It’s About Community

Every so often, I go back and reevaluate what I’m doing here – what my purpose is – in writing this blog.  In a way, I did so a week or so ago when I was contemplating giving it up for a while (see my post Walking Away), but I really wasn’t evaluating the reasons to continue.  I was looking at the reasons to stop.

Ultimately, I felt compelled to stay.  Call it a habit or some other emotion, but I’m still here, and – as best as I can reason out – here is why:

I’ve said before that the “Me too!” moments are what I’m going for each day.  I want to find camaraderie in this journey, but I hope that you do the same.  I hope that for just one person a day, they can read something I write and have that cathartic feeling of “Me too!  I thought I was alone, but I’m not!”  We can share struggles with people who GET IT.  We can share the small triumphs with people who GET IT.  It is through this mutual sharing of experiences that we can all take comfort in the difficult moments and feel all the more proud for the little victories.

We all know that support makes this journey – a journey fraught with trials, tribulations, and beautifully sweet rewards – all the easier to travel.  None of us is an island.  It truly takes a village to raise each of our children, as is evidenced by the team of professionals we all assemble to undertake that task, but it also takes input from others who have walked this path.  It takes input from other parents who have raised or are raising special needs children because it is these souls who can best understand what it is like to walk daily in my shoes.  It also takes input from autistic adults, teens, and older children, because it is they who can best describe what my boy cannot in both the good times and bad.  It is through virtually walking hand-in-hand with each of you that I can be a better parent, a better advocate, and a better person.

In a nutshell, it’s about building a community.  It’s about building a community that I hope my child can enter into as his days increase and – God willing – use his own voice to speak of HIS journey and advocate for himself.

Besides this, I feel that I have a responsibility – an obligation – to advocate for my child and all autistic and special needs children.  Now that I’ve walked this path with my child, I can never return to the life I lived before.  He has forever changed me, and for the better.  He has shown me what true beauty is, what true love is, and he has shown me the goodness that exists within humanity.

The trouble is that not everyone sees that.  Some people look at my child and see their definition of autism.  They see flapping hands – a red flag – or speech delays.  They see an awkward gait or a meltdown.  I cannot change that people are going to judge my child, but I can change the conversation. I can influence the dialogue so that what they see is not what they imagine.  I can help them see that flapping hands is happiness.  I can help them see that speech delays are both a neurological condition and my boy working so hard and coming so far.  I can help them see that the meltdown isn’t the result of a “bad kid”, but the product of a nervous system that processes the world differently.

If I don’t share his story, if I don’t work to educate others, and if I don’t spread truth and understanding about autism…who will?  Sure, there will be others to take my place, but who best to do so than my son’s mother?

My child doesn’t live in isolation, either.  He, too, is a part of a community of autistic children, one that grows daily.  By default, through sharing his story and trying to make the world a better place with more understanding about autism, I hope to be doing the same for every child like Jack.

Building community and changing the world – that’s what it’s all about.
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Jeanie Devine

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