Friday, September 3, 2010

WHAT AM I DOING??

That's the question I've been asking myself for 3 weeks now. Followed very closely by, HOW do I do this?

The reason behind this blog initially was that I went on a hunt for blogs of moms with kids with Down Syndrome who were also school age, and found very few. There were many that chronicled the transition to This Side. The entering of the trenches, as it were...and a few that shared the struggles of an older child transitioning to adulthood... Now, these are encouraging, the Beginnings because the memory of the Big Stuff is still very fresh. And they put into perspective the daily weight of Now. The Entrances to Adulthood, give hope for the independence that will someday be attained.

Why do we tend to be so closed-mouthed about the school-aged struggles? I really think it comes from what happened when I started bouncing the idea for this blog off of people.

I asked a few hypothetical questions on Facebook and a couple of parenting forums and got a firestorm of responses...and surprisingly I got one of three responses... 1) I got parents of kids with special needs saying they already had their plates full to overflowing that they had no time for advocacy and they needed encouragement! 2) I got questions from parents of typical kids asking HOW to treat kids with special needs? How to answer the questions their kids were asking? How could they help us, because they didn't even know what we were going through. 3) I got parents of kids with special needs reprimanding the phrasing of the questions of the parents of typical kids.

So I sat down and really started thinking. Did I want to meet the needs of Us or Them? There were very clear needs for both sides. Which need was greater? Which need did I feel equal to?

I just want to make one thing perfectly clear. I am not equal to either need. This is a bumbling attempt of a regular parent to open a forum...to open the lines of communication between the Us and Them. Because we aren't any different. We are parents trying to care for our kids and provide them with as much love and support as we can. We pray over them and agonize over if we are doing our best by them. We are worn down by the daily grind, the only difference is what the daily grind entails.

I have 4 kids. I get a lot of shocked looks over the number of people in my posse, and get the "cute" comments of: "I don't know how you do it with 4 kids...I have my hands full with 1 or 2 or whatever..." My response is always the same. "Kids are like Goldfish. You know how goldfish grow to the size of whatever tank they're in? Kids are the same. They take up all your time. If there is 1 or 6, they take up all your time..."

If you are a parent to a kid with special needs, then people tend to leave that as your Label. Nevermind that I have 3 other kids who do not have a legal diagnosis. But do not all our kids have needs that are unique to them?

SO. What I am going to start this as, is place where we can ask all the questions that no one feels safe asking. I am going to tell the Whole Truth. I have a bloggy friend that labels her posts as Brutally Honest....as a clarification of whether her content is for the faint of heart. I may have to ask her if I can borrow her rating system! :)

I am going to do "Us" and "Them" posts. What we "wish They knew" and what "They" need to ask and understand that no one ever answers. I would LOVE to have guest bloggers. I would love to hear from you. If you have a rant, if you have a questions, if there are suggestions that would help, please don't hesitate to email me.

2 comments:

  1. Just wanted to say I love your blog and the entries so far. I was one of the "typical" parents that asked how I should respond to my childs questions. You gave me great advice and also said as they are still young, just give them as much knowledge as they can take in right now.

    I was asked yesterday about one of the kids in his school. My son said he sometimes "act's like a toddler" but is 6, the same age as him. So I tried my best to explain how people are born differently sometimes and although he may look the same as everyone else on the outside, sometimes they are a little different inside. But that he should still be nice and kind to this boy as it might hurt his feelings otherwise. Also mentioning how sometimes older kids can be mean and I'm sure he wouldn't want to be mean to this boy.

    I hope I did an ok job at explaining. Hopefully your blog will help me out for the future.

    Thanks for sharing your experiences and I love your description of a little downsy.

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  2. ooops....think I meant to say I was one of the parents of "typical" children! I've been told by my kids several times today that I'm crazy due to my, ahem, singing! Definately not a typical parent!

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