It all started with Gymboree. If you've never heard of Gymboree, picture a room filled with brightly colored play structures (toddler sized), brightly colored balls, brightly colored walls, and brightly colored parachutes. In this room, you will see parents and their children, primarily babies and toddlers. In my case, it all began with S when she was 7 months old. At that age, the reality was that she was never going to be doing back flips before she could walk, but there was one important component that was a potent elixir...other grown ups! This is a huge draw for most parents. When the kid's activities are also social time for the grown ups, it's a win-win!
From Gymboree came gymnastics, play & music classes, dance classes, day camps, swimming lessons, Girl Scouts, and piano lessons. We aren't alone! In households throughout our community, parents are busy encouraging exploration, skill development, and packing schedules of activities that require spreadsheets and color coded calendars to get through the day.
I've pretty much given S & K the chance to explore. I may have made the initial choices to see what they like or where their natural aptitudes lie. For S, she really enjoys dance and is beginning to find her niche in jazz dance, although she likes ballet, too. She likes Girl Scouts and is often up for trying new things. She is a talented artist and if I offer art classes, she will be happy to go. As always, things with K are slightly more complicated.
K has tried a variety of activities. We used to say that K would be happiest playing softball, while singing or playing an instrument, wearing a tutu. She wants to do it all. We want her to do it all, but I have learned that some things just aren't meant for her, no matter how much she wants it.
With her auditory processing disorder, she doesn't always hear what is around her as fast as it is delivered. She simply won't hear instructions, especially if they are given too quickly, and particularly when there are competing sounds jumbling up the process. This makes team sports very stressful, so we took softball and soccer off the list of activities. Golf? Possibly. Tennis? Maybe.
She seems to have an aptitude for music. From a young age, she could sing on key and keep a beat. So, when she wanted to dance like her big sister, it seemed like it would be a great fit. It was...until she wanted to try tap dancing! Tap dancing? My child who can't stand loud noise, plugs her ears with her fingers, and will avoid shopping in stores with loud music? She loved tapping, but when her teacher started telling her she had to practice at home, I knew something was up. Yeah, tapping really wasn't up her alley. Kind of like swimming, she was having a tough time getting her feet to do something different from her arms. Frankly, she looked like a marionette with someone else pulling the strings, arms and legs going different directions, floppy and loose...and I say that with all the love in the world. Thankfully, piano lessons have been wonderful. It's individual, only as loud as she plays, and suits her innate musical talents.
Girl Scouts has been an easy and constant activity for both girls. That is changing now, too. K is just not as mature as her peers and it is difficult for her to stay engaged in our activities when things are often just above her head, a little bit out of reach.
So, what to do? What to do? I asked some other parents with special needs kids what kinds of things their kids participate in. You know what they said? Most of them said karate or martial arts. Okkaayy. Do they play music in those classes? Can she wear a tutu? No? Well, we might give it a try anyway. I have a hard time picturing her with the discipline required in those classes. I have a hard time picturing her karate chopping her way through the world. On the other hand, we don't want her to be limited, so I can't cross it off the list until she's tried it.
Summer is coming soon and that is a great time to try new things, so we shall see what that brings. Maybe I can find her a pink karate outfit...
Tuesday, May 1, 2012
Wednesday, April 25, 2012
Girl Power
Both of my girls, S & K, are involved in Girl Scouts. Also, because I love to be involved with the things that they do, I have been the leader for each of their troops from the very beginning. Either that, or I'm a glutton for punishment, but I prefer to enjoy the experiences as often as I can. With S, we are in our 7th year; with K, it has been 5 years. I have learned many things through those years.
First, I've learned that I was never cut out to be a daycare provider or elementary school teacher. Many years ago, I had my palm read at the Sonoma County Fair (for my Santa Rosa friends, I know you'll remember the "psychic reader" at the edge of one of the exhibit halls, near the midway). She said, while looking intently at my palm, that I would definitely be in business for myself, with another woman, and we would be running a daycare. Bwaaahhaaaahhaaaa! The largest either of my troops has ever been was 17 girls. Generally, I average around 10. Let me tell you, those girls can give me more than a run for my money whether there are 17 or 10 or 6 or even 3. If you get nothing else from this entry, let the lesson be that one should never waste $5 on the palm reader at the fair. ;-)
More importantly, though, I have learned that these girls are really capable of many things. Yes, Girl Scouts is still about camping and badges and s'mores. I'm not that kind of leader, though. Well, I'm definitely a s'mores kind of leader and badges too, but camping? Not so much. That's okay because Girl Scouts is also about offering leadership opportunities to even the youngest of Girl Scouts. Among the many programs that have been available, I am privileged to have been able to start an ongoing discussion with them about the roles of girls and women in the world today.
