For a long time now people have been throwing around words about Josh like ‘Autism’ or ‘Austisic spectrum’. I would ask repeatedly why that was, what they were looking at, what signs and markers they saw and I felt repeatedly unheard, or at the very least I felt like I was just the ‘mother in denial’. However, I don’t believe I am in denial. I know the deficits that Josh suffers with, I see them every day, I live with them and daily work to improve them. There is no room for denial in our world. However, do I sit by and say or do nothing while they label my son with something he doesn’t have? I am his advocate am I not? So at what point do I advocate? and How?
In March I went to yet another appointment where I felt unheard and where my words were twisted and used against me (or Josh really). I left that appointment upset and frustrated and more determined than ever to get to the truth, to face the truth. I had to do some soul searching, was I in fact in denial? Autism is a very serious and scary illness and maybe I was just afraid to deal with any more health issues with Josh? I did research, I read study after study on behavioural developmental delays, speech delays. I did research on the effects of multiple general anaesthetics, on the medications that he has been on, and on the effect of pre-maturity on the development of the brain. I collected data, I video taped Josh in his natural environment, away from doctors and tension. Basically I worked hard, and often late into the night, to get to the truth.
This is what I learned. I am NOT crazy, delusional or in denial. If Josh had autism I would cope with it just as I have coped with his heart issues and stroke issues. We would get him the help he needed and we would enjoy every minute with him. We would without doubt or hesitation love him regardless of any diagnosis. However, I will not stand by and allow someone to label him with something he doesn’t have. He has enough to fight through in life without an added label that is false. As his mother it’s my job to be his advocate. It is my role to get him the help he needs yes, but it’s also my job to make sure that he isn’t being forever tagged with something that he doesn’t have.
I phoned my nurse at the Stroke clinic at Sick Kids hospital and spoke at length with her about my concerns regarding Josh’s development as well as my worries about a false diagnosis. This nurse is amazing, she spent close to an hour on the phone with me and discussing all aspects of my worries. She fit me into a clinic visit long before we were due for one and she called in favours to make sure a child psychologist was on hand for the appointment.
That appointment was today. I have to admit to being a little concerned about it, would Josh be himself or would he turn shy and nervous (as he does at Doctor appointments, naturally of course). I should never have feared, I forgot that God is just as much Joshua’s advocate as I am and let me tell you he did one hell of a job advocating today!
The doctors listened to me intently, Joshua showed no nerves, no shyness, in fact he was totally and completely himself, as he would be at home playing with Tim and I. He was involved, he chatted and communicated better than he usually does, he interacted with the doctors, played with their toys. I had a lump in my throat because this was the Josh I had so desperately wanted them to see. This Josh, the one I had bought a video camera to show them, he was there in full force. No video needed! God is awesome!
The child psychologist listened to all my concerns, I admitted that it was possible that I was in denial but that I doubted it, but that I would be willing to hear her opinion. She smiled and said…’the last thing that I would think of when looking at that little boy is autism.’. She then listed off all the reasons she felt that it was a case of miss diagnosis (he hadn’t actually been diagnosed yet but you know what I mean). She explained that in a rush to catch things like autism early so as to get early intervention, they too often catch kids up in a net. Then she said what I had been needing to hear all along without realizing it… she said ‘you are right to listen to your gut, I believe he has some developmental delays (of which I fully agree with her) but those are due to his health issues, his stroke, the medications, the amount of time he has spent on his back sedated in hosptial’. She said everything I had been saying, but she was an expert! I had been heard and I knew it. Even if she had agreed that it could be autism, there was something so refreshing about being heard, to have someone sit and listen, repeat my concerns and then in a matter of fact way state their opinion. Of course I also really liked that her opinion was in line with my own. 🙂
There are concerns, of that there is no question but the reality is that things are coming along as expected for him and they believe he will catch up quickly. There is weakness on his right side, a side effect of the stroke, it can be treated and fixed with physio. There are concerns with his speech, of which he is improving in leaps and bounds. So, does Joshua have delays? Yes. am I in denial about that? No and finally someone who is an expert is in agreement with me on that.
Let me be clear. I have no pre-conceived ideas about Autism, it’s a devastating disease for the patient as well as the family but it doesn’t need to be as dire as everyone says. Life is possible with autism, although most people think of rain man when they hear that word. No, I am without doubts or hesitation clear that if Josh had been properly diagnosed with this dreadful disease I would have worked through it, loving him regardless. I just didn’t want them to judge him without the full information, without seeing how his is outside of their offices, without making allowances for the life he has led to this point, the setbacks he has overcome. This little boy is a miracle and the few delays he has are nothing compared to what he should have. Neurology, Stroke team and the children’s psychology department are pleased with his progress, as am I.
The biggest thing I learned today? That God shows up, even when we have forgotten to ask him.