Comments on: The Language of Support: Special Needs Style http://prayingforparker.com/the-language-of-support-special-needs-style/ Raising a Special Needs Kid in a Typical World Tue, 22 May 2012 12:52:23 +0000 hourly 1 http://wordpress.org/?v=3.3.2 By: KDL http://prayingforparker.com/the-language-of-support-special-needs-style/comment-page-1/#comment-435433 KDL Tue, 16 Mar 2010 06:17:03 +0000 http://www.prayingforparker.com/?p=2338#comment-435433 I think one of the most important things that people who want to be supportive need to know is that when one most needs support one may be least able to say what they need. In our own situation the first six months of our twins' lives leading up to their older sister's diagnosis with ASD were some of the most challenging days I can remember - emotionally, financially, logistically we were beside ourselves, and literally unable to think further than a day or two ahead. People who said, "Let us know if you need anything," were least helpful. People who showed up on our doorstep with dinner in hand were God-sends. Others who offered to sit with the twins while we went to meeting after meeting, etc. were amazing. We are now trying to support another family in an equally trying time. I get them talking about what they're struggling with and then I say, "OK let me do that for you." A couple of times I have just brought them food, figuring they could freeze it if they didn't need to eat it immediately. It feels somewhat intrusive, and yet they are so grateful for help being given without having to think about what to ask. I think one of the most important things that people who want to be supportive need to know is that when one most needs support one may be least able to say what they need. In our own situation the first six months of our twins’ lives leading up to their older sister’s diagnosis with ASD were some of the most challenging days I can remember – emotionally, financially, logistically we were beside ourselves, and literally unable to think further than a day or two ahead. People who said, “Let us know if you need anything,” were least helpful. People who showed up on our doorstep with dinner in hand were God-sends. Others who offered to sit with the twins while we went to meeting after meeting, etc. were amazing. We are now trying to support another family in an equally trying time. I get them talking about what they’re struggling with and then I say, “OK let me do that for you.” A couple of times I have just brought them food, figuring they could freeze it if they didn’t need to eat it immediately. It feels somewhat intrusive, and yet they are so grateful for help being given without having to think about what to ask.

]]> By: mm http://prayingforparker.com/the-language-of-support-special-needs-style/comment-page-1/#comment-433399 mm Sat, 06 Mar 2010 14:44:58 +0000 http://www.prayingforparker.com/?p=2338#comment-433399 While I do not face the health issues inside my family as you do, we all have days where we just need a friend. I have such a friend who is there when I need her. And when either of us are having a crappy day, we can call the other and say "Let's go for tea." Sometimes nothing can be done to help the other, no magic words can be found. But just sitting there and drinking tea and having a friend listen is all the support we need. While I do not face the health issues inside my family as you do, we all have days where we just need a friend. I have such a friend who is there when I need her. And when either of us are having a crappy day, we can call the other and say “Let’s go for tea.” Sometimes nothing can be done to help the other, no magic words can be found. But just sitting there and drinking tea and having a friend listen is all the support we need.

]]> By: Janet/kadiera http://prayingforparker.com/the-language-of-support-special-needs-style/comment-page-1/#comment-433157 Janet/kadiera Fri, 05 Mar 2010 00:08:02 +0000 http://www.prayingforparker.com/?p=2338#comment-433157 * What do you find that helps you through the rocky times? Friends - both online and local. Faith. Alex's smile. Looking back at the early pictures and seeing how far we've come. * What was something a friend did that although maybe very simple, touched your heart in a way you’ll never forget. A good friend came and sat with me one night a few days after Alex's birth because we'd gotten some really scary news on top of the premature birth and my own illness, and I didn't want to talk to anyone, I just wanted to be left alone. He came and just sat with his arms around me until I was ready to talk, even though he didn't actually know the news we'd been given. * What would you like to be able to explain to others about your life with a child with special needs? That it is both easier and harder than they believe. I think people think this life is hard - and it is at times - but most of the time, it's no harder than any other family. But some things they assume are easy for everyone are not easy for us. Just leaving the house is a challenge, much less getting back out of the car to do something. Scheduling 10 therapy sessions a week and appointments with 5 doctors is downright painful. And so on and so forth.... * What do you find that helps you through the rocky times?

Friends – both online and local. Faith. Alex’s smile. Looking back at the early pictures and seeing how far we’ve come.

* What was something a friend did that although maybe very simple, touched your heart in a way you’ll never forget.

A good friend came and sat with me one night a few days after Alex’s birth because we’d gotten some really scary news on top of the premature birth and my own illness, and I didn’t want to talk to anyone, I just wanted to be left alone. He came and just sat with his arms around me until I was ready to talk, even though he didn’t actually know the news we’d been given.

* What would you like to be able to explain to others about your life with a child with special needs?

That it is both easier and harder than they believe. I think people think this life is hard – and it is at times – but most of the time, it’s no harder than any other family. But some things they assume are easy for everyone are not easy for us. Just leaving the house is a challenge, much less getting back out of the car to do something. Scheduling 10 therapy sessions a week and appointments with 5 doctors is downright painful. And so on and so forth….