From those discussions, it is inevitable that the topic of stereotypes is revisited over and over again. We've examined the images of girls and women in the media (photoshopping, anyone?) and what kinds of assumptions we all make when we encounter someone different from all of us. They have had very thoughtful discussions about people with disabilities and people who might look different, but really are just like them. They see K and are able to accept her (as far as I know). She doesn't always say the right thing or act in the "expected" way, but that doesn't seem to matter too much to them.
This year, as my 4th grade Junior Girl Scouts have explored these different topics, one thing has remained true: these girls are growing in a mindset that they can do anything! Isn't that great?!? Some of them want to be mothers, some of them want to be engineers, others want to be bankers or teachers or scientists or bakers. The point is that it seems like they have no idea that women ever had any limits. I love that.
They see themselves as smart, imaginative, creative, strong, and confident. They celebrate their own individual talents - encouraging one another and accepting one another - and then bring all of the personal strengths together to accomplish a common goal.
These girls inspire me. The Juniors have created a skit to bust a stereotype that "Cheerleaders are dumb." You know how they prove it? A math competition, boys against girls. The skit is not just the competition, but in it, the girls are smart enough to hire a coach to help them prepare. So what have they learned? How to look beyond a stereotype, how to creatively work together to create a skit, how to make a plan and execute it, how to work together and incorporate all of the different ideas, how to listen to each other, how to express their ideas, and when to compromise.
I wonder if I would be able to recognize all of their wonderful qualities and talents if I had not been working with them through Girl Scouts. Recently, someone said to me, "Is S still in Girl Scouts? Isn't she a little old for that?" Technically, no she's not; Girl Scouts has programs for girls all the way through high school. My response was something like, "No. There isn't a girl around that is too old to learn about herself and participate in so many great opportunities."
When they are all noted as the movers and shakers in this country from politics to business to moms, I can say that I knew them when...
Oh, and of course, there are the cookies, but that is an entire post all by itself.
First, I've learned that I was never cut out to be a daycare provider or elementary school teacher. Many years ago, I had my palm read at the Sonoma County Fair (for my Santa Rosa friends, I know you'll remember the "psychic reader" at the edge of one of the exhibit halls, near the midway). She said, while looking intently at my palm, that I would definitely be in business for myself, with another woman, and we would be running a daycare. Bwaaahhaaaahhaaaa! The largest either of my troops has ever been was 17 girls. Generally, I average around 10. Let me tell you, those girls can give me more than a run for my money whether there are 17 or 10 or 6 or even 3. If you get nothing else from this entry, let the lesson be that one should never waste $5 on the palm reader at the fair. ;-)
More importantly, though, I have learned that these girls are really capable of many things. Yes, Girl Scouts is still about camping and badges and s'mores. I'm not that kind of leader, though. Well, I'm definitely a s'mores kind of leader and badges too, but camping? Not so much. That's okay because Girl Scouts is also about offering leadership opportunities to even the youngest of Girl Scouts. Among the many programs that have been available, I am privileged to have been able to start an ongoing discussion with them about the roles of girls and women in the world today.
From those discussions, it is inevitable that the topic of stereotypes is revisited over and over again. We've examined the images of girls and women in the media (photoshopping, anyone?) and what kinds of assumptions we all make when we encounter someone different from all of us. They have had very thoughtful discussions about people with disabilities and people who might look different, but really are just like them. They see K and are able to accept her (as far as I know). She doesn't always say the right thing or act in the "expected" way, but that doesn't seem to matter too much to them.
This year, as my 4th grade Junior Girl Scouts have explored these different topics, one thing has remained true: these girls are growing in a mindset that they can do anything! Isn't that great?!? Some of them want to be mothers, some of them want to be engineers, others want to be bankers or teachers or scientists or bakers. The point is that it seems like they have no idea that women ever had any limits. I love that.
They see themselves as smart, imaginative, creative, strong, and confident. They celebrate their own individual talents - encouraging one another and accepting one another - and then bring all of the personal strengths together to accomplish a common goal.
These girls inspire me. The Juniors have created a skit to bust a stereotype that "Cheerleaders are dumb." You know how they prove it? A math competition, boys against girls. The skit is not just the competition, but in it, the girls are smart enough to hire a coach to help them prepare. So what have they learned? How to look beyond a stereotype, how to creatively work together to create a skit, how to make a plan and execute it, how to work together and incorporate all of the different ideas, how to listen to each other, how to express their ideas, and when to compromise.
I wonder if I would be able to recognize all of their wonderful qualities and talents if I had not been working with them through Girl Scouts. Recently, someone said to me, "Is S still in Girl Scouts? Isn't she a little old for that?" Technically, no she's not; Girl Scouts has programs for girls all the way through high school. My response was something like, "No. There isn't a girl around that is too old to learn about herself and participate in so many great opportunities."
When they are all noted as the movers and shakers in this country from politics to business to moms, I can say that I knew them when...
Oh, and of course, there are the cookies, but that is an entire post all by itself.
