If this is getting tedious, I do apologize. However, it does serve to illustrate that going through this process is laborious and requires perseverance. At the end of Part 2, we had been referred to another department at Sick Kids Hospital. This is where the real work began….
Just so you know – when you pursue any kind of assessment, there are long questionnaires that need to be completed. So – after an initial consultation with the doctor, there was homework for Left Brain and I (mostly me) to complete. Then a long interview while the doctors looked over the questionnaire and clarified any of their questions. Then began the appointments with Henry.
He was seen at least 4 times for over an hour each. Henry dreaded these appointments – although he was used to his usual speech therapy appointment every week, these dates were an exercise in frustration for both of us. I came armed with toys and treats to get (and keep) him there. One appointment, he became agitated because I had forgotten his Woody doll in the car (which he dragged around for about 3 years). I didn’t try to talk him out of it – I immediately got my coat and boots back on (this was the dead of winter) and walked back to my car where it was parked a fair distance away to retrieve his friend.
So – after all of these appointments, finally, the diagnosis. Henry’s teacher came with us (Left Brain and I) so that she could understand his difficulties as well. I reasoned that the whole team should be there. And then the terrible, horrible news… Because up until that point, there is still the dream of unlimited possibilities….
Autism Spectrum Disorder (ASD)… Finally – now we know. I am numb, but manage to keep it together during the appointment. Outside, Brian and I talk for a few minutes. He’s trying to console me – he says, “This is good – now we know what we’re dealing with.” He’s right of course, but he’s also wrong…. Men always want to solve the problem – in his mind, at this point, the problem is halfway solved. But I’m heartbroken – and scared; and worried.
Afterwards, I sit in my car and sob. I need to get it out – just for now. I do not give myself the time to grieve – yet. That comes many years later. Then I do what I always do with a problem – take it step by step. So, I drive to the nearest bookstore and pick up some books on the subject. Brian’s concerns at this point are different. He goes to his office and checks on the trust that we set up for Henry at birth (for his education at that point), and tries to ascertain whether we will have enough money to support him for the rest of his life! Many of our decisions after this point are predicated on whether or not there will be enough for Henry, if he needs it…..
And so the real work begins…