web analytics

Forward

December 31, 2012 in Featured by Robert Rummel-Hudson

So what to say on New Year’s Eve? Do I write a standard end of the year thing? List of resolutions? Best of/worst of list? Isn’t a NYE post just supposed to write itself?

Perhaps. But I’m not sure I feel compelled to look backwards this morning.

I’m thinking about the new year, and all the changes that are coming. Schuyler goes into 2013 as a newly minted teenager, and that’s something she is taking very seriously. Schuyler works hard to overcome her own demons, some of which are related to her disability and others perhaps coming from a different monster altogether. Becoming a teenager has convinced her that she needs to grow up a little, even though honestly, it’s something that I don’t think she really wants to do.

Like a lot of special needs kids, Schuyler is hard to pin down on any scale of age appropriateness. It’s impossible to say that she’s got the intelligence level of the maturity level of a certain age group. She is all over the map, as she always has been. In some ways, she presents as much younger than she is. In others, mostly emotionally, she is wise beyond her years. What you’re left with is Schuyler, as she is, an innocent (perhaps even naive) little girl and sober young woman. Another year will bring some big changes, but some aspects of who she is will stay as they are. And the trick of reconciling those different levels of growth will still be Schuyler’s to pull off.

Julie and I will continue to try our best, stumbling at times, striding confidently at others. We will continue to do what needs to be done at home while facing a world that doesn’t understand. “Oh, that’s just like what every teenaged girl goes through,” I’ll continue to be told by well-meaning commenters on Facebook. “Oh, I get that. My daughter went through the same thing, except of course she can talk and isn’t developmentally delayed and doesn’t have the threat of seizures hanging over her head. But still…” We will continue to smile as the world sees a little girl who presents so normally and who almost passes, almost, while we worry about a future that frankly, neurotypical parents just don’t understand. We don’t understand it, either, but we know it’s going to be hard, for Schuyler most of all.

There are a lot of changes waiting for her this year. One year hence, when we’re looking back on 2013, it may very well represent something very much like a whole new life for us all. But there will be certain things that won’t change. Schuyler will be Schuyler, the same weird and wonderful little monster-slayer that she’s always been. She’ll remain in the care of a loving mother and father, in a family that probably doesn’t look like yours but is nevertheless exactly right for us. She’ll have triumphs to look back on, and setbacks, and hopefully there’ll be more of the former than the latter. She’ll be ten feet tall by then and will have even more smelly boys lurking around, unaware of the mortal danger they’ll be in. (I may be old, but I’m driven by overprotective dad power with a boost of curmudgeon for good measure. You’ve been warned, punks.)

But most of all, she’ll still have her monster. She’ll still wrangle with it, negotiate with it, figure it out. She’ll get knocked down by her monster from time to time, but Chumbawamba-like, she’ll get back up again.

And she’ll still have me. She’ll always have me, until I run out of years myself. Like all of our kids, Schuyler will walk into an uncertain future but she won’t be alone. Never alone.

Happy new year, everyone. Bring it on.

Around the Community

October 28, 2011 in Featured, From Julia by Julia Roberts

Halloween Monday? Who thought October flew by?

I don’t usually say time passes quickly but it did this month. What is that saying…the days are long the years (or months) are short? We’ll be writing about New Year’s Day before you know it.

We’re in full swing here and have some great things on the horizon. For example, starting on November 10th, Jen Lee Reeves of Born Just Right. She was so enthusiastic to do something here, we thought this doing our Friday wrap ups would be a great way to jump in! Welcome her! You can find her on Twitter at JenLeeReeves. Thanks Jen!

New Members!

Lindsey - her little boy has the same disease my kids have and so I hope I can personally offer her support as they move to kidney transplant. Very exciting times. Welcome Lindsey!

Rob – he came over here from to read and comment on the recent Silo post about working together in the larger disability community. Thanks for your comments.

Alicia – also came over as a result of the Silo post…Alicia, I appreciate your comments as well. Please click on her page and her blog and go get to know her. I am.

Paula – married mom to a teenager waiting for a liver transplant. I hope we can learn from each other. While I’ve been through the transplant journey (with kidneys) we’ll also be working the liver transplant system as well. Welcome Paula!

Don’t Miss Topics & Groups!

School  and IEP Groups...IEP Discussions is one of them, be sure to check in if you have questions about an IEP or are needing support about one of those meetings you  might have coming up.

Community member Jen Troester let me take an off-line discussion in email and put it in a topic. It’s about changes to her daughter’s IEP but Jen is struggling with the idea of pulling out for lunch because that removes some social interactions she can use…weigh in!

 

Also a new group for 504 ADA and Parenting the Special Needs College Student has started so go and join it if you have an interest in information about college and disabilities.

Adults…happy to say we also have a fairly new group for College Students & Adults with Disabilities started by self advocate Erin Breedlove (@erinrbreedlove" href="http://twitter.com/erinrbreedlove" target="_blank">@erinrbreedlove), go and join that group because Erin is terrific and open and welcoming. Get to know her!

Groups for FunScrapbooking is under that category. Be sure to join and check out group owner Siobhan’s tips and tricks. She’s a photography and Creative Memories rep, in case you need any supplies. She also makes some great books and she is great at helping people stay focused (namely, me).

Stressed? So, I’m  headed over to our Caregiver Stress group. Come and talk about it. Also, there’s a private group you need to ask to join that is Room for Rants. Join and share what is getting under your skin.

Community member Andy’s son is facing eye surgery on November 1st…been through it with yourself or your child? Go offer support in the Visual Impairment Group.

How to Get Around on the Site!

The best, quickest way to see what is going on is to visit the Latest Activity Stream, which you can click on in the bar on the top of the site. You can also check out Our Forums, which also can be found on the top bar. And of course, in the center of the site on the home page you will see what current topics are being visited.

How To…Wondering how to do something? Here’s a list of How To topics for you presented in a simple way.

We hope your weekend is off to a great start. If it is, share with someone who could use some support in the groups, and if your weekend isn’t off to a great start, share the struggles. It’s always better to know someone is in the same boat, right?

%d bloggers like this: