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Between you, me, and the (lamp) post

My son Zach will sometimes stand to my right and watch me scroll through Facebook on the laptop. When something catches his attention, his head leans in, and his thin fingers take over the trackpad. He knows exactly how to manipulate it to go back to whatever it was he spotted.

Often, a picture of a child or teen catches his eye. The Facebook groups geared toward autism frequently have such posts, and I wonder if he intuitively senses those children are on a similar path. When he's done looking, he withdraws his hand and steps back, as if to say, "Go ahead, Mom, I'm done." I don't mind sharing this with him at all. Yet, once in a while, while he's looking, I'll read what's posted...

There are thousands of Facebook groups for the special needs community, and hundreds for the autism community. A brief look at Facebook's Explore Pages shows the variety of topics into which parents can delve: Autism Self Advocacy Network, Fitness for Autism, Spectrum Support, Aspergers Social Activities Group, and more. Over the years, such groups have been born from a need a family has regarding their child or teen or young adult living with ASD.

I belong to several groups. Some are the generic, all-encompassing, "support" driven groups, while others are the specific and sometimes local groups with parents whose names become recognizable over time. I've garnered information from each group along my own journey, and I've offered tips and suggestions and links in an effort to help others in their journey.

The hardest posts to read, in my experience, fall into two categories. Parents of young children who are newly-diagnosed with ASD and parents of older children or teens who are experiencing aggressive behavior.

My journey, or that of my family, has taken us down both paths. Although the diagnosis was two decades ago, I can feel the intense emotions coming from overwhelmed parents as if it was yesterday. Their fears were my fears. Their confusion and frustration are familiar to me and instantly recognizable in what they post.

Having experienced aggressive behavior in my then-teenaged son, along with self-injurious tendencies, I almost feel a physical jolt when parents write about their own son or daughter going through aggression. Because there can be safety issues related to such behaviors, for all involved, dealing with aggression is no joke. Reading about their pain and lack of options and support can bring a tear to anyone's eye.

Perusing the comments on posts about aggression or what to do with a new diagnosis makes one see the diversity in perspective 'out there' as well as the range of responses. It seems to me that it can be doubly overwhelming for the person posting a concern to sift through what everyone is offering!

Although we as a society these days put a lot of stock in social media comments (especially ones directed to us personally), it might be a good thing to step back from that. We may be taking the comments of complete strangers to heart in a way that minimizes (or even casts aside) our own knowledge and intuition about a concern or a problem. We end up putting more faith in the supposed expertise of those who take the time to read our posts and respond to us with their insights.

Sure, I think there are helpful insights to be shared. There are advantages to gleaning information from social media and posts about how to handle parenting situations. It comes down to our ability to sort through what's presented and tweeze bits of gold from heaps of charcoal.

And no doubt - sometimes it just makes us feel better or more confident in our roles when we know others are, or have been, experiencing a similar situation. It's the you're not alone virtual hug that can turn around someone's day, right?

So as I continue this journey of special needs parenting, and face the good, the bad, the ugly, the fantastic, the challenging, and everything in between, this is what I'd say for what it's worth: for parents starting a special needs journey, take your time. It's cliché but it really is a marathon and not a race. Take the time to learn, research, explore, weigh options, and care for yourself. Do not put yourself last. Easy to say/hard to do.

For those facing aggressive behavior, you may not be able to take your time with this. With safety concerns, acting quickly is imperative. There is help out there, and online support may be crucial in areas where in-person help may be impossible to find. You as a parent are capable of things you may not yet realize you are truly capable of; don't sell yourself short. Don't make others the expert when it comes to your child.

As a special needs mom, one of the pearls of wisdom I think I may have polished lies in the belief that I have wisdom and keen intuition about what's right for my child, not only in light of what others may say, but also regardless of what others say.

There is validity where you stand right now, whether you are new to special needs or are going through something 20 years into your family's journey. For whoever may need to hear it, you have permission to stop the noise all around you and listen to your own heart and mind. Permission to listen, and then, to act. Or not.

Giving yourself 100 'likes' is far more significant than 1,000 likes and comments from people who do not walk in your shoes.


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