Thursday, September 18, 2014

Support

I love/hate the question: How do you do it?

I hate it because the answer is, I don't have any choice, "doing it" must be done.

I love it because it means I must be fooling at least one person.

The real answer to the question is, I have a lot of support. I have the best friends in the world and plenty of them. That is something for which I am deeply grateful and simply could not do without.

I met with a friend recently that was visiting from out-of-town. When she moved from Portland she left her support system, and has a hard time re-creating it. One cannot easily "create" a support system, it takes time and to a large degree, is organic. However, if you are starting at zero, then your task is to find just one other person with a child with special needs. The needs don't need to be the same, the gender, age, none of that really matters. You just need one buddy that lives on the same planet you do, when it feels like you are an alien on your own.

When feeling alienated, I would also recommend a total eschewing of Facebook, and the like. Facebook is a lie. Don't get me wrong, I like to pop over there myself from time-to-time, but not when I'm feeling down. I know people that have had terrible vacations, and the one moment everyone was smiling and happy, that was the moment that went on Facebook. I've known people that have travelled for very unpleasant reasons, yet the picture on Facebook is of the ocean, lapping the sand, and the message is, "Taking a walk with my sweetheart." When you feel like everyone has a better/easier/happier/less-stressful life than you, Facebook is not your friend.

And a friend is just what you need.

If you're looking for an existing support group, start by asking your child's special ed. teacher, if there is one. If there isn't, consider starting one. The "rules" are simple:

1) Speak freely, knowing everything will be held in strictest confidence.

2) Come to the support group meetings even when, and perhaps especially, you are no longer in crisis. A group is not successful when everyone is in crisis all at the same time. You need people at all stages of the grief/healing process.

3) Meet at such a time and such a place, that your kids are not around - many churches have meeting spaces that are free to use.

4) Have someone keep notes and collect the resources that are shared. We now have a very detailed resource guide, everything from cranial sacral therapists to psychiatrists, occupational therapists to acupuncturists, vision therapists to marriage counselors.

5) Be OK with wherever you are. "There's no where you need to be with this pose," my yoga teacher says, and I love it. There are no "shoulds." Accept where you and your child(ren) are and move from there. Any movement is progress.

6) Ignore all advice from those that don't walk the path. Smile, be kind, but seek your counsel elsewhere.

7) Believe in the power of being heard. You don't need to fix the problem for anyone, you need to witness it, be present to it, allowing each person to have their story.

8) Laugh. Laugh when it's funny. Laugh when it's not funny. Laugh whenever and wherever you can.


You are not alone. You really aren't. Now, get out there and find someone to remind you of that every day.



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Carrie is a parent and advocate of a child with special needs and even more special gifts. She blogs at http://carrielink.blogspot.com/ where this is pretty much her favorite topic. Carrie’s book, WIL OF GOD: Embracing the Relentless Love of a Special Child, is available in print on Amazon and all e-readers.



15 comments:

  1. I love you. I love the rules. I love that you love to laugh. You are so right about the importance of being around people who 'get it,' and your wisdom after having walked this path for so long is absolutely priceless. I hope everyone who reads this takes it to heart. You are a wonder, my dear.

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