We have all heard about the good of "staying in the moment". When we stay in the moment, we become more aware and when we are more aware, we get more from the task at hand. As much as this is true, we all need something to look forward to as well.
This thought came to me as I took Lindsay out to the van for her day program this morning. Every morning for the last couple of months, one of the guys has told me exactly how many days it was until he went to Disneyland. The concept of time may have been hard to understand but he definitely knew how many more days and he was so excited about going to California and that he might not come back because he liked it so much. Well, he just came back this week and on Tuesday morning, I opened the van and he didn't say a word. He was in the back of the van, head down and not a word when I said hello. I immediately knew that he was probably down, like we all are when we come home from a vacation. Today, however, I looked in to say hi and he told he was going to Denver! His excitement was back! I don't know the countdown yet, but I am sure he will keep me informed!
In her own way, Lindsay is the same. Her ability to countdown the days or have a concept of time isn't there but she is the first to inform people that she gets to "go to the store" when she gets home or when she gets to "go papas" or to see "my connie" or go "get burgers"!
As much as our kids with special needs can stay in the moment, they also like all of us, enjoy having something to look forward to. It puts a little more bounce in their step!
Thursday, September 30, 2010
Thursday, September 23, 2010
Wish I could let it go like Lindsay!
Two blogs in one week! Just had to write about how I was feeling today!
We went to Target to spend a birthday gift card Lindsay received. Just so you know, she went straight for the purses! She knew exactly what she wanted.....SOLD! She had some remaining funds on her gift card so we shopped around the store and was in the "paper" isle when two high school aged girls came around the corner. They seemed to have a whip lash turning around to inspect Lindsay as we walked by. It was if I was watching in slow motion, wanting to react but was frozen. I am not usually affected by this but today, they giggled at her, talked in a whisper and went on their way.
Long ago I realized that when people aren't informed, they act out of fear or insecurity. While Lindsay attended high school here in town, we had an awesome experience with the students at school. Lindsay's peer companions learned from her and she from them. It was heartwarming and endearing. Today, I experienced something I haven't seen in awhile and maybe that is why I was so dumbfounded, unable to speak out and say anything. I can think of plenty I would like to have said but then, it would have fallen on deaf ears too.
That is why, I wish I could let it go like Lindsay. She never holds a grudge, she forgives, she loves and doesn't judge. She looked at the girls too and I wonder what she thought. She has excellent intuition and probably thought they didn't deserve another glance and whatever her thoughts, she continued walking to find the "papers" she so loves and didn't let it take one more second thought! Something I need to do!
We went to Target to spend a birthday gift card Lindsay received. Just so you know, she went straight for the purses! She knew exactly what she wanted.....SOLD! She had some remaining funds on her gift card so we shopped around the store and was in the "paper" isle when two high school aged girls came around the corner. They seemed to have a whip lash turning around to inspect Lindsay as we walked by. It was if I was watching in slow motion, wanting to react but was frozen. I am not usually affected by this but today, they giggled at her, talked in a whisper and went on their way.
Long ago I realized that when people aren't informed, they act out of fear or insecurity. While Lindsay attended high school here in town, we had an awesome experience with the students at school. Lindsay's peer companions learned from her and she from them. It was heartwarming and endearing. Today, I experienced something I haven't seen in awhile and maybe that is why I was so dumbfounded, unable to speak out and say anything. I can think of plenty I would like to have said but then, it would have fallen on deaf ears too.
That is why, I wish I could let it go like Lindsay. She never holds a grudge, she forgives, she loves and doesn't judge. She looked at the girls too and I wonder what she thought. She has excellent intuition and probably thought they didn't deserve another glance and whatever her thoughts, she continued walking to find the "papers" she so loves and didn't let it take one more second thought! Something I need to do!
Tuesday, September 21, 2010
Lindsay's mind and her stresses
Last weekend Jerry and I went away for the weekend, thanks to our respite provider, Kelli! ( yes, another Kelli, with an "i") Having her stay with Lindsay allows us to go away without worrying about Lindsay. She works with her on a daily basis, knows her little habits, her likes and dislikes, shows compassion and care. Lindsay loves her and her family and has a great time with her, which is a very comforting feeling for us when family isn't staying with her.
