A few months ago I had ants in my pants about the fact that there aren't any special needs support groups in our area. After speaking to a few different contacts in the special needs world I learned that most groups fizzled out a few years ago. Lovely. I was done searching and moved on to "Well, I start one then. So there!"
So, I contacted a friend at church and asked if we could start a group there. This is one of those moments where the stars aligned just perfectly. She told me another church member and her husband were just organizing and planning such a group.
We've been meeting for a few months now and its been absolutely wonderful. We've met some awesome people and formed some great friendships. It is the most amazing feeling when I say a phrase or acronym and do not have to explain it. To have another parent understand how a special needs bad day is different than just a bad day. To vent and have someone actually get it. We laugh, we cry, we support one another. We share resources. We opened new doors.
Did I mention how great this is?
Jer and I learned quickly that we're sort of veterans in the special needs world. While AJ is still young, we've been around the block and then some. I've said it before, but a little tiny piece of my heart heals each time I am able to use the knowledge we've gained from our experiences with AJ to help someone else.
Hooray!
Showing posts with label support. Show all posts
Showing posts with label support. Show all posts
Saturday, June 16, 2012
Sunday, April 15, 2012
Sharing
I have so much to share. As usual, I'm behind on the blog. What happened to posting every day? Yeah. Not so much.
Tonight we had the privilege of sharing our family's story with our special needs group.
Our what? Yeah, I haven't shared about that-but I will.
Our group is devoting the first 15 minutes of each meeting to focusing on a particular family. We paved the way tonight, sharing our family's story first. It has been quite a while since we've shared our story. But there was something very different this time. We went from the beginning to now, spanning almost 5 years. We had AJ in the meeting in the beginning to show everyone who he is now. Then, we shared our story. I think it really helped the group, and us as his parents, to see how far he really has come.
The purpose was to share our history and share our child's strengths. And sharing the things "they" said he'd never do and is now doing. AJ's determination slapped me in the face as I was speaking. He doesn't know he's any different than anyone else. We all love the same, don't we? He's determined. The most determined person I've ever known. If he can be that determined, then we can be that determined to keep advocating for him the very best we can.
Tonight we had the privilege of sharing our family's story with our special needs group.
Our what? Yeah, I haven't shared about that-but I will.
Our group is devoting the first 15 minutes of each meeting to focusing on a particular family. We paved the way tonight, sharing our family's story first. It has been quite a while since we've shared our story. But there was something very different this time. We went from the beginning to now, spanning almost 5 years. We had AJ in the meeting in the beginning to show everyone who he is now. Then, we shared our story. I think it really helped the group, and us as his parents, to see how far he really has come.
The purpose was to share our history and share our child's strengths. And sharing the things "they" said he'd never do and is now doing. AJ's determination slapped me in the face as I was speaking. He doesn't know he's any different than anyone else. We all love the same, don't we? He's determined. The most determined person I've ever known. If he can be that determined, then we can be that determined to keep advocating for him the very best we can.
Saturday, October 23, 2010
Comfort
There seems to be a huge misconception that Jeremy and I are comfortable with everything that has happened in our lives in the last few years.
Let me clarify. NOOOOOOOOOOOO.
I've been thinking about writing a "What to say to someone when their life doesn't fit the mold, and then some" script. Seriously. I have come up with a few pointers, but not an actual script. Because another special needs parent may not want to hear what I want to hear, if that makes sense. But what I have gathered, in this "new-age" idea of embracing our children and pushing them not to their limits, but to their POTENTIAL, is that we don't want to be ignored.
I was raised to tell the truth, and while I fell short of doing so when I was younger (don't we all), I am quickly making up for that stint in my journey as a mom. AJ is complex. His story is not simple. It took me a good year to share his story in just one sentence. Add in that I am naturally a very detailed storyteller, you've got a motor-mouth on your hands. Most recently I've found myself refraining (I know, exciting right?!) from sharing things when people have made casual comments....
And it kills me.
I feel like I am portraying AJ as an incomplete person. This may sound wildly strange to everyone reading this, but its true. And then I thought about how I think part of my sharing AJ's story, with details, is my way of trying to help people understand. Knowledge is power, right? I dug further into my own noggin and realized that sharing AJ's truth helps me heal the wound that was created when no one told me what was going on with him.
Didn't I say I was going to talk about all of you? Gee Whiz.