]]> By: Chris http://prayingforparker.com/the-language-of-support-special-needs-style/comment-page-1/#comment-433154 Chris Thu, 04 Mar 2010 23:45:19 +0000 http://www.prayingforparker.com/?p=2338#comment-433154 My support system was pretty rocky, even inside my home, and there were alot of cultural issues with the other side of the family to deal with. I hated any discussion of 'the rest of your life..'. Who really knows what will happen the rest of their lives? Really? I also hated people who had no particular insight telling me what a blessing she would be. When you're upset, that just makes you feel worse. If it's a blessing, you should overjoyed, right? What helped were people that put it into perspective- the ones that showed us that life really did go on (no pun intended). We had friends w/ an adult daughter w/ CP. He said to us matter of factly 'this is far from the worst thing that will ever happen to you'. He was so right. I also loved my sister's genuine response. She came into the room knowing Nana had been born, but not that she had DS. Nana had been transfered to a different hospital the night before for a NICU. I told my sister about the DS and she said 'so she's not HERE?' Her only disappointment was that she couldn't see her new neice. The DS didn't matter a bit. In those first days, it's important to call and not avoid the person. But, after taking call after call of 'it's a blessing' and 'she's lucky to have you' (blech), I took a call from a friend who is very Catholic. I thought I would be in for it, but she said something I'll never forget. She was crying (literally) when she called, but her first statement was 'I'm not sorry that she's here, but I am sorry that this is so hard right now'. I LOVED that statement and have planned to use it if I'm ever in that situation, because it was just perfect. Sorry so long winded- great topic :) CHris My support system was pretty rocky, even inside my home, and there were alot of cultural issues with the other side of the family to deal with. I hated any discussion of ‘the rest of your life..’. Who really knows what will happen the rest of their lives? Really? I also hated people who had no particular insight telling me what a blessing she would be. When you’re upset, that just makes you feel worse. If it’s a blessing, you should overjoyed, right?

What helped were people that put it into perspective- the ones that showed us that life really did go on (no pun intended). We had friends w/ an adult daughter w/ CP. He said to us matter of factly ‘this is far from the worst thing that will ever happen to you’. He was so right. I also loved my sister’s genuine response. She came into the room knowing Nana had been born, but not that she had DS. Nana had been transfered to a different hospital the night before for a NICU. I told my sister about the DS and she said ‘so she’s not HERE?’ Her only disappointment was that she couldn’t see her new neice. The DS didn’t matter a bit.

In those first days, it’s important to call and not avoid the person. But, after taking call after call of ‘it’s a blessing’ and ‘she’s lucky to have you’ (blech), I took a call from a friend who is very Catholic. I thought I would be in for it, but she said something I’ll never forget. She was crying (literally) when she called, but her first statement was ‘I’m not sorry that she’s here, but I am sorry that this is so hard right now’. I LOVED that statement and have planned to use it if I’m ever in that situation, because it was just perfect.

Sorry so long winded- great topic :)
CHris

]]> By: Cody http://prayingforparker.com/the-language-of-support-special-needs-style/comment-page-1/#comment-433152 Cody Thu, 04 Mar 2010 23:28:22 +0000 http://www.prayingforparker.com/?p=2338#comment-433152 Several days ago, we received an invitation in the mail to attend a free evening of activities at our local skating rink and fun center. Students from one of our local high schools had made arrangements to rent the entire facility exclusively for kids with Down syndrome and their families. There are so many positives from this kind of interaction. The high school students learn to serve and in the process, dispel for themselves many myths associated with disability. The special-needs children get to call something their own and interact with others with whom they share not only the same age, but often times, the same skill levels. For parents, activities that keep their children occupied offer a much needed break and a casual environment to speak with others parents. They swap phone numbers, advice and potty training war stories. It’s a win, win, win! Several days ago, we received an invitation in the mail to attend a free evening of activities at our local skating rink and fun center. Students from one of our local high schools had made arrangements to rent the entire facility exclusively for kids with Down syndrome and their families.

There are so many positives from this kind of interaction. The high school students learn to serve and in the process, dispel for themselves many myths associated with disability. The special-needs children get to call something their own and interact with others with whom they share not only the same age, but often times, the same skill levels. For parents, activities that keep their children occupied offer a much needed break and a casual environment to speak with others parents. They swap phone numbers, advice and potty training war stories. It’s a win, win, win!

]]> By: Emily http://prayingforparker.com/the-language-of-support-special-needs-style/comment-page-1/#comment-433119 Emily Thu, 04 Mar 2010 16:49:16 +0000 http://www.prayingforparker.com/?p=2338#comment-433119 You know... finding out the way I did was a little different. With him being 6 months of age and being told he didn't have Down syndrome over and over again, when in fact I KNEW he had it was hard. Those 6 months were long and hard. Once we got the "positive", I couldn't have done it with out my family and friends. They are the ones I turned to when I was scared and frustrated. Honestly though... all I have to do is look at his angelic face and everything is ok. I'll never forget meeting my first friend with a child with Down syndrome. She said, "Let people love him. Let people hold him and hug him. They need it and so do you." I cherish that. It truly helped. He lifts everyone's spirits and when I see that, it lifts mine when needed! You know… finding out the way I did was a little different. With him being 6 months of age and being told he didn’t have Down syndrome over and over again, when in fact I KNEW he had it was hard. Those 6 months were long and hard. Once we got the “positive”, I couldn’t have done it with out my family and friends. They are the ones I turned to when I was scared and frustrated. Honestly though… all I have to do is look at his angelic face and everything is ok.
I’ll never forget meeting my first friend with a child with Down syndrome. She said, “Let people love him. Let people hold him and hug him. They need it and so do you.” I cherish that. It truly helped. He lifts everyone’s spirits and when I see that, it lifts mine when needed!

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