Lately, we have learned that we don't talk about us going away, too far in advance in front of Lindsay. Long ago, we realized she understands more than we give her credit for and when she listens, she understands. She doesn't understand the concept of time but understands that mom and dad are going bye-bye and she isn't! She doesn't quite like that idea and I don't blame her! Not any fun when you have to stay home while someone else gets to go play. We love her so much but need that time by ourselves too!
When she starts thinking of us not being home, her mind starts going and going....like the energizer bunny. We see her sleep pattern go crazy, her organization skills go to the extreme and sometimes her seizures appear. It is frustrating for us as it adds worries for us as well. Should we go, should we stay, how do we comfort her mind, should we burden others with our situation? So many worries and stresses all around.
She worries about who is staying, where she is going, who is taking care of Babygrr, where is Taylor, when will we be home, who will wash her pajamas ( she loves her pajamas!) and more that we don't even know about! Her tv is usually on late at night and so is she, as she organizes her purses and papers over and over, as if that is her only control. Lately, she seems to be handling the upcoming change in her routine better but I know her mind is thinking constantly. To us, these worries of hers seem so little but to her, her world has being turned in different directions. We provide a safe and loving environment for her and when her routine changes, so does her comfort and her world as she knows it.
When we returned this past weekend, we didn't get the hug or the excitement in our return....instead, she was very serious, quiet and very focused. She sat on the couch and organized her paper, her coupons she cuts every Sunday morning for over two hours. I think it was her way of telling us, she was pretty pissed at us for leaving and wasn't in the mood to pick up where we left off! Then all of a sudden, like a light switch was turned on, she was back to Lindsay, happy and engaging.
I read a article in the Oprah Magazine lately about when things aren't going your way and nothing is working, to do nothing.....to relax, to rest and let those comfort feelings come back to you. I guess that was what Lindsay did. Her world over the weekend changed, her routine changed.....she relaxed with her comfort of purses and papers and rested until she was ready to realize that the normal comfort she feels at home with us was back and all was ok.
Then this brings up the concern for us......what do we do, how do we handle her long term comfort?.....a subject to visit later!
Lately, we have learned that we don't talk about us going away, too far in advance in front of Lindsay. Long ago, we realized she understands more than we give her credit for and when she listens, she understands. She doesn't understand the concept of time but understands that mom and dad are going bye-bye and she isn't! She doesn't quite like that idea and I don't blame her! Not any fun when you have to stay home while someone else gets to go play. We love her so much but need that time by ourselves too!
When she starts thinking of us not being home, her mind starts going and going....like the energizer bunny. We see her sleep pattern go crazy, her organization skills go to the extreme and sometimes her seizures appear. It is frustrating for us as it adds worries for us as well. Should we go, should we stay, how do we comfort her mind, should we burden others with our situation? So many worries and stresses all around.
She worries about who is staying, where she is going, who is taking care of Babygrr, where is Taylor, when will we be home, who will wash her pajamas ( she loves her pajamas!) and more that we don't even know about! Her tv is usually on late at night and so is she, as she organizes her purses and papers over and over, as if that is her only control. Lately, she seems to be handling the upcoming change in her routine better but I know her mind is thinking constantly. To us, these worries of hers seem so little but to her, her world has being turned in different directions. We provide a safe and loving environment for her and when her routine changes, so does her comfort and her world as she knows it.
When we returned this past weekend, we didn't get the hug or the excitement in our return....instead, she was very serious, quiet and very focused. She sat on the couch and organized her paper, her coupons she cuts every Sunday morning for over two hours. I think it was her way of telling us, she was pretty pissed at us for leaving and wasn't in the mood to pick up where we left off! Then all of a sudden, like a light switch was turned on, she was back to Lindsay, happy and engaging.
I read a article in the Oprah Magazine lately about when things aren't going your way and nothing is working, to do nothing.....to relax, to rest and let those comfort feelings come back to you. I guess that was what Lindsay did. Her world over the weekend changed, her routine changed.....she relaxed with her comfort of purses and papers and rested until she was ready to realize that the normal comfort she feels at home with us was back and all was ok.
