure that she could read it all over my face anyway. She knew my son better than most people. From day one, she has been his favourite “church aunty”. I asked how the girls behaved and she told me some of the silly things they had done. I thanked her again for her help. She hugged me and left.
The rest of the day went just like any other. I put away the groceries, made supper, the kids had baths and went to bed.
The next day came and we knew it was time to start moving ahead with things. I called Autism Services and set up a home visit. I started looking into some of the equipment that I thought may be helpful for him. Weighted blankets and toys. A pea pod. Maybe even a service dog. My boy is a runner. A highly non-verbal wanderer. He has gotten away on us twice and those have been the most terrifying moments of my life. There are dogs trained to help kids like that.
My husband came home after work, and again the evening went like any other. Supper, play, bedtime.
Now I was finally ready to talk about things. I confessed to him how surprised I was at how hard I was taking this and how guilty that made me feel. We talked about how to go about telling people. Should we tell people? This isn’t the kind of thing you announce on facebook. I had already told my mom the previous day and my friend who had been watching the girls called earlier and we talked about it then.
When I say we didn’t know whether or not we should tell people, it had nothing to do with keeping things secret. We were more concerned with him being seen by others as just a label instead of himself. We decided that as people asked (some of our closer friends knew that we were going through this process) we would tell them and just let the word get around as needed. No sweeping declaration, no vow of silence.
The next few weeks came and went. During this whole time, my son and I had been making weekly trips to the center for his group therapy sessions. I found my greatest comfort in these times. There were two other kids in the session with him; a little boy accompanied by his mother and a little girl accompanied by her grandmother. The other boy had been diagnosed months earlier and the little girl was still waiting for her assessment.
During these session, we caregivers sat in an observation room and were able to visit. I told the ladies that he had been diagnosed and there was just an understanding. No pitying looks or insensitive questions. I admitted to them how I had been feeling and that I was going through a period of mourning.
The grandmother seemed a little taken back by that, but the mother understood. Not mourning that my son had some terrible disease or anything, but mourning for the future that he very likely will never have. When our children are born we have certain expectations (whether we realize it or not). They will graduate high school, be successful in their career, fall in love, marry, have a family of their own, etc.
These are things that my son may never experience. His education I’m less uncertain about. I know that he’s smart. I also know that his educational process will look different that most kids’.
The other mother talked about her own mourning process and how just when she thinks that she’s through it, another wave of sadness often sweeps over her. Strangely, I found comfort in that. In knowing that I’m not just some crazy and selfish mom, and that someone else understood. She provided me with helpful information about who to connect with, funding available, what else to expect as a mom. I’ll always be grateful for her help that day.
I have since come to realize that a large part of my difficulty with getting the diagnosis is that even though we were expecting it, there was always this glimmer that maybe it was something else. Something easily changed so that my boy wouldn’t have a lifetime of struggles. That glimmer is gone now.
Throughout the past six months, my son has made some great strides. He is more able to ask for things that he wants, or be able to say “no thank you” to things he doesn’t want instead of just reacting with fear or anger.
A month ago I took him to the doctor to be checked. The standard procedure with him has been that I sit him on my lap, hold his forehead with one hand, his chin with the other while the doctor gags him with the tongue depressor to get him to open his mouth so he can check his throat. This time, my boy willingly opened wide and said “aaaaahhhh”. He also happily let the doc check his glands and lungs.
I don’t know who was more amazed, the doctor or me. Okay, I thought, if he’s this good with the doctor then maybe he’s ready for the dentist.
Last week I took him in for his first dentist appointment. I explained to the hygienist beforehand that he is autistic and I didn’t know how he would react. We agreed that we’d be more concerned with checking for cavities and if he allowed her to do a cleaning, great. If not we’d try again another time.
I brought him in and he sat happily in the waiting area with no fear or anxiety. Our hygienist approached him and introduced herself. My son looked at her and introduced himself! Then motioned to me and said, “And this is mom.”
What. Just. Happened???
He has NEVER done that before! Every female within earshot “awwwww-ed” and I grinned from ear to ear.
He does that. He has those days when he just amazes me with his progress. He also has days when it feels like we’re going backwards. Those days come less often, but they are hard. Remember when I said I had taken him into the doctor? One of the hardest things about the communication issues that he has is that when he is sick, he can’t tell me. I can see signs like a runny nose, fever, etc. What I can’t see is an owie tummy, a sore throat or a headache. Those moments shatter my heart!
A few nights ago he woke around midnight, highly agitated. I gave him a hug, but it didn’t help. I tried to sing his favourite song and read a story. Nothing but more agitation. I asked him if he was feeling sick but his response was, “feeling sick”. I asked him if he’d had a bad dream to which he replied, “bad dream”.
The problem with echolalia is that it’s difficult to decipher if he’s telling me what he needs, or just repeating. I tried everything I could think of and fought the urge to just sit down and cry with him. Forty five minutes later I got him a drink of water which he chugged back like he’d been wandering The Sahara. I refilled the newly emptied cup, he took it and marched happily back to bed.
I was relieved that he was settled, but bewildered that he was unable to tell me that he was thirsty because that’s something he has been able to say or sign for quite some time now.
My choices are to let the frustration get me down, or just keep moving forward. Some days sinking into despair looks appealing, but that doesn’t give my boy what he needs, so forward we go.
We continue using his PECS sheets and some sign language. He’s really focused on simple addition and reading so I am riding that wave for as far as he’ll let me. He loves the Leap Frog cartoons, Super Simple Songs on YouTube and music and learns so much from those things.
We live in a wonderful community that embraces him beautifully. His playschool teachers are amazing people who don’t just ignore him, but don’t try to force him to be someone he is not. His daycare workers are great and just let him be himself but don’t let him use his diagnosis to get away with bad behaviour.
My oldest daughter amazes me constantly in her patience with him and her understanding that sometimes he just needs mommy’s attention and that she’ll have to wait. I know that God has big things in store for this girl that He has just filled to the brim with compassion and love. I try to take her on outings one on one as often as I can because I never want her to feel ignored.
We continue to navigate this new territory unsure of what is ahead, but fully confident of Who is in control. Thank you, Lord, that you go with us every step of the way!