Wednesday, 11 January 2012

The Day the Diagnosis Came

The day the diagnosis came I was a bit of a wreck. I had been preparing myself to hear it, as best I could, for close to two years. Yet, my eyes still welled up with tears as the doctor spoke and explained how she was about to formally diagnose Leo with mild autism. That was yesterday.

I have known since Leo was about 12-months-old that something wasn’t quite right. I had his twin, Eli, to constantly mark his progress, or lack thereof, and there was something about the way that Leo, as a baby, didn’t always respond to his name that made me know in my gut that something was wrong.

It has been a long, long journey to get to the formal diagnosis. I heard a lot of “he is just on his own schedule”, “he will get there” and “nothing is wrong with him” along the way. But I held fast in my suspicions that Leo, would in fact, need some extra help. Luckily, our son’s paediatrician has been an enormous help through this process. Although I am sure he regrets giving P and I his cell number (Ha!), he listened to every frantic phone call, to all of our concerns, and even made a housecall to see Leo in his own environment. He carried Leo’s file around with him for close to a year, and confessed to me that he found trying to locate the right specialist to diagnose a toddler to be a very frustrating process. So you can imagine how frustrating the process has been for Leo’s parents.

I won’t go through all the visits to the occupational therapists, the speech therapist, the tubes-in-the-ears, and the decision to have the assessment done privately, rather than through public healthcare with you, but just know that this has been a very long road. And here we are.

I went from “just knowing” that something was wrong with Leo when he was 12-months-old, to suspecting that it was autism for the past year. Every Google search I did that involved his arm flapping, his poor eye contact and his speech delay, all seemed to point me in one direction. (Side note: Doctors must hate Google, oui?) But to get someone to diagnosis a 1-year-old, or even a 2-year-old, is a difficult process. But I was determined to find out NOW what is wrong, and not wait until he is school-aged.

I gave myself yesterday to cry about it. I would just spontaneously break into tears at different points during the day. I gave myself yesterday to wallow in the fact that it sucks so bad that my son is autistic and I am powerless to just make it all better for him. I didn’t go to the hockey game last night so I could stay home, put on my pyjamas, and feel free to cry at will. I felt all the emotions you feel when you get this type of news. I felt sorry for Leo, as he is going to face some challenges in his life. Truthfully, I even felt upset for me because his challenges would mean challenges for me and I sometimes already feel overloaded with a husband who is gone a lot, and twin two-year-old boys. Then the next second, I would feel guilty for being so upset. It could always be worse. I could have been told that he was high on the autism spectrum or that he was fighting some sort of incurable disease. Then my guilt would subside, and I would feel sorry for Leo again.

Then I would feel terrible for Eli, Leo’s twin brother. While we have been on this adventure with Leo, we overlooked the fact that Eli needs a speech therapist to help with his delayed language. I am wracked with guilt that while dealing with Leo’s needs, I totally missed a huge one of Eli’s. He is currently on the wait list for a speech therapist at the Montreal Fluency Centre. I know he is only two, but if I had got him on the wait list sooner, then he would already be receiving speech therapy.

I am also feeling bad that Eli will miss out on certain activities because of his brother. But I do recognize that this is Eli’s cross to bear. He has a brother with autism. That is just the way things are. As a result, he has grown up very quickly and no longer seems like a two-year-old to me. I catch myself explaining things to him, like I would talk to an adult, and he listens quietly, nods and says “Yes, Mama.” Eli is a real sweetheart and a real help to me. He will be to his brother, too.

But, while I acknowledge my need for going through all of these emotions yesterday, I knew it had to end with going to bed last night. The difference in today from yesterday is now I know what is wrong. There is a label on it. Now I can start to find a way to help Leo. It is not going to be easy. We live in Quebec and figuring out how to access resources in a new province is hard enough, never mind doing it in a language you are not fluent in. But I will figure it out. I will try to be the best advocate I can possibly be for Leo. And, while doing that, I will try to best Mom I can be to Eli who needs me in different ways.

The doctor was quite certain that the right therapy will do wonders for Leo. She said there are no cognitive concerns with Leo. And with autism, cognitive ability will often be a factor in how well a child responds to therapy. And since a huge part of his problem is with language, once he is working with a speech therapist and can express himself, this will help very much. We will hold fast to her predictions of successful therapy and there are many reasons to be full of hope today.

I heard Leo call for me this morning and I went into his bedroom as he was waking up. I sat next to his bed and we started our morning the same way we do every morning. I said, “Good morning, Leo. Look at Mommy in the eyes and say ‘Good Morning, Mommy’.” He didn’t look at me or say good morning. I repeated myself several times but to no avail. Leo started to sing “Twinkle Twinkle Little Star” and I joined in. When we are finished, Leo yells, “Yay!” Then, just as I am about to stand up, he puts his little hand on my face, turns my face toward him, looks directly into my eyes, and says, “Mommy, again.”

I fought back tears as I sang “Twinkle Twinkle Little Star” a solid 10 more times. Like I said before, there are many reasons to be full of hope today - the day after the diagnosis.