This Is Why We Do It

Since the horrible tragedy last week of the attempted murder of Issy Stapleton, autism families and bloggers everywhere have been trying to make sense of an incomprehensible act. Articles and blog posts have been written, accusations and hurtful words have been tossed out without regard to the fact that dividing our fractured community further will only take energy and resources away from autism families – and not help the most vulnerable of our population.

Since Issy’s attempted murder, many things have been said about autism parents and parent bloggers. That we blog because we are attention seekers. That we are martyrs. That we use our child(ren) and their disabilities as nothing more than punchlines.

I can’t answer for every parent blogger, of course. Just as any random self-advocate cannot answer for all other advocates. But I want to explain something. I want to explain why I blog. Why we at MSNN blog. Why the men and women bloggers who make up my tribe and support system blog. And why we don’t.

We blog because parenting is hard work. It is like the Marines: the toughest job you’ll ever love. In fact, Parent Magazine, Baby Center, the What to Expect book series, and countless others have created an entire media genre and business model based on motherhood. Parenting a typical child is hard. It is. Saying that doesn’t mean we don’t love our typical children, so why is it that if we say that special needs parenting is hard we have advocates calling us monsters? It’s okay for something to be difficult – the rewarding stuff always is. But we need a place to connect with other parents facing similar challenges and situations. Cyberspace is the only convenient meeting place for many of us. We typically don’t have respite or trained childcare providers, remember?

We blog because we remember what it is like to feel alone. We may not have known what to do upon getting a formal diagnosis for our child. Just love them the way they are is both ignorant and short sighted. Of course we love our children. The diagnosis didn’t change that. But it did change the way we need to parent. It changed the plans we had for our children. The doctors don’t tell you what to do after they give you the label. They give you a woefully short and most unhelpful pamphlet, and the website for Autism Speaks. And then you leave wondering what you do next. We remember that feeling of helplessness and of having more questions than answers, and we want to help the next family coming down the pike. It’s lonely as a special needs mom. Our kids ride separate buses. We don’t do soccer, football, swimming, and Tae Kwon Do. We do OT, PT, Speech and ABA. Our kids’ classes are ignored largely by the PTA/O. The other families on our street think our family is weird. They’ve stopped inviting us to stuff years ago. But online, we have community. We have friends who know what we are going through. And we want to help give that to anyone and everyone who is looking for it.

We blog to share milestones. Just like other parents share pictures or videos of their kids, we want to, too. Our milestones and celebrations may be different than our “typical” counterparts. We might celebrate a kiddo making a poop in the toilet (he’s seven), a trip to the grocery store without melting, a successful introduction of a new food. Other autism families get it. They celebrate our successes with us, and they share their own. It’s community.

We blog because we have questions. We might not know any other special needs families in real life. Doctors and professionals still have a long way to go in regard to knowing about autism. Too many still think Rain Man or Temple Grandin – and that’s it. We need affirmation, reassurance and the knowledge that other people’s kids are also exhibiting “X” behavior. Just like on Baby Center when people write in and ask why their two year old has started saying, “no,” autism parents need to know that other children have problems with fluorescent lights – and then get an idea or six about how they can help their child cope with those doggone lights (which seem to be everywhere!).

We blog because we need to write. It burns within us. Just as you blog to get your feelings, frustrations, hopes and successes out. We have the same feelings.

We blog to raise awareness of our children’s needs, of the needs of the community – as we see them, to advocate for insurance reform and the state of the mental healthcare system, of the state of services in our area.

We blog to rally the troops and to provide support to families in their darkest hours. We blog to let them know that they are not alone. That we are here. That we understand. That tomorrow will be a new day.

But we do not blog for the attention. We do not blog to have our words taken out of context, to be accused of wanting to murder our children because they are disabled. We do not open ourselves and our family up scorn and derision. We do not blog to be told that by fighting for therapy for our children that we are abusing them. That by trying to teach them, discipline them and provide them with a structure and foundation, that we are able-ists and that we are trying to hide their true selves.

I want so badly for parents and self-advocates to come together. We need to be able to talk about many different concerns within our community. We do need to have the conversation about the resources for autism families. We need to talk about the challenges of families with violent and aggressive autistic individuals. About the lack of understanding on parts of parents and self-advocates. We need to come together. We need to drop our defenses, and we need to stop the blame game.

And, sadly, I am not sure that will ever happen.