It is no secret that sharing AJ's story, or anything, like "Hey, my kid had a seizure in the car last week and I called 911 on the side of the road," makes other people uncomfortable. But honestly, I encourage you to stop and sit in whatever words are spoken to you. Don't run, because you feel uncomfortable. Yes, I know it is shocking that I, the person sharing this devastating news, would realize that you are going to be uncomfortable.
But let's all think about this for a second. How long does your lack of comfort last? A few seconds? A few minutes? We may loom back into your brain every now and again, but do we dwell there? No. Be uncomfortable in that moment so that we, the people experiencing whatever was just said, can feel less isolated and less like a freak of the normal world.
People tell me, "We don't know what to say." Well, you can't fix it. So start from there. Don't try to fix it. But say something. At least something. "I don't even know what to say" is an EXCELLENT thing to say, if you don't know what to say. Why? Because you are aknowledging my world. Aknowledging my pain, my act of reaching out to you. Staring, or ignoring, crushes the heart. Ok, at least it crushes mine. Is it so much to ask you to be uncomfortable for a few seconds so I can feel some relief in numbers? I don't think so.
Being a special needs parent has given me a completely different outlook on life. It really makes me sad that I see so much selfishness...everywhere. It saddens me that AJ's "stuff" freaks people out. He's still AJ.
While I've posted before on how it is sometimes irritating to hear that this was "God's Plan" or His Purpose, or he won't give you more than you can handle...there is a reason that can be bothersome. I, as the person living this story that made you so uncomfortable for a few seconds, definitely feels like I've got more than I can handle. Those words don't act like magic fairy dust or ruby red slippers and make it all disappear. They don't make me feel better. Well, Heidi, you certainly have a crappy outlook on life, don't you? No, I don't. The Big Man Upstairs and I have been dukin' it out for a long time, and continue to do so. And no I'm not sharing that story.
Oh Heidi, you've never been on the other side. Well, yeah I have. I was recently in an uncomfortable situation myself. I was with an acquintance who clearly just needed to blurt it out and have someone there for her. I was uncomfortable. Really uncomfortable actually. I paused and then said "something"...and she started to cry. I recognized the type of tears that were flowing and stayed put as long as she needed me. We didn't say anything else to each other, we were just together.
That my friends, is comfort.
Let me clarify. NOOOOOOOOOOOO.
I've been thinking about writing a "What to say to someone when their life doesn't fit the mold, and then some" script. Seriously. I have come up with a few pointers, but not an actual script. Because another special needs parent may not want to hear what I want to hear, if that makes sense. But what I have gathered, in this "new-age" idea of embracing our children and pushing them not to their limits, but to their POTENTIAL, is that we don't want to be ignored.
I was raised to tell the truth, and while I fell short of doing so when I was younger (don't we all), I am quickly making up for that stint in my journey as a mom. AJ is complex. His story is not simple. It took me a good year to share his story in just one sentence. Add in that I am naturally a very detailed storyteller, you've got a motor-mouth on your hands. Most recently I've found myself refraining (I know, exciting right?!) from sharing things when people have made casual comments....
And it kills me.
I feel like I am portraying AJ as an incomplete person. This may sound wildly strange to everyone reading this, but its true. And then I thought about how I think part of my sharing AJ's story, with details, is my way of trying to help people understand. Knowledge is power, right? I dug further into my own noggin and realized that sharing AJ's truth helps me heal the wound that was created when no one told me what was going on with him.
Didn't I say I was going to talk about all of you? Gee Whiz.
It is no secret that sharing AJ's story, or anything, like "Hey, my kid had a seizure in the car last week and I called 911 on the side of the road," makes other people uncomfortable. But honestly, I encourage you to stop and sit in whatever words are spoken to you. Don't run, because you feel uncomfortable. Yes, I know it is shocking that I, the person sharing this devastating news, would realize that you are going to be uncomfortable.
But let's all think about this for a second. How long does your lack of comfort last? A few seconds? A few minutes? We may loom back into your brain every now and again, but do we dwell there? No. Be uncomfortable in that moment so that we, the people experiencing whatever was just said, can feel less isolated and less like a freak of the normal world.