Then this brings up the concern for us......what do we do, how do we handle her long term comfort?.....a subject to visit later!
Sunday, September 12, 2010
September 11th
Yesterday I awoke and thought of Lindsay. September 11th is her birthday and it is also a date that holds so much emotion from nine years ago!
At 7 am in the morning, nine years ago, I was driving to play golf and on the car radio heard that a plane had flown into one of the Twin Towers. I vividly remember stopping at a traffic light, looking over to the woman in the car next to me, who was obviously listening to the same thing. I think we were both thinking, "WHAT! Say that again! " When I arrived at the golf course, everyone was watching the news and I recall the terror and disbelief in everyones faces. We didn't know then that it was not just an accident but a terrorist attack on our nation. Amazing that I remember so many aspects of that day, where I was at specific moments, talking to Taylor when he came home from school and going to bed feeling like I wanted to wake from a dream. Thankfully, we had celebrated Lindsay's 16th birthday with a party in our backyard the previous weekend, otherwise any celebration for her on the 11th may not have happened!
At 7 am in the morning of September 11th, 1985, 25 years ago, I was in labor! Lindsay was two weeks late and Jerry and I had arrived at the hospital the previous evening so that my labor could be induced. At 3:36 the following afternoon, Lindsay Rae was born into the world! When I first held her, with her head full of dark hair and big blue eyes, our dreams for her began and we welcomed her with love and kisses. Our world as first time parents was just beginning too! Learning to breast feed, late night rocking to lullabye songs, bath time and diaper time, it was part of something we had been planning on for 9 months! Everything seemed ok at first but as time went on, little things about Lindsay were different from others her age. Slight differences at first but more noticable as the standard milestones of developement were not achieved.
A medical diagnosis was not given until much later, but our world was thrown upside down when we found out that our dreams for our little girl may not be what we had hoped for. It was like planning for an extensive trip to Italy, doing all the research, planning, reading on your intended trip to Italy but then being told that we were landing in Norway instead. All of a sudden, our world looked a little different!
In retrospect, different hasn't been so bad. Yes, we would give anything if things were different for her, for us and we would love to see Lindsay achieve all those dreams we had for her. But on September 11, 1985, Lindsay was born and she has taught us things that we would not have experienced otherwise.
So, for the date, September 11th, we honor the lives that were lost in the horrific tragedy of 9-11 and also celebrate Lindsay, the fact that "she lights up a room with her smile, she brings sunshine to cloudy days and she spreads joy wherever she goes", words taken from a card she received. We love you, our Lindsay Rae! Thank you for teaching us to enjoy the little things, to be patient, loving and kind.
At 7 am in the morning, nine years ago, I was driving to play golf and on the car radio heard that a plane had flown into one of the Twin Towers. I vividly remember stopping at a traffic light, looking over to the woman in the car next to me, who was obviously listening to the same thing. I think we were both thinking, "WHAT! Say that again! " When I arrived at the golf course, everyone was watching the news and I recall the terror and disbelief in everyones faces. We didn't know then that it was not just an accident but a terrorist attack on our nation. Amazing that I remember so many aspects of that day, where I was at specific moments, talking to Taylor when he came home from school and going to bed feeling like I wanted to wake from a dream. Thankfully, we had celebrated Lindsay's 16th birthday with a party in our backyard the previous weekend, otherwise any celebration for her on the 11th may not have happened!
At 7 am in the morning of September 11th, 1985, 25 years ago, I was in labor! Lindsay was two weeks late and Jerry and I had arrived at the hospital the previous evening so that my labor could be induced. At 3:36 the following afternoon, Lindsay Rae was born into the world! When I first held her, with her head full of dark hair and big blue eyes, our dreams for her began and we welcomed her with love and kisses. Our world as first time parents was just beginning too! Learning to breast feed, late night rocking to lullabye songs, bath time and diaper time, it was part of something we had been planning on for 9 months! Everything seemed ok at first but as time went on, little things about Lindsay were different from others her age. Slight differences at first but more noticable as the standard milestones of developement were not achieved.
