I got home from work on Friday, and as per my usual routine, I stopped to get the mail. Flipping through the envelopes one caught my eye and I opened it to find my son's "report card" from his Social Skills group at the Miseracordia hospital.
Backing up a bit, upon getting our diagnosis, we were put on a list for this Social Skills group. There was an 18 month waiting list. Talk about scarcity of essential resources. We got the call 11 weeks ago and although he was reluctant, I didn't let him wiggle out of it and he just finished the program. It was once a week with a group of adolescents, parents, social workers and a psychiatrist. The program was aimed at assessing where their areas of deficiency were in terms of social interactions and skills and then teaching to those specific areas.
I read the final report as I sat at my kitchen island thinking about the journey over the last year and a half. About the incredible progress we have already made. About half way down the page was the following statement " he took a real leadership role in participating in the group..... in fact the multidisciplinary team found very little expression of Asperger symptoms... mild OCD tendancies remain and some ADHD as well..... very pleased with his progress".
To be honest my first reaction was resistance. I felt really threatened. And it took me a minute to understand why. My first reaction was that they were trying to tell me he had been misdiagnosed. That once again we were hanging in the wind. And then I thought, that's not it at all. 18 months ago I sat in a multidisciplinary team meeting where they told me without a doubt that my son has High Functioning Autism, Asperger's. When I asked if there could be some mistake, they said "listen, if we had missed him in one area we would have picked him up on the other eight! " We were diagnosed at the Autism Centre for Excellence in Alberta.
So what happened? Guess what. The diet works. The fourty pills a day helped. To all the professionals that told me I had my head up my .......this is for you. My son is one piece in the puzzle. Once single piece. But I have proof. And he is dressing up for Halloween, asking if he can help me in the kitchen, asking if I am tired after work!!!! He is making huge progress and he can see it himself.
The last year and a half have been like a science fiction episode! We have made the jump to light speed and the progress has been at a speed that has outstripped anything we did in his first 11 years. And more than that, he is happy for the first time in his life. His brother has become his friend, he is doing amazing at school ( honours in everything you can get honours in) and he understands himself. He believes in himself. His favorite character is Sheldon on "The Big Bang Theory". He is Sheldon on the Big Bang Theory! My hat is off to the television industry for helping us bring humour and awareness to this issue. It is so helpful when ordinary people can have an attachment and compassion for a character like Sheldon. It translates in a very real way into my son's life.
We have a long way to go but today's message is don't give up. Try whatever you feel you have to try. The professionals don't have all the answers, so don't give up when they tell you there is nothing they can do. I have a medical background and I am telling you we do not know everything. We know as much of the puzzle as we can see today. And sometimes the more we uncover, we realize that the white piece we thought was snow was actually part of a big cloud, or a daisy petal. Sometimes even when we are sure we are right time reveals we have only had a limited perspective. Parents are the most persistant advocates these kids could ever need. Keep sharing your journeys, so that together we can piece together what works and offer hope and help to each other. Someday all of those pieces will fit together and we will be able to back up and see what this complicated picture really looks like. We will need to with diagnosis rates at 1 in 90. We will need to understand this soon because we are going to be innundated with cases. Autism is rapidly becoming a norm, and we need to know why.
Question antibiotic use for every menial childhood infection. We know we are over using these drugs. We want instant results, but at what cost? As a dentist we have almost eliminated antibiotic use except in situations except severe infections and limited coverage for Heart and prosthetic valves and joints. We do not give antibiotics for every little issue. We cannot continue to ignore the evidence that is mounting that we were doing more harm than good. If we continue as we have, soon the bugs that we need to fight will be resistant to the drugs that we have and then we really will be in trouble. And if we overuse them in kids, we may, and I say may at this point be tipping the scales towards more cases of autism by changing the bacterial colonies that inhabit our kids digestive systems. We are complex organisms and we need to act responsibly with our bodies. If not, it will be like introducing rabbits to New Zealand, an island with no natural predators. Our actions all have consequences and sometimes we cannot see the outcome until we are overrun with rabbits. We need to think ahead.
My reaction bothered me for several reasons. At first I thought Munchaussen Syndrome. Do I need him to have Autism? Shake my head. I think it was again about feeling invalidated. I didn't want to read one more person telling me I had it wrong. It has been a long fight to get here. And I realize in the same instant that I don't have to fight anymore. I know where we have been, and I know where we are going. No one can tell me what this path has been because no one has walked it but me and my family. I am getting passed the anger and the frustration, and perhaps that is the first stone on the way to acceptance.
Instead of resistance I am going to choose to feel joy and feel proud of how hard he has worked and how far he has come. My boys are my hero's every single day. Today was just a day to celebrate!!!!!!!!!!!!
