A year into our personal journey through the autism experience, I find myself constantly confronted with the never-ending issue of cure vs. acceptance. As a non-autistic parent, it seems to be a road covered by potholes and pitfalls and the fear of misstep is ever present. I often find myself lost, afraid that I will take a wrong turn and injure or lead my child astray...or fail to bring him even near our intended destination of independance and self-advocacy.
I follow discussion groups but fear to join in, because of the anger or pain caused by a simple choice of words. The wrong language seems to cause harm to the autistic community (or is that "community with autism"?), although I don't think that the issue is intent related, in most cases. We are often scared and sometimes angry and we seek that universal language that is acceptable to all and harms none, but it does not exist.
I love my son, autistic or not, and I accept him for who he is. I would never want to change his nature, but I strive everyday to help him connect and communicate with the world around him. I need to know that if there is something I can do to make his life easier, I have at least tried. I need to know that if there is something physical that can be healed, I have at least tried. I need to know that if there is a better way to help him communicate, I have at least tried.
But, having listened to what so many adults with autism (or is that "autistic adults") have to say, I fear that my child will someday view my attempts to help as judgements of his inadequacy. This is not how I feel, and it breaks my heart that so many people feel that the community around them sends this message.
There is so much anger surrounding the issues of environment vs. genetics among the autism (and autistic) community, as well. Everyone is so busy arguing about the causes of autism and whether or not money is best spent on research or education and services. Personally, I think it is obvious that both are necessary endeavors. Researching the causes of autism does not have to end in eugenics. A better understanding of autism can be beneficial to all of us...parent, educator and autistic (person with autism) alike. And, the need for services is obvious. Learning about the causes of autism does little for existing autistics ("...") in the here and now. We need it all, it does not have to be either/or.
If we could all stop the personal attacks and realize that everyone is trying to do their best to help their loved ones or themselves (well, almost everyone), then we would waste a lot less of our energy battling each other and have more for helping our families. People need to be less worried about the semantics, and more concerned about the intent behind the words. If the intent is loving and helpful, then we should all get past the missuse of a word.
I am admittedly new to this journey, and I realize that I lack the personal perspective of autism, but I think I will save my strength for battling the school districts and insurance companies. I do not have the time or energy to fight with other travellers about the appropriate path. I welcome input and advice reading my map, but I cannot stop to indulge myself in road rage. My son and I have places to go and people to see...but I may be the only one making eye contact.
Kristie
Tuesday, November 27, 2007
Sunday, October 7, 2007
Kai has autism
When Kai was about two, I began to wonder why he was not really talking yet. Of course, his pediatrician said not to worry, boys talk late sometimes.
At two and a half, I asked again why my son was not talking yet, only to be dismissed, as if I were just another neurotic mother, overreacting to imagined issues. I was told to wait, and if he had not progressed, we would look into it when he turned three.
When Kai turned three, the doctor suggested that I make an appointment to have him screened by the school district. Finally, a course of action had been proposed, and I leaped into motion.
I called the school district to request a screening, and after two weeks of being bounced around from voice mail to voice mail, I finally got an appointment to have him observed...in a month.
After an excruciating wait, he was screened. This appointment was just the "entrance exam" to have further observations approved...after three more observations, painful delays and lots and lots of stress and worry, they finally dropped the A-bomb.
"Your son has Autism"
This was in early December of 2006. By the end of the month, Kai had been approved to begin his first therapy...special education classes through the state run preschool.
This was the first time I had been able to DO something to help my child. What a relief and yet, I knew it was not enough. We added other therapies to his schedule and, finally, a year later, I began to hear about biomedical measures that I could start on my own without the help or approval of our pediatrician.
There is such extreme time pressure put on families to help their children overcome the debilitating effects of autism, and yet, there is very little guidance from the people you rely on to guide you. Doctors, teachers, therapists...they are all limited in what they are even allowed to share with you about therapies that have been successful for some, but are not proven for all. Research leads you down so many avenues it becomes hard to separate legitimate therapies or biomedical interventions from those that offer false hope and financial peril. Everything costs a lot of money and most insurances will offer little to no help with anything.
A year later, I am finally beginning to feel like I have a solid plan of action including both traditional therapies and new biomedical treatments, but I don't know if I will ever feel like I have done enough for my precious baby boy. I don't know if I will ever stop feeling angry and betrayed for losing a year that I could have been using to help him, because I was not encouraged to take action. I don't know if I will ever stop blaming myself for not educating myself sooner and taking action anyway...
But, I do know that my son is growing and improving everyday. I do know that he is a wonderful child who will have a world of opportunities to explore in life. I do know that autism is not the end of all my hopes and dreams for my child. And, I do know that I will love him and be here for him whether we conquer autism or not.
I just wish I had someone to tell me all this a year ago when I felt so lost and alone.
--Kristie
At two and a half, I asked again why my son was not talking yet, only to be dismissed, as if I were just another neurotic mother, overreacting to imagined issues. I was told to wait, and if he had not progressed, we would look into it when he turned three.
When Kai turned three, the doctor suggested that I make an appointment to have him screened by the school district. Finally, a course of action had been proposed, and I leaped into motion.
I called the school district to request a screening, and after two weeks of being bounced around from voice mail to voice mail, I finally got an appointment to have him observed...in a month.
After an excruciating wait, he was screened. This appointment was just the "entrance exam" to have further observations approved...after three more observations, painful delays and lots and lots of stress and worry, they finally dropped the A-bomb.
"Your son has Autism"
This was in early December of 2006. By the end of the month, Kai had been approved to begin his first therapy...special education classes through the state run preschool.
This was the first time I had been able to DO something to help my child. What a relief and yet, I knew it was not enough. We added other therapies to his schedule and, finally, a year later, I began to hear about biomedical measures that I could start on my own without the help or approval of our pediatrician.
There is such extreme time pressure put on families to help their children overcome the debilitating effects of autism, and yet, there is very little guidance from the people you rely on to guide you. Doctors, teachers, therapists...they are all limited in what they are even allowed to share with you about therapies that have been successful for some, but are not proven for all. Research leads you down so many avenues it becomes hard to separate legitimate therapies or biomedical interventions from those that offer false hope and financial peril. Everything costs a lot of money and most insurances will offer little to no help with anything.
A year later, I am finally beginning to feel like I have a solid plan of action including both traditional therapies and new biomedical treatments, but I don't know if I will ever feel like I have done enough for my precious baby boy. I don't know if I will ever stop feeling angry and betrayed for losing a year that I could have been using to help him, because I was not encouraged to take action. I don't know if I will ever stop blaming myself for not educating myself sooner and taking action anyway...
But, I do know that my son is growing and improving everyday. I do know that he is a wonderful child who will have a world of opportunities to explore in life. I do know that autism is not the end of all my hopes and dreams for my child. And, I do know that I will love him and be here for him whether we conquer autism or not.
I just wish I had someone to tell me all this a year ago when I felt so lost and alone.
--Kristie
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