Monday, April 16, 2012
Miss Smarty Pants
Back in December, K was making out her Christmas list. Top on the list: Pixie Dust. She wanted Santa to bring her Pixie Dust. In our household, Santa makes an effort to bring one or two of the most important things on the list, but this was a tough one. However, I'm a smart girl! I concocted the pixie dust and Santa delivered it with a letter telling K how hard it was to get in touch with Tinker Bell and with a reminder that the pixie dust only works in Neverland, so don't try to fly at home.
I need to remember that although she has her challenges, K is much smarter than I am.
Her first response was that she could take the pixie dust to Disneyland RIGHT NOW and Tinker Bell would put the magic back in it so that they could fly together. Fortunately, we weren't going to Disneyland, so I was off the hook for that one.
A few months have passed and we did plan a trip to Disneyland over Spring Break. I was hoping that by now, K would have forgotten all about taking her pixie dust to Disneyland. That's how these things usually work with kids. Something that is ultra-important one day becomes a distant memory in a matter of days, weeks, or months.
Not so much this time. We gave K a new backpack to take on the trip and the very first thing she put in it was the bag of pixie dust. Darn it! However, as luck would have it, the night before we left, she was rearranging her backpack, took out the pixie dust and forgot to put it back in so it was left behind at home.
Whew! I'm off the hook!
Not so fast! She is a clever problem solver. No need to worry. She can just tell Tinker Bell that the pixie dust doesn't work and Tinker Bell will give her the magic and she can bring it home to practice her flying.
Uh oh.
So, being the tenacious person that I am, I am wracking my brain to figure out how to get around this one. Originally, I planned to tell a Cast Member at Disney about the pixie dust so Tinker Bell could give her the message that the pixie dust only works in Neverland. I decided to stick with that plan. The Cast Member said he would take care of it and when K approached Tinker Bell, the first thing Tink said was, "How did the pixie dust work out?" K said, "It doesn't work! I can't even fly!" I'm worried now because this is a big deal for K and I am hoping that Tink will come up with something clever because I clearly did not do a good enough job coaching the cast member.
Tink says, "Well, it's just for practice. Did you think a happy thought? What was your happy thought?"
K responds, "To fly with you."
Awwwwwww.....
It all worked out okay, but when we got home, the first thing Miss Smarty Pants did was get her pixie dust and sprinkle some on her head...just in case she took a trip to Neverland that night.
Gotta love the imagination! I hope I can keep a step ahead of her, but it is unlikely. I'm glad S went along with it, too. She really likes being part of the magic for K and it is a wonderful thing to see.
I need to remember that although she has her challenges, K is much smarter than I am.
Her first response was that she could take the pixie dust to Disneyland RIGHT NOW and Tinker Bell would put the magic back in it so that they could fly together. Fortunately, we weren't going to Disneyland, so I was off the hook for that one.
A few months have passed and we did plan a trip to Disneyland over Spring Break. I was hoping that by now, K would have forgotten all about taking her pixie dust to Disneyland. That's how these things usually work with kids. Something that is ultra-important one day becomes a distant memory in a matter of days, weeks, or months.
Not so much this time. We gave K a new backpack to take on the trip and the very first thing she put in it was the bag of pixie dust. Darn it! However, as luck would have it, the night before we left, she was rearranging her backpack, took out the pixie dust and forgot to put it back in so it was left behind at home.
Whew! I'm off the hook!
Not so fast! She is a clever problem solver. No need to worry. She can just tell Tinker Bell that the pixie dust doesn't work and Tinker Bell will give her the magic and she can bring it home to practice her flying.
Uh oh.
So, being the tenacious person that I am, I am wracking my brain to figure out how to get around this one. Originally, I planned to tell a Cast Member at Disney about the pixie dust so Tinker Bell could give her the message that the pixie dust only works in Neverland. I decided to stick with that plan. The Cast Member said he would take care of it and when K approached Tinker Bell, the first thing Tink said was, "How did the pixie dust work out?" K said, "It doesn't work! I can't even fly!" I'm worried now because this is a big deal for K and I am hoping that Tink will come up with something clever because I clearly did not do a good enough job coaching the cast member.
Tink says, "Well, it's just for practice. Did you think a happy thought? What was your happy thought?"
K responds, "To fly with you."
Awwwwwww.....
It all worked out okay, but when we got home, the first thing Miss Smarty Pants did was get her pixie dust and sprinkle some on her head...just in case she took a trip to Neverland that night.
Gotta love the imagination! I hope I can keep a step ahead of her, but it is unlikely. I'm glad S went along with it, too. She really likes being part of the magic for K and it is a wonderful thing to see.
Thursday, April 12, 2012
42 days and counting...
I used to love school. As a child, I was an avid reader and loved school. As a teen, I was much more interested in social activities, but still, I loved school and worked hard to do my best. I have always wanted my children to have a love of learning and for the most part, they do.