In love and light,
Kathryn
Backing up a bit, upon getting our diagnosis, we were put on a list for this Social Skills group. There was an 18 month waiting list. Talk about scarcity of essential resources. We got the call 11 weeks ago and although he was reluctant, I didn't let him wiggle out of it and he just finished the program. It was once a week with a group of adolescents, parents, social workers and a psychiatrist. The program was aimed at assessing where their areas of deficiency were in terms of social interactions and skills and then teaching to those specific areas.
I read the final report as I sat at my kitchen island thinking about the journey over the last year and a half. About the incredible progress we have already made. About half way down the page was the following statement " he took a real leadership role in participating in the group..... in fact the multidisciplinary team found very little expression of Asperger symptoms... mild OCD tendancies remain and some ADHD as well..... very pleased with his progress".
To be honest my first reaction was resistance. I felt really threatened. And it took me a minute to understand why. My first reaction was that they were trying to tell me he had been misdiagnosed. That once again we were hanging in the wind. And then I thought, that's not it at all. 18 months ago I sat in a multidisciplinary team meeting where they told me without a doubt that my son has High Functioning Autism, Asperger's. When I asked if there could be some mistake, they said "listen, if we had missed him in one area we would have picked him up on the other eight! " We were diagnosed at the Autism Centre for Excellence in Alberta.
So what happened? Guess what. The diet works. The fourty pills a day helped. To all the professionals that told me I had my head up my .......this is for you. My son is one piece in the puzzle. Once single piece. But I have proof. And he is dressing up for Halloween, asking if he can help me in the kitchen, asking if I am tired after work!!!! He is making huge progress and he can see it himself.
The last year and a half have been like a science fiction episode! We have made the jump to light speed and the progress has been at a speed that has outstripped anything we did in his first 11 years. And more than that, he is happy for the first time in his life. His brother has become his friend, he is doing amazing at school ( honours in everything you can get honours in) and he understands himself. He believes in himself. His favorite character is Sheldon on "The Big Bang Theory". He is Sheldon on the Big Bang Theory! My hat is off to the television industry for helping us bring humour and awareness to this issue. It is so helpful when ordinary people can have an attachment and compassion for a character like Sheldon. It translates in a very real way into my son's life.
We have a long way to go but today's message is don't give up. Try whatever you feel you have to try. The professionals don't have all the answers, so don't give up when they tell you there is nothing they can do. I have a medical background and I am telling you we do not know everything. We know as much of the puzzle as we can see today. And sometimes the more we uncover, we realize that the white piece we thought was snow was actually part of a big cloud, or a daisy petal. Sometimes even when we are sure we are right time reveals we have only had a limited perspective. Parents are the most persistant advocates these kids could ever need. Keep sharing your journeys, so that together we can piece together what works and offer hope and help to each other. Someday all of those pieces will fit together and we will be able to back up and see what this complicated picture really looks like. We will need to with diagnosis rates at 1 in 90. We will need to understand this soon because we are going to be innundated with cases. Autism is rapidly becoming a norm, and we need to know why.
Question antibiotic use for every menial childhood infection. We know we are over using these drugs. We want instant results, but at what cost? As a dentist we have almost eliminated antibiotic use except in situations except severe infections and limited coverage for Heart and prosthetic valves and joints. We do not give antibiotics for every little issue. We cannot continue to ignore the evidence that is mounting that we were doing more harm than good. If we continue as we have, soon the bugs that we need to fight will be resistant to the drugs that we have and then we really will be in trouble. And if we overuse them in kids, we may, and I say may at this point be tipping the scales towards more cases of autism by changing the bacterial colonies that inhabit our kids digestive systems. We are complex organisms and we need to act responsibly with our bodies. If not, it will be like introducing rabbits to New Zealand, an island with no natural predators. Our actions all have consequences and sometimes we cannot see the outcome until we are overrun with rabbits. We need to think ahead.
My reaction bothered me for several reasons. At first I thought Munchaussen Syndrome. Do I need him to have Autism? Shake my head. I think it was again about feeling invalidated. I didn't want to read one more person telling me I had it wrong. It has been a long fight to get here. And I realize in the same instant that I don't have to fight anymore. I know where we have been, and I know where we are going. No one can tell me what this path has been because no one has walked it but me and my family. I am getting passed the anger and the frustration, and perhaps that is the first stone on the way to acceptance.
Instead of resistance I am going to choose to feel joy and feel proud of how hard he has worked and how far he has come. My boys are my hero's every single day. Today was just a day to celebrate!!!!!!!!!!!!
In love and light,
Kathryn
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