I have to vent my energy around this today. Normally I try to see the upside of most situations. This morning I am so angry I could scream. Yesterday, the third person in my office had their child officially diagnosed with Autism. And for the third time, I heard exactly the same scenario.
"I am very sorry to inform you that the completion of your testing has revealed to us that your child has Autism. Here is our Welcome to Autism package and at the end you will find a lovely reading list. Good luck!"
That's it. Welcome to the club. No assistance. No here is where you go for services, let's get you signed right up! After three years of trying to get this diagnosis I am sure you are anxious to get started!
When she told me, it was like a PTS ( post traumatic stress ) moment. I wanted to escape. I actually sat and cried in the car on my way home. How could this be what happens to people in a province with a Center of Excellence for Autism? How hard could this be? I don't diagnose cavities and then send people out the door saying "good luck! Hope those don't get too bad for you!" NO! We tell you what types of fillings you can have, what they cost, how long it will take to treat you and we book you. That is called diagnosis and treatment.
We seem to have an exceptional diagnostic arm ( once you actually find your way in- which in our case took 8 years of digging and begging) and an amputated limb on the other side. No treatment other than what you can cobble together.
In January at the Autism conference in Edmonton there was a parent conference on the last day. Experienced parents who stayed behind to share their stories and help the rest of us figure some of this out. I stood up at the end, and I couldn't help it. Half way through my question I was standing exposed in the middle of the room feeling like a total idiot, bawling, so emotional I could hardly choke out the words. Where do I go from here? How do I find help? Five parents in the room told me that I was not alone. One set of parents had non-verbal twins. They too were told the same story and given the same damn reading list.
There is an Autism Follow up clinic. The name sounded promising. When we called they said, no, this is actually a misnomer. We don't follow you up, we are just here in case you have a specific question. Actually, I have a thousand questions. My child has just been diagnosed with Autism!!!!!!!!!!!!!!!!!!!!!! The family with non verbal twins told me that it takes the average family two years to sort things out, find a connection, funding and services on their own or with help from other Autism families. What about two parent working familiies? Who sorts all of this out and does all the research to figure out where to start?
Sometimes these moments bring incredible clarity for me. Anger and chaos roiling in my gut may just birth something worthwhile. This cannot continue for the families and children of Alberta. We need to create some sort of safety net as the numbers of these children being diagnosed is escalating. These families need help and more than that, they need hope.
In love and light,
Kathryn
"I am very sorry to inform you that the completion of your testing has revealed to us that your child has Autism. Here is our Welcome to Autism package and at the end you will find a lovely reading list. Good luck!"
That's it. Welcome to the club. No assistance. No here is where you go for services, let's get you signed right up! After three years of trying to get this diagnosis I am sure you are anxious to get started!
When she told me, it was like a PTS ( post traumatic stress ) moment. I wanted to escape. I actually sat and cried in the car on my way home. How could this be what happens to people in a province with a Center of Excellence for Autism? How hard could this be? I don't diagnose cavities and then send people out the door saying "good luck! Hope those don't get too bad for you!" NO! We tell you what types of fillings you can have, what they cost, how long it will take to treat you and we book you. That is called diagnosis and treatment.
We seem to have an exceptional diagnostic arm ( once you actually find your way in- which in our case took 8 years of digging and begging) and an amputated limb on the other side. No treatment other than what you can cobble together.
In January at the Autism conference in Edmonton there was a parent conference on the last day. Experienced parents who stayed behind to share their stories and help the rest of us figure some of this out. I stood up at the end, and I couldn't help it. Half way through my question I was standing exposed in the middle of the room feeling like a total idiot, bawling, so emotional I could hardly choke out the words. Where do I go from here? How do I find help? Five parents in the room told me that I was not alone. One set of parents had non-verbal twins. They too were told the same story and given the same damn reading list.
There is an Autism Follow up clinic. The name sounded promising. When we called they said, no, this is actually a misnomer. We don't follow you up, we are just here in case you have a specific question. Actually, I have a thousand questions. My child has just been diagnosed with Autism!!!!!!!!!!!!!!!!!!!!!! The family with non verbal twins told me that it takes the average family two years to sort things out, find a connection, funding and services on their own or with help from other Autism families. What about two parent working familiies? Who sorts all of this out and does all the research to figure out where to start?
Sometimes these moments bring incredible clarity for me. Anger and chaos roiling in my gut may just birth something worthwhile. This cannot continue for the families and children of Alberta. We need to create some sort of safety net as the numbers of these children being diagnosed is escalating. These families need help and more than that, they need hope.
In love and light,
Kathryn
Wow, I'm sorry to hear that this was such a bad experience for you! From the time I first saw our family doctor to the time he went through assessments and we received a diagnosis was 8 months.... from there more help came. my youngest was then fast-tracked into an assessment as well - and I've received follow up calls from that dr as well. I was put through parent classes as part of the program my son was in, I was given all the forms and letters to apply for FSCD and was told if I needed help filling them out, to let them know. Then the worker I have through FSCD told me where all the services were and what courses/ programs would be good to enroll it. I've been provided the names of private OT's to help my son who is not on the spectrum but has severe sensory integration issues... I feel incredibly fortunate to live in a place where all this help is available to us. Last Sunday we did the Cycle for Autism and I spoke to the most wonderful lady who works at ASEA (Autism society for Edmonton Area) and she gave me a number of new resources and said to call her anytime to ask questions as to what is out there for us. They are running a summer playgroup this year.... I found out about the best device (one that the Edmonton Police Service endorses, I believe) to keep my youngest safe. I will call her, as I need to, when I'm looking for more. My son has been in a sports program with others just like him at the University - and that has done more for his self esteem than anything.
ReplyDeleteI did not mean to rant - I'm just surprised that after what our experience has been, that there are people being left with nothing! And suddenly I feel a little like an expert. We only received our first diagnosis a year and a half ago - and since then both of his brothers have also been diagnosed with special needs. It boggles my mind that it can take 8 years to figure it out when I managed to get all 3 children seen and diagnosed within a year and a half. My mental health suffered, of course, but I'm coming out the other side and feeling better and stronger than I have in a long time. There is a lot out there that we can tap into and I think it's fantastic.
Try living outside the city. My son (now 3.5 yrs) was diagnosed about 12 months ago. (Though if anyone would have listened to me and our Pediatrician, he would have been diagnosed by 18 months). We qualified for FSCD Specialised Services. It took 6 months to find an FSCD Service Provider willing to come an hour out of Edmonton, even though FSCD swore that the list of providers that they gave me did come out here. Most Service Providers told me that they did not come out of the Capital Region and that they would not help us set up a home program if we came into the city for services. It was just a flat out NO and FSCD was little help. We have found a great Service Provider but they are having difficulty finding an aide to come in-home to work with our son for a few hours 4 days a week. Our OT is my new best friend with the SLP a close second. The advice and support that they have provided in the last 5 months have allowed our son to make some incredible progress.
ReplyDeleteOur school district is ill-equipped to meet our needs. We are looking to sell and move into Edmonton or St Albert before our twins start school. We started their Headstart preschool program this year and it was obvious that the school is well-intentioned but the best that we can expect from them is that they will 'make-do'.
I feel so unqualified and it scares me to realise that ultimately, I am the one in charge of deciding what programs and therapies to try. Especially, when I don't even know what the options are! It is getting better and we are starting to see progress, so I am hopeful.
Valerie