Now? I'm not so fond of school. It seems as though the extraordinary effort I have made to see that K gets a proper education has had a significant impact on my feelings about school. Negative impact. No longer am I the one excited for the kids to go back to school. I am the one wishing vacation lasted a little bit longer. I am the one with the countdown on my calendar, marking off day by day until school is out for summer.
On the list of "things I need to do better," is accepting that this will not change and therefore, I should not let it get to me.
We were on vacation last week. I love vacation! Everyone loves vacations, I know. However, I think a lot of stay-at-home parents are excited when the kids go back to school after a break. Sometimes, too much togetherness just gets to be, well, too much. I get that, too. I am guessing that I am in the minority. I don't like it when my kids have to go back to school. Why? Because I know that we have to go back to all that comes with it.
For S, she will have homework and projects, as usual. With her, I get tired of the drudgery of the routine. Sometimes, I just want to take a day off with her. Or take her to breakfast and show up to school when we are ready. Instead, I got a truancy letter from the school a couple of weeks ago. It seems that S has missed 12 days of school in the 2nd trimester. 90% attendance is required, so she can go to Saturday School to make up her absences. Except that all of her absences are excused and half of them are the result of her injury last Fall. Needless to say, a call to the Vice Principal assured us that they are simply required by law to send those out and they know that S is doing fine and her absences were excused, but as long as she doesn't miss any more school this year, she will be at the required 90% attendance. Great. Child of mine, you better not get sick and we'll just have to forget about taking that Friday off to go away for a weekend, even though your grades are excellent and missing a day isn't going to change any of that. *sigh*
With K, in particular, it is like a big, black cloud comes to hang over my head. I know we are going back to day after day of homework, academic challenges, and for me, worry, worry, worry. As I've expressed before, this year has been particularly difficult, especially when it became clear that the teacher isn't fully committed to K's success. I live for Friday, when I know we won't have any homework. On the other hand, I get frustrated when K is not given the long term projects that other kids do. I'd take some of that extra work because I know how enriching those bigger projects are and because I believe in her ability to learn. I know it seems like I am contradicting myself. I am just trying to see that K gets the same opportunities as other children. I have expressed my commitment to helping her outside of school so that she can have those same opportunities. The point of her IEP is not to eliminate assignments, it is to modify them when necessary.
See? I quickly get sucked into the multi-facted, complicated situation we call "school."
It isn't going to change. Not really. So I need to change. I need to accept that this is what school is for now. Accept the cards I've been dealt for this year and hope that the next deal results in a better hand.
Fine. I'll suck it up. Why? Because there are only 42 school days left until Summer! I wasn't kidding about that calendar countdown...
Now? I'm not so fond of school. It seems as though the extraordinary effort I have made to see that K gets a proper education has had a significant impact on my feelings about school. Negative impact. No longer am I the one excited for the kids to go back to school. I am the one wishing vacation lasted a little bit longer. I am the one with the countdown on my calendar, marking off day by day until school is out for summer.
On the list of "things I need to do better," is accepting that this will not change and therefore, I should not let it get to me.
We were on vacation last week. I love vacation! Everyone loves vacations, I know. However, I think a lot of stay-at-home parents are excited when the kids go back to school after a break. Sometimes, too much togetherness just gets to be, well, too much. I get that, too. I am guessing that I am in the minority. I don't like it when my kids have to go back to school. Why? Because I know that we have to go back to all that comes with it.
For S, she will have homework and projects, as usual. With her, I get tired of the drudgery of the routine. Sometimes, I just want to take a day off with her. Or take her to breakfast and show up to school when we are ready. Instead, I got a truancy letter from the school a couple of weeks ago. It seems that S has missed 12 days of school in the 2nd trimester. 90% attendance is required, so she can go to Saturday School to make up her absences. Except that all of her absences are excused and half of them are the result of her injury last Fall. Needless to say, a call to the Vice Principal assured us that they are simply required by law to send those out and they know that S is doing fine and her absences were excused, but as long as she doesn't miss any more school this year, she will be at the required 90% attendance. Great. Child of mine, you better not get sick and we'll just have to forget about taking that Friday off to go away for a weekend, even though your grades are excellent and missing a day isn't going to change any of that. *sigh*
With K, in particular, it is like a big, black cloud comes to hang over my head. I know we are going back to day after day of homework, academic challenges, and for me, worry, worry, worry. As I've expressed before, this year has been particularly difficult, especially when it became clear that the teacher isn't fully committed to K's success. I live for Friday, when I know we won't have any homework. On the other hand, I get frustrated when K is not given the long term projects that other kids do. I'd take some of that extra work because I know how enriching those bigger projects are and because I believe in her ability to learn. I know it seems like I am contradicting myself. I am just trying to see that K gets the same opportunities as other children. I have expressed my commitment to helping her outside of school so that she can have those same opportunities. The point of her IEP is not to eliminate assignments, it is to modify them when necessary.
See? I quickly get sucked into the multi-facted, complicated situation we call "school."