A medical diagnosis was not given until much later, but our world was thrown upside down when we found out that our dreams for our little girl may not be what we had hoped for. It was like planning for an extensive trip to Italy, doing all the research, planning, reading on your intended trip to Italy but then being told that we were landing in Norway instead. All of a sudden, our world looked a little different!
In retrospect, different hasn't been so bad. Yes, we would give anything if things were different for her, for us and we would love to see Lindsay achieve all those dreams we had for her. But on September 11, 1985, Lindsay was born and she has taught us things that we would not have experienced otherwise.
So, for the date, September 11th, we honor the lives that were lost in the horrific tragedy of 9-11 and also celebrate Lindsay, the fact that "she lights up a room with her smile, she brings sunshine to cloudy days and she spreads joy wherever she goes", words taken from a card she received. We love you, our Lindsay Rae! Thank you for teaching us to enjoy the little things, to be patient, loving and kind.
Tuesday, September 7, 2010
It's going to be a good day!
It's Tuesday after Labor Day weekend and like everyone else, Lindsay wasn't real thrilled with returning to "homework", her day program. The normal routine of seeing Dad go to work on Monday morning and a day home with mom had been thrown off. In true Lindsay fashion though, she got up with a smile, slowly got dressed, brushed her teeth, hugged Grr and gathered her purses, yes, purses, ready for the day!
Even for me, the day came early and having an extra day to relax was nice. We were all slower this morning but no matter my mood, it changes when I open the door to the van and see it full of happy faces! Always smiling and ready for their day too! There is Tim, (names have been changed for privacy purposes) who gets out and opens the door for Lindsay with a smile and tells me that "yep, I still have my girlfriend". A big hand reaches out to shake mine every morning, and James asks me how I am doing and then tells me that he would really like to ask Lindsay out on a date, that I should think about it and more importantly, that it is 17 more days until he leaves for California and Disneyland. He then adds that he has written a song and will put it on a CD! I think I would really like to listen to that song. I didn't notice his knitting today, which he usually is working on diligently. He tells me he hasn't decided what he is making yet though. :)
Then there is Tony who loves sports, always tells me what team wins and loses and asked if Lindsay could come spend the night sometime. He told me another friend we know, a boy, did last weekend. I told him that it was nice of him to ask but Lindsay is a girl. He promptly responded, "oh ya, no girls allowed"!
Lindsay gets in, passes by Cindy, who she knocks in the head with her arm full of purses. Never a peep, just a smile and a sweet hello. I tell Lindsay I love her and will see her when she gets home. She is more excited that we will go get Grr treats at the store later. I look in to say goodbye to everyone else, and get waves for the day and I tell them to have a good day. James jokingly tells me "maybe I will, maybe I won't", with a big smile and proud of his sense of humor. I close the door and think to myself, "it's going to be a good day". How could it not be, all of you have started mine off with a smile and chuckle to my heart.
Even for me, the day came early and having an extra day to relax was nice. We were all slower this morning but no matter my mood, it changes when I open the door to the van and see it full of happy faces! Always smiling and ready for their day too! There is Tim, (names have been changed for privacy purposes) who gets out and opens the door for Lindsay with a smile and tells me that "yep, I still have my girlfriend". A big hand reaches out to shake mine every morning, and James asks me how I am doing and then tells me that he would really like to ask Lindsay out on a date, that I should think about it and more importantly, that it is 17 more days until he leaves for California and Disneyland. He then adds that he has written a song and will put it on a CD! I think I would really like to listen to that song. I didn't notice his knitting today, which he usually is working on diligently. He tells me he hasn't decided what he is making yet though. :)
Then there is Tony who loves sports, always tells me what team wins and loses and asked if Lindsay could come spend the night sometime. He told me another friend we know, a boy, did last weekend. I told him that it was nice of him to ask but Lindsay is a girl. He promptly responded, "oh ya, no girls allowed"!
