Before I get into this post I want to say that I in no way wish to perpetuate the myth that special needs parents are always franticly trying to fight for their children. This image of an "I'll do anything for my child and I don't care who I plow through to get there" parent can be damanging to our cause. I have been guilty of fufilling this stereotype but in recent months have found that I have been lumped into the category of "pain in the ass" by some. In some way I deserve that title but not for my efforts to bring attention to issues surrounding autism services or special needs education.
I don't want policy-makers to listen to me because they are afraid that I have nothing to lose and will scream at the top of my lungs at how unjust it all is. I want them to listen to me because I am well-read and well-researched; because I have years of experience in the area of special needs education and because I am the mom of a special needs child. I want them to listen to me because I have an army of people beside me that are as articulate and motivated as anyone. People that are ready for the discourse, the dialogue and the debate.**
Having said that, there are times when I am not on the ball and that is where you come in. Every time you click on a post or support us with a kind word you are helping us spread our concerns to people outside of the autism community and when everyday people are armed with the knowledge, the issues and the right questions the politicians cannot ignore us.
So, thank you so much. Thanks for clicking the like button. Thanks for sharing and most of all, thank you for reading.
This is how I see it: In many ways, parents of special needs children can be too (insert list of synonoms for exhausted here) to fight every battle that comes their way. Some battles are even so well hidden we don't even know we should be fighting them. We are so accustomed to fighting for services, respect, attention to the cause and dignity for our children that we might miss some of those battles that seem less crucial. For example, parents who have been waiting more than two years for services for their child might expend every ounce of their energy into getting those services, leaving them little time to ask the question whether the services in question are appropriate, legitimate, and best suited to their child. Maybe some ask all the right questions but if they are like many they become so grateful for any service, after going without for so long, that they might not question the validity or whether it coincides with their personal philosophy or beliefs. Furthermore, many parents of children with special needs* are struggling between the need for privacy for their family and the need to shout their story to anyone that will listen. So, if we get these issues out and into the minds of the masses then we have more people 'working for us' so to speak. It's why awareness is so important. I used to think raising awareness was a slightly more involved initiative than slacktivism but now I get it, I really get it.
Clearly, I have chosen to shout my story. Here is why: We cannot do this alone. I firmly believe that we have to put our stories into the collective conscience. The people and the politicians must have the very personal stories of the people before it will become an issue worth fighting for. So, we tell our stories and watch our teams of supporters grow. I don't mean to say that every person with a special needs child need announce their story to the world but I will say that I am so grateful for the many that do. The countless mommy blogs that recount brilliant, heartbreaking, embarrassing, funny and hopeful stories like Homestyle Mama (with a side of autism) or The Autism Art Project and the much rarer but, no less genuine, daddy blogs like Big Daddy Autism and Lou's Land are the reason I decided to enter the world of autism blogging. And I am so glad I did.
*this person first language is getting tiring and I am not entirely sure it is worth our energy, and there is an extremely well-written post about this subject which I cannot find at the moment; but that is another battle. See what I mean about all the battles?
**I stole this photo from the FB page of Jim Walter. I have linked it back to his page because I don't know the original source. It made me laugh out loud and actually most things he posts do.
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Grace and Kate's mom. (Shanell)