It isn't going to change. Not really. So I need to change. I need to accept that this is what school is for now. Accept the cards I've been dealt for this year and hope that the next deal results in a better hand.
Fine. I'll suck it up. Why? Because there are only 42 school days left until Summer! I wasn't kidding about that calendar countdown...
Wednesday, March 28, 2012
Round Hole, Square Peg, Squiggly Lines
Do you remember that feeling from middle school when you just weren't sure where you fit? Or was that just me? I've experienced that same feeling many times over the course of the years, but never more so than I have as a parent.
In the past, I've been very open about the fact that it took us a long time and a lot of doctors to have our babies. Infertility is a wild, crazy, emotional roller coaster and for all the people that watched me go on that ride, can I just blame it on the hormones? I was crazy, irrational, and more than anything, just felt like I didn't fit in. Fortunately for me, I found a wonderful support system that made the journey easier and even better, I have two children to show for it. Still, it felt strange being so different from everyone else.
S arrived 5 weeks early by emergency c-section. No, I was not prepared for that. In fact, I wasn't prepared for much. I was smugly thinking that I would have my baby sometime around my due date and that I still had plenty of time, just like every other person I know. Whoops! S needed serious care and was transported across town to the Neonatal Intensive Care Unit. She was there for 18 days. It was an odd feeling. We would go there every day, more than once, to be with her. Here was our 35 week baby next to a bunch of 26, 27, 28 week babies. She didn't really look like a preemie, especially after she was untethered from IVs and the ventilator. Still, we were a family experiencing life with a sick newborn, just like everyone else. We were going home every day to an empty crib, an empty rocking chair, our empty arms. Except it felt different. It was almost like she wasn't "sick enough" to make us one of the crowd. We were invited to the NICU reunion later the following year and when we went, it felt very much like we didn't belong. No one knew us, not even the nurses or doctors. Our 18 days felt insignificant in that crowd, although for us, it was monumental. It was so strange because we really did experience many of the same things that every other family attending had experienced, but it wasn't "enough." We never went back.
With K, we have had many conversations over the years with each other and professionals about how she just doesn't fit in any "box." When she was in preschool, there was much discussion about whether or not she was autistic. Our journey to proper diagnoses has been more like a process of elimination. She's not autistic, she's not dyslexic, she's not ADHD, she's not apraxic, she doesn't have an articulation problem. This goes on and on. It is a constant challenge for us and for the school because there's no way to make a good prediction of her anticipated progress. Often, kids with a clear diagnosis - autism, dyslexia, sensory processing disorder, apraxia, speech articulation - are helped by a fairly consistent toolbox. Reach in, pull something out and it will likely be beneficial to the child. Certainly, every child is unique and may need a unique set of tools, but with a clear diagnosis, there is at least a place to start. K doesn't fit the profiles very well. She is, in her own extra-special way, a square peg trying to fit in the round hole. To help her often means that the best we can do is just keep throwing things her way, hoping something will stick.
As K's parent, I find myself trying to follow these strange squiggly lines. I want - need - to connect with other parents experiencing what I experience. When I think I have found something, I often look around and notice that while K most certainly is extra-special, we don't have nearly the same kinds of challenges that so many other families with extra-special kids are facing. She's not quite "impaired enough" compared to so many others. I still need the support, but just as I did in the NICU with S, I'm not sure I belong with these other parents who are struggling with so much more than I am. I am the one they will look at and think, "What are you complaining about? Try having an kid who is (fill in the blank with multiple diagnoses)!" I don't diminish their frustration; I believe it must be grueling to try and successfully parent a child with that many issues. On the other hand, I'm facing the same emotions, the same fears, the same frustrations, but I just don't quite fit in. I find myself being quiet about K's actual diagnosis. If letting someone think that my situation is more similar to theirs provides both of us the support we need, then so be it.
I am very grateful that my situation has never been "enough." I appreciate and have so much sympathy for the more severe situations many parents face. I am happy with my round hole, square peg, squiggly line life. I wouldn't want it any other way.
In the past, I've been very open about the fact that it took us a long time and a lot of doctors to have our babies. Infertility is a wild, crazy, emotional roller coaster and for all the people that watched me go on that ride, can I just blame it on the hormones? I was crazy, irrational, and more than anything, just felt like I didn't fit in. Fortunately for me, I found a wonderful support system that made the journey easier and even better, I have two children to show for it. Still, it felt strange being so different from everyone else.
S arrived 5 weeks early by emergency c-section. No, I was not prepared for that. In fact, I wasn't prepared for much. I was smugly thinking that I would have my baby sometime around my due date and that I still had plenty of time, just like every other person I know. Whoops! S needed serious care and was transported across town to the Neonatal Intensive Care Unit. She was there for 18 days. It was an odd feeling. We would go there every day, more than once, to be with her. Here was our 35 week baby next to a bunch of 26, 27, 28 week babies. She didn't really look like a preemie, especially after she was untethered from IVs and the ventilator. Still, we were a family experiencing life with a sick newborn, just like everyone else. We were going home every day to an empty crib, an empty rocking chair, our empty arms. Except it felt different. It was almost like she wasn't "sick enough" to make us one of the crowd. We were invited to the NICU reunion later the following year and when we went, it felt very much like we didn't belong. No one knew us, not even the nurses or doctors. Our 18 days felt insignificant in that crowd, although for us, it was monumental. It was so strange because we really did experience many of the same things that every other family attending had experienced, but it wasn't "enough." We never went back.