Lindsay gets in, passes by Cindy, who she knocks in the head with her arm full of purses. Never a peep, just a smile and a sweet hello. I tell Lindsay I love her and will see her when she gets home. She is more excited that we will go get Grr treats at the store later. I look in to say goodbye to everyone else, and get waves for the day and I tell them to have a good day. James jokingly tells me "maybe I will, maybe I won't", with a big smile and proud of his sense of humor. I close the door and think to myself, "it's going to be a good day". How could it not be, all of you have started mine off with a smile and chuckle to my heart.
Wednesday, September 1, 2010
My Bobby 13
On August 30th, Lindsay's brother, Taylor turned 21! She says "My Bobby 13"though.
There is a four year difference between them and she is the oldest. From day one of meeting him, she loved her "bobby"! She took the role of big sister very seriously, wanting to help bathe him, feed him, hold him and love him. I still vividly remember the day when Taylor was one week old. Jerry and I were in the kitchen and we heard this call, "ma". We went to the stairs to see her holding Taylor with her arm around his neck. Jerry and I looked at each other and simultaneously thought, "how did she get him out of his crib"? His little body was dangling, with his head held firmly in her arm. He wasn't crying and she had the proudest grin! She must have felt he needed our attention. To this day, we don't know how she managed to climb up into the crib, get him and get out of the crib! Yikes, the thought still scares me. Over the next few years, he watched and learned from her and she did the same.
It was when Taylor started talking that we noticed a change in her vocabulary. At that time too, we had started trying some sign language to help her express her needs and of course, Taylor learned some as well. They were buddies. Taylor called her Dede and she called him Tay. As time went along, Taylor seemed to know that Dede wasn't able to do some things and that she wasn't talking like he did. He showed patience and acceptance even at a young age and I know that although his mind wondered why, he seemed to know that Lindsay was who she was and loved her!
Taylor became involved in sports and Lindsay, one of his biggest fans. He also supported her as well when she played in the Challenger Baseball league. As many ball games as she has attended, she never hardly complained, except for a few times when she said, "no ball", as in, not another one! Nevertheless, she watched him in cold weather, hot weather, in sweaty gyms, in grassy fields, from golf carts to bleachers. She has been there, cheering him on! We played golf yesterday to celebreate with Taylor and Lindsay was there cheering him on! "yeah Bobby, get the ball.....oh, my Bobby"! If the video downloads correctly below, it is Taylor warming up to pitch in a game with Lindsay cheering in the background....."Oh,my Bobby"!
There is a four year difference between them and she is the oldest. From day one of meeting him, she loved her "bobby"! She took the role of big sister very seriously, wanting to help bathe him, feed him, hold him and love him. I still vividly remember the day when Taylor was one week old. Jerry and I were in the kitchen and we heard this call, "ma". We went to the stairs to see her holding Taylor with her arm around his neck. Jerry and I looked at each other and simultaneously thought, "how did she get him out of his crib"? His little body was dangling, with his head held firmly in her arm. He wasn't crying and she had the proudest grin! She must have felt he needed our attention. To this day, we don't know how she managed to climb up into the crib, get him and get out of the crib! Yikes, the thought still scares me. Over the next few years, he watched and learned from her and she did the same.
It was when Taylor started talking that we noticed a change in her vocabulary. At that time too, we had started trying some sign language to help her express her needs and of course, Taylor learned some as well. They were buddies. Taylor called her Dede and she called him Tay. As time went along, Taylor seemed to know that Dede wasn't able to do some things and that she wasn't talking like he did. He showed patience and acceptance even at a young age and I know that although his mind wondered why, he seemed to know that Lindsay was who she was and loved her!
Taylor became involved in sports and Lindsay, one of his biggest fans. He also supported her as well when she played in the Challenger Baseball league. As many ball games as she has attended, she never hardly complained, except for a few times when she said, "no ball", as in, not another one! Nevertheless, she watched him in cold weather, hot weather, in sweaty gyms, in grassy fields, from golf carts to bleachers. She has been there, cheering him on! We played golf yesterday to celebreate with Taylor and Lindsay was there cheering him on! "yeah Bobby, get the ball.....oh, my Bobby"! If the video downloads correctly below, it is Taylor warming up to pitch in a game with Lindsay cheering in the background....."Oh,my Bobby"!
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