Apraxia Community

Aside from necessity for work, I was probably the last of my friends to really get caught up in the internet, social media and all it has to offer. Much to the chagrin of my very tech-y husband, I still don’t have a Gmail account. I would set up a facebook profile and then after a short time cancel it out of annoyance and frustration at the whole concept. I did this at least three or four times. I tried to resist it,  but finally caved in order to keep in touch with my nieces who barely even talk on the phone anymore. Now it’s, “just facebook me”. It is also the main way I share photos and updates with family and friends these days.

I’ve been struggling with how technology is taking over our lives, especially when it comes to communication. I worry that ten years down the line no one will be really talking to each other and we will all be living in our own little lonely online bubbles. I worry what it will mean for Henry. I worry email will completely replace the handwritten letters and cards I love so much, or that Henry will lose his love of books because they become obsolete.  So, sometimes I’m on my soapbox about these topics, and like I said, I’ve tried to fight it…but it’s a losing battle.  Now I am online probably more than any of my friends. This blog is my case in point.

What I’ve learned over the last year is the amazing power of the internet. Before Henry’s diagnosis, I was never one to be on discussion boards or join groups. I didn’t really have a place in that world. I was still learning about blogging too and was naive about it’s power in connecting people. It states the obvious when I say that the web brings the world together and makes it a much smaller place.

I may be giving my age away here, but back when I was in school (man I sound old) we didn’t have access to computers or internet. We went the library and we checked out books, looked up things in encyclopedias, and we looked at newspaper articles on microfiche (remember microfiche??). My point is that information came slowly. Information travels so quickly now, in seconds! You don’t have to be an expert in the field and have your book published to share your story. You don’t have to blindly trust your doctors. You can find alternative therapies and read what has worked for other parents. This is an incredibly powerful tool, one that I’m sure some doctors don’t appreciate most days. I, for one, am extremely grateful.

It’s essentially what led me to understand what apraxia is, what I have to do, how to get it diagnosed and treated. I found apraxia-kids.org and ASHA amongst others. It helped me find Nancy Kaufman, her seminar, and eventually her clinic where I believe Henry’s first breakthrough was made. It opened me up to families all over the world going through the same thing with their child, which was a tremendous source of comfort, never mind information!  I found women who I could relate to, who understood my anxiety and fear and hopes for Henry in a way no one else could…and they in turn supported me like we had known each other for years. I have never actually met these women in person. And much of this was due in part to Facebook. Facebook. Who knew?  There are stories like this everywhere now. I guess it’s all in how you use this powerful thing called the internet. We will never go back to the way it was, I know that much. For those of you on this journey, or one that’s similar, take a moment picture it without the internet. Crazy right? I really don’t know where I would be… or rather Henry. It scares me to think about it.

I am in awe of  the apraxia community I have found online, through apraxia-kids and Facebook in particular. I may have become a little cynical in my old age, because I am still surprised at how people reach out to one another, selflessly and with warmth and generosity. Everyone is busy these days, especially parents of children with special needs. When someone takes the time to answer a question or share in one of those little victories that only those with kids with apraxia can understand, I’m thankful and elated. To all of those people and also to everyone that checks in on Henry’s progress and reads this blog and/or leaves comments…thank you. Truly. It’s amazing isn’t it? How we have all found each other traveling down a similar road.

I still love books and libraries, #2 pencils and nice stationary… I prefer phone calls to text messaging and greeting cards over e-cards, but I give up…I surrender! The internet has won me over and is one of my biggest allies in fighting apraxia, so thanks triple “w”!


3 thoughts on “Apraxia Community

  1. So true and I completely relate. I have been a techno geek due to my hubby’s obsession with all thing technological however this amazing group of moms that I have found through apraxia-kids has meant so much in these past 6 months since dx :) I too have also started a blog. I find it help me explain things to my friends and family outside of the special needs community to share with them our new journey.

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