With K, we have had many conversations over the years with each other and professionals about how she just doesn't fit in any "box." When she was in preschool, there was much discussion about whether or not she was autistic. Our journey to proper diagnoses has been more like a process of elimination. She's not autistic, she's not dyslexic, she's not ADHD, she's not apraxic, she doesn't have an articulation problem. This goes on and on. It is a constant challenge for us and for the school because there's no way to make a good prediction of her anticipated progress. Often, kids with a clear diagnosis - autism, dyslexia, sensory processing disorder, apraxia, speech articulation - are helped by a fairly consistent toolbox. Reach in, pull something out and it will likely be beneficial to the child. Certainly, every child is unique and may need a unique set of tools, but with a clear diagnosis, there is at least a place to start. K doesn't fit the profiles very well. She is, in her own extra-special way, a square peg trying to fit in the round hole. To help her often means that the best we can do is just keep throwing things her way, hoping something will stick.
As K's parent, I find myself trying to follow these strange squiggly lines. I want - need - to connect with other parents experiencing what I experience. When I think I have found something, I often look around and notice that while K most certainly is extra-special, we don't have nearly the same kinds of challenges that so many other families with extra-special kids are facing. She's not quite "impaired enough" compared to so many others. I still need the support, but just as I did in the NICU with S, I'm not sure I belong with these other parents who are struggling with so much more than I am. I am the one they will look at and think, "What are you complaining about? Try having an kid who is (fill in the blank with multiple diagnoses)!" I don't diminish their frustration; I believe it must be grueling to try and successfully parent a child with that many issues. On the other hand, I'm facing the same emotions, the same fears, the same frustrations, but I just don't quite fit in. I find myself being quiet about K's actual diagnosis. If letting someone think that my situation is more similar to theirs provides both of us the support we need, then so be it.
I am very grateful that my situation has never been "enough." I appreciate and have so much sympathy for the more severe situations many parents face. I am happy with my round hole, square peg, squiggly line life. I wouldn't want it any other way.
Friday, March 23, 2012
A Happy Place
For me, one of the most difficult daily challenges of having any children, but especially an extra-special child is that I worry. I worry all. the. time. I may not be sitting around wallowing in it all day long, but it is there. It's in the back of my mind at all times. I participated in a rather spirited discussion online recently where the challenge put forth was, essentially, "Why do you think your kids have any more challenges than any other kid? What makes you think that you are so special?" Those weren't the exact questions, but the point was clear - parents of special needs kids are whiny and entitled and judgmental. I actually did give my response some thought beyond my initial "walk a mile in my moccasins" knee-jerk reaction. What do I think makes my situation different?
I am not naive. I have a really great life with a really great family. I do not think that my challenges are equal to the truly difficult situations that many families face. I have a roof over my head, clothes on my back, food on my table, a car in the garage and I don't ever have to worry about any of that being there each and every day. I am grateful for my life every single day. It is abundant in the most important ways and in many less important, but still very notable, ways.
However, the difference, I think, for me comes down to worry. I worry about S, just like any mother would. I worry that some dumb boy will break her heart (inevitable); I worry that she's going to make some horrible mistakes as she grows (likely - didn't we all?); I worry that her injury last Fall will have a lifelong impact on her (time will tell). What I don't worry about is her general future. I know she will graduate from high school, go to college, get a job, contribute to her community, find love. I may not know the exact details, but I can clearly see her future.
With K, I don't have that same luxury. I worry all the time about her future. I worry that she will never catch up to her peers in academics. I worry that her self-esteem will take a beating because she struggles in school in ways her peers never will. I worry that by the time she graduates from high school, she will be so burnt out by school that she won't go to college. I worry that even with her big heart, no one will take the time to see her and love her the way she deserves to be loved. I worry that I don't have the foggiest notion what her future will look like.
I need a break from the worry. Who doesn't? I worry too much and though I hate to admit it, I need to take a break. I need to find my happy place. For a long time, that place was church. For a couple of hours, once a week, we were just a normal family. I didn't have to worry what people thought of K or how she came across to them. Everyone there just loved her...and us...just as we are. When that started to change, when she was standing alongside the few other girls that were at church, I could no longer leave her differences at the door. My two hours a week of "I don't have to worry about her" time vanished. So, we changed churches. That wasn't the only reason, but it was one reason. It was a good change for us and once again, I could just enjoy my two hours on Sunday free from the worry. We were just "us" again.
