We received our diagnosis in July of this past year, so as we close out 2009, I wanted to reflect a little on the experience of being a newbie to the world of special child parenting.
The first thing that struck me when we were told that Noel has Asperger’s, is that I really, really wanted to blame someone. I wanted an explanation, a reason for the way he was. I needed a clear cause, and I quickly learned that opinions vary. But the other thing that became quickly clear – if there was blame to be laid, it was probably going to be laid on me.
We are hard on mothers, this society. At the best of times we want them to be great, and at the worst of times, we expect them to be nothing less than superheroes. And we blame them. For everything. Is the house untidy? Mom is falling down on the job. Are the kids in daycare? What a selfish mother, putting her career ahead of her kids. Is there something ‘wrong’ with her child? Well obviously, she smoked/drank/ate sushi/vaccinated/looked at him cross-eyed when he was born. It is all her fault.
Letting go of the need for a reason also allowed me to let go of the blame that was being placed on me, by external and internal forces.
The second thing that I’ve wrestled with is the politics of all of this. There are, of course, government agencies who will give you support only if you meet their specific, and sometimes frustratingly unclear, requirements. There are buzzwords, and politically correct words, and the wrong words.
Every time I sit down to write a blog post, and to reflect on any aspect of this life, I find myself worrying about offending someone. If I say that I want people to accept Noel for who he is, with Asperger’s, does that mean I am putting the disability before the child? If I say that I wish he never, ever had this disorder, does that hurt the people with Asperger’s who feel they are enriched by their differences? (In reality , these worries are particularly silly because I have maybe 10 regular readers.)
But when I stop worrying about offending someone, I find that I can write about these feelings and it actually helps. I can speak up at a support meeting and maybe find others who are seeing things in the same light that I am. And I can learn, from others, their ways of looking at these struggles that we are all facing.
Finally, I have discovered the amazing wealth of support there is to be had online. While sometimes, I find that our real life sources of aid are lacking, I feel a certain comfort in the fact that I can always sit down with my computer, and immediately find someone who has felt these same stages of grief, who has been frustrated, or angry, or embarrassed in public. People who understand why we don’t just ‘teach that kid some manners’, or ‘tell him not to do that’. It truly is invaluable to find someone who is going through what you are going through, and so I keep writing, and I hope that everyone else keeps writing, too. Whenever you feel like you aren't being heard, remember that your words are making a difference for someone. And your voice is the voice that is speaking up for your child. And you are being heard.
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