People tell me, "We don't know what to say." Well, you can't fix it. So start from there. Don't try to fix it. But say something. At least something. "I don't even know what to say" is an EXCELLENT thing to say, if you don't know what to say. Why? Because you are aknowledging my world. Aknowledging my pain, my act of reaching out to you. Staring, or ignoring, crushes the heart. Ok, at least it crushes mine. Is it so much to ask you to be uncomfortable for a few seconds so I can feel some relief in numbers? I don't think so.
Being a special needs parent has given me a completely different outlook on life. It really makes me sad that I see so much selfishness...everywhere. It saddens me that AJ's "stuff" freaks people out. He's still AJ.
While I've posted before on how it is sometimes irritating to hear that this was "God's Plan" or His Purpose, or he won't give you more than you can handle...there is a reason that can be bothersome. I, as the person living this story that made you so uncomfortable for a few seconds, definitely feels like I've got more than I can handle. Those words don't act like magic fairy dust or ruby red slippers and make it all disappear. They don't make me feel better. Well, Heidi, you certainly have a crappy outlook on life, don't you? No, I don't. The Big Man Upstairs and I have been dukin' it out for a long time, and continue to do so. And no I'm not sharing that story.
Oh Heidi, you've never been on the other side. Well, yeah I have. I was recently in an uncomfortable situation myself. I was with an acquintance who clearly just needed to blurt it out and have someone there for her. I was uncomfortable. Really uncomfortable actually. I paused and then said "something"...and she started to cry. I recognized the type of tears that were flowing and stayed put as long as she needed me. We didn't say anything else to each other, we were just together.
That my friends, is comfort.
Wednesday, August 11, 2010
I Think About You
Disclaimer: This post is either going to make me seem extremely lame or thoughtful. Your pick.
I just sent an email off to another blog mamacita and had a brainstorm mid-keystroke. Certain things remind me of certain people. I'm sure you've noticed in this your own life. If you are already thinking this post is lame, then please, just please, pretend you've noticed this in your own life.
Yesterday I posted about my Gram-how I think of her when I see or do X, Y, or Z.
Well, I think about my fellow blog mamacitas a lot too. Even though we know each other (with the exception of Melanie) exclusively through cyberspace...I still know a lot about them.
When I see Ohio Buckeye sports apparel or ring stackers, I think of Jenny.
When I hear DMB (Dave Matthews Band) and watch DC Cupcakes, I think of Tina.
When I see a National Geographic mag or anything to do with Texas, I think of Tammy.
When I visit my in-laws in Iowa or see a bandana on a kiddo, I think of Shanon.
When I'm at the car wash, or see something the color purple, I think of Ellen.
When I hear spanish lyrics or play at AJ's water table, I think of Jennifer.
When I watch SYTYCD or make experience books for AJ, I think of Celeste.
When I see really, really, yummy chocolate or see mini-vans parked in handicapped parking spaces, I think of Jess.
When I see a Starbucks or any type of stuffed bunny, I think of Melanie.
We all read whats going on it one another's lives. We read, comment, cry, laugh, and cheer each other on. With all the negativity you can find in this great landscape called the Internet...I've sure found some positives.
I just sent an email off to another blog mamacita and had a brainstorm mid-keystroke. Certain things remind me of certain people. I'm sure you've noticed in this your own life. If you are already thinking this post is lame, then please, just please, pretend you've noticed this in your own life.
Yesterday I posted about my Gram-how I think of her when I see or do X, Y, or Z.
Well, I think about my fellow blog mamacitas a lot too. Even though we know each other (with the exception of Melanie) exclusively through cyberspace...I still know a lot about them.
When I see Ohio Buckeye sports apparel or ring stackers, I think of Jenny.
When I hear DMB (Dave Matthews Band) and watch DC Cupcakes, I think of Tina.
When I see a National Geographic mag or anything to do with Texas, I think of Tammy.
When I visit my in-laws in Iowa or see a bandana on a kiddo, I think of Shanon.
When I'm at the car wash, or see something the color purple, I think of Ellen.
When I hear spanish lyrics or play at AJ's water table, I think of Jennifer.
When I watch SYTYCD or make experience books for AJ, I think of Celeste.
When I see really, really, yummy chocolate or see mini-vans parked in handicapped parking spaces, I think of Jess.
When I see a Starbucks or any type of stuffed bunny, I think of Melanie.
We all read whats going on it one another's lives. We read, comment, cry, laugh, and cheer each other on. With all the negativity you can find in this great landscape called the Internet...I've sure found some positives.
Subscribe to:
Comments (Atom)