Until last weekend. S & K went to training to serve as acolytes at church. They have done this at our previous church and really enjoy serving at the altar. K, especially, has been looking forward to this. Then, our marvelous priest - whom we really adore - set forth his expectations: you must sit still, you must not play with your acolyte robes, you must not look bored during the sermon. And just like that, POOF! I was right back to having to worry again.
I still have not decided exactly how I will handle it. Helicopter Mom in me says to call the priest, explain K's situation, ask for his patience, beg him not to "fire" her because it means so much to her. Rational Mom says to wait. See how she does. She often rises to the occasion when I least expect it. Either way, though, I've now got worry sitting there in the back of my head during those two sacred hours on Sunday.
And, in my typical overanalyzing way, I thought about this until it finally struck me that sometimes, in my own worry, I forget that I should have faith in K. Faith at church is particularly appropriate, don't you think? I short-change her by assuming things will go poorly instead of believing in her ability.
Once again, I realize that my extra-special child has enriched my life in more ways than I know. Worry keeps me in a negative place; faith puts me in a positive one. She reminds me how very important faith is and with that, I will always have my happy place.
I am not naive. I have a really great life with a really great family. I do not think that my challenges are equal to the truly difficult situations that many families face. I have a roof over my head, clothes on my back, food on my table, a car in the garage and I don't ever have to worry about any of that being there each and every day. I am grateful for my life every single day. It is abundant in the most important ways and in many less important, but still very notable, ways.
However, the difference, I think, for me comes down to worry. I worry about S, just like any mother would. I worry that some dumb boy will break her heart (inevitable); I worry that she's going to make some horrible mistakes as she grows (likely - didn't we all?); I worry that her injury last Fall will have a lifelong impact on her (time will tell). What I don't worry about is her general future. I know she will graduate from high school, go to college, get a job, contribute to her community, find love. I may not know the exact details, but I can clearly see her future.
With K, I don't have that same luxury. I worry all the time about her future. I worry that she will never catch up to her peers in academics. I worry that her self-esteem will take a beating because she struggles in school in ways her peers never will. I worry that by the time she graduates from high school, she will be so burnt out by school that she won't go to college. I worry that even with her big heart, no one will take the time to see her and love her the way she deserves to be loved. I worry that I don't have the foggiest notion what her future will look like.
I need a break from the worry. Who doesn't? I worry too much and though I hate to admit it, I need to take a break. I need to find my happy place. For a long time, that place was church. For a couple of hours, once a week, we were just a normal family. I didn't have to worry what people thought of K or how she came across to them. Everyone there just loved her...and us...just as we are. When that started to change, when she was standing alongside the few other girls that were at church, I could no longer leave her differences at the door. My two hours a week of "I don't have to worry about her" time vanished. So, we changed churches. That wasn't the only reason, but it was one reason. It was a good change for us and once again, I could just enjoy my two hours on Sunday free from the worry. We were just "us" again.
Until last weekend. S & K went to training to serve as acolytes at church. They have done this at our previous church and really enjoy serving at the altar. K, especially, has been looking forward to this. Then, our marvelous priest - whom we really adore - set forth his expectations: you must sit still, you must not play with your acolyte robes, you must not look bored during the sermon. And just like that, POOF! I was right back to having to worry again.
I still have not decided exactly how I will handle it. Helicopter Mom in me says to call the priest, explain K's situation, ask for his patience, beg him not to "fire" her because it means so much to her. Rational Mom says to wait. See how she does. She often rises to the occasion when I least expect it. Either way, though, I've now got worry sitting there in the back of my head during those two sacred hours on Sunday.
And, in my typical overanalyzing way, I thought about this until it finally struck me that sometimes, in my own worry, I forget that I should have faith in K. Faith at church is particularly appropriate, don't you think? I short-change her by assuming things will go poorly instead of believing in her ability.
Once again, I realize that my extra-special child has enriched my life in more ways than I know. Worry keeps me in a negative place; faith puts me in a positive one. She reminds me how very important faith is and with that, I will always have my happy place.
Tuesday, March 20, 2012
A Brief Pat On the Back
There is nothing more gratifying for a parent than when other adults compliment their kids. Yea me! I'm doing something right! When you spend all that time teaching "please," "thank you," "may I," "excuse me," and more time on offering someone your seat, addressing an adult with respect, etc., it's nice to know that your kids are actually doing those things out in public.
*For those friends that are reading this because they found it through the Shut Up About Your Perfect Kid! Facebook page or blog, please forgive me. I'm about to brag about my perfect kid. Please don't flog me or take away my membership card in The Movement of Imperfection club. Sometimes it is nice to wade in the perfect waters for just a few moments. ;-)
I've had some really great moments in the past few weeks that are so gratifying, they must be shared. You see, while K has enough charm to melt the heart of Jack Frost, S is more reserved, so people don't always see her warmth right away. She needs to take time to get comfortable, time to get to know someone, before she will let you in. Once she's comfortable, though, she is genuinely kind and thoughtful.
Exhibit A: S is participating in the American Cancer Society Relay for Life this year. After sending out the call for donations via my Facebook page, she immediately got a donation. When I told her about it, the very first thing she said was, "Wow! That's so great! I need to send a thank-you card." Hallelujah! She got there on her own and I didn't have to suggest that she send the thank-you note.
Exhibit B: Dropping S off at school late one day, due to a dental appointment, and the principal is in the office. First, he is concerned because she is late and wants to make sure she is okay. Once assured that it was only a dental appointment, he turns to me and says, "You have a great girl here. She is just so sweet and has such great manners. She's just great! Do you have any more like her?" This is followed by all the ladies in the office chiming in with their agreement and suggesting that they won't want her to leave after her 8th grade year next year, so maybe they could arrange to flunk her so she could stay. Well, no thanks on the flunking, but how great is it to know that S is leaving behind such a positive impression of herself? It's pretty great!
Exhibit C: S & K were riding bikes over the weekend and went to visit some friends in the neighborhood. These friends have adult children, not kids for S & K to play with, but these friends have always been kind and loving to my girls. I received a text from my friend saying, "...can't tell you how much I enjoyed them! Reminded me of our girls in their younger days and your kids have the best manners!"
Exhibit D (and yes, my imperfect friends, I am almost done): S noticed a new girl at school last week. She didn't hesitate to introduce herself and invite the new girl to have lunch with her and her friends. She wanted to make sure that the new girl met some nice people and didn't get into the "mean girls" crowd. While some of her other friends were more skeptical of reaching out to the new girl, she didn't even think twice. This may be the thing that makes me most proud of her. I didn't necessarily realize it, but I do think that having an extra-special sister has inherently taught S to give people a chance, don't judge quickly, and what you see is not always what you get.
It is one of my fondest wishes that she keeps that quality her whole life. I believe that having an extra-special kid in the family has taught us all to be more patient, more forgiving, more understanding, and far less quick to judge. Are we perfect at that all the time? Of course not, but when I see my girls exhibiting these qualities, I know that they will be well equipped with compassionate hearts to make the world around them better, even if in small ways.
*For those friends that are reading this because they found it through the Shut Up About Your Perfect Kid! Facebook page or blog, please forgive me. I'm about to brag about my perfect kid. Please don't flog me or take away my membership card in The Movement of Imperfection club. Sometimes it is nice to wade in the perfect waters for just a few moments. ;-)
I've had some really great moments in the past few weeks that are so gratifying, they must be shared. You see, while K has enough charm to melt the heart of Jack Frost, S is more reserved, so people don't always see her warmth right away. She needs to take time to get comfortable, time to get to know someone, before she will let you in. Once she's comfortable, though, she is genuinely kind and thoughtful.
Exhibit A: S is participating in the American Cancer Society Relay for Life this year. After sending out the call for donations via my Facebook page, she immediately got a donation. When I told her about it, the very first thing she said was, "Wow! That's so great! I need to send a thank-you card." Hallelujah! She got there on her own and I didn't have to suggest that she send the thank-you note.
Exhibit B: Dropping S off at school late one day, due to a dental appointment, and the principal is in the office. First, he is concerned because she is late and wants to make sure she is okay. Once assured that it was only a dental appointment, he turns to me and says, "You have a great girl here. She is just so sweet and has such great manners. She's just great! Do you have any more like her?" This is followed by all the ladies in the office chiming in with their agreement and suggesting that they won't want her to leave after her 8th grade year next year, so maybe they could arrange to flunk her so she could stay. Well, no thanks on the flunking, but how great is it to know that S is leaving behind such a positive impression of herself? It's pretty great!
Exhibit C: S & K were riding bikes over the weekend and went to visit some friends in the neighborhood. These friends have adult children, not kids for S & K to play with, but these friends have always been kind and loving to my girls. I received a text from my friend saying, "...can't tell you how much I enjoyed them! Reminded me of our girls in their younger days and your kids have the best manners!"
Exhibit D (and yes, my imperfect friends, I am almost done): S noticed a new girl at school last week. She didn't hesitate to introduce herself and invite the new girl to have lunch with her and her friends. She wanted to make sure that the new girl met some nice people and didn't get into the "mean girls" crowd. While some of her other friends were more skeptical of reaching out to the new girl, she didn't even think twice. This may be the thing that makes me most proud of her. I didn't necessarily realize it, but I do think that having an extra-special sister has inherently taught S to give people a chance, don't judge quickly, and what you see is not always what you get.
It is one of my fondest wishes that she keeps that quality her whole life. I believe that having an extra-special kid in the family has taught us all to be more patient, more forgiving, more understanding, and far less quick to judge. Are we perfect at that all the time? Of course not, but when I see my girls exhibiting these qualities, I know that they will be well equipped with compassionate hearts to make the world around them better, even if in small ways.
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