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.
Wednesday, March 28, 2012
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.
Friday, March 16, 2012
You Don't Know Me Very Well
It was a week ago that we had our second meeting with the school team to discuss K's IEP. The good news is that this one was far less painful than the previous one. The teacher had very little to say...well, maybe because it was my turn.
That sounds pretty assertive of me, doesn't it? Shut up, Mrs. Negative Classroom Teacher. It's my turn. The fact is, I'm not particularly assertive. I am determined. I am tenacious. I will work through an issue until I've beaten the proverbial dead horse into a puddle. I am excellent at being the squeaky wheel (pleasantly persistent, thank you very much). But I'm not particularly assertive. There are times, though, when I can be manipulative...no, let's call it "strategic."
In the two weeks between meetings, I had plenty of time to do more research, gather more ideas, formulate more questions, and write a whole new list of things to cover.
*side note* It is typically recommended to dig into a meeting until it is all hammered out, no matter how long it takes. I've decided that splitting up the meeting actually works much better for me. Not only do I get the extra time to absorb all the overwhelming information from the first meeting, but I get plenty of time to prepare for the second. Granted, it gives the school/district team time to do the same, but I'm okay with that. I think the whole idea of sitting there for hours is as much a strategy for a parent as it is for the school/district team. There has to be some strategy to just plain wear a parent out and a long meeting can do just that. Also, I'm less emotional when I'm not so overwhelmed and it's very helpful to leave emotion out of these meetings whenever possible.
Husband and I talked about what we wanted to accomplish and decided that there was one especially important concern that we wanted documented: K is now about 2 years behind in reading. That affects every other subject taught in school. In the past year, she has not made much progress at all. The gap is getting wider, not narrower, between her and her peers. How do you (meaning the school team) plan to close the gap? This was strategy on our part.
Originally, I just wanted the concern documented. We were actually at this meeting to discuss the accommodations and services. Boy, did this concern take the meeting in a totally different direction. It was fine, but just not what we had planned. Is any of this process EVER what we plan? It was our intention, though, to plant the seed that we know what is expected - K to be at grade level - and to put everyone on notice that we won't stop until that day...and probably not even then. We want a plan; we expect a plan; K deserves a plan.
We have been working with a school team since K was 3 years old. The team we have now is not the team we had then. This team has been with us for 2 years now, which is long enough to know me pretty well, I think. Certain members of the team have been with us longer, so they should know me very well. It came as a surprise to me when our school district program specialist (aka Budget Barrier) said,
"Ultimately, it is the school district that makes the final decision on placement for FAPE, but that doesn't mean that your input isn't important. You are a very important part of the team."
HAHAHAHAHAHAHAHAHAHA!!!
Dude, you don't know me very well. Hello? Tenacious. Determined. Smart. Educated. Well-informed. Ph.D. in K. Do you really think, for even one millisecond, that I will allow anyone other than my husband and I to make the final decisions for K? Seriously? Have I ever just blindly accepted anything on the table without at least questioning it, let alone reserving (or using) my veto power? Clearly, I'm not following the school district rules.
I may not like the barriers that are put in front of me, but I would not be doing my job - I wouldn't be me - if I just looked at those barriers and accepted them. No, I will look for every way around, over, under, through that barrier. I may not always get my way, but it won't be because I didn't try. Mr. School District, I will promise you this: you are an important part of the team and I know you have a job to do; your input and recommendations are valuable and we will keep an open mind; but in the end, decisions will either be mutually agreed upon or they will be mine (and my husband's) alone. Maybe those aren't the "legal" rules, but that's how I roll and it's never been any different.
I think that perhaps I am just as ridiculous as they are sometimes. I continue to be surprised, even when I really do know better and they continue not to know me very well, or perhaps they just forget what I am like. Whatever the case, I'm going to get a lot of mileage out of his misguided assumption about me. Every time I think about it, I giggle. Thanks for the laugh, Mr. School District. I have renewed energy. Statements like that just fuel me. I'm far from beaten down. Bring it!
Monday, March 12, 2012
It's Not Easy Being Green...with Envy
"There she goes again. Trying to get all of the attention."
Yes, that is a direct quote from S. Just as I have suspected for some time, she's jealous. I realize this is typical sibling behavior, even though I really have no frame of reference for typical sibling behavior. That's what other people tell me. I can accept that, but I am sensitive to it. I've said it before - it cannot be easy to be the sibling of an extra-special kid.
Kids, even as they mature, don't seem to see things as logically as they could. I know, I know...duh! I just wonder what S would really think if she took time to compare her life to K's. I recognize that the jealousy stems from her perception that K gets more attention, but would she really want that same attention? If we go back to the "fair and equal" thing, which has already been established as a myth, would she really want to do what K does? Sure, K is technically spending more time with me. However, let's look at how that time has been spent.
I'm pretty confident that K could pick me out of a crowd just by seeing the back of my head. Why? Because she has spent a lot of time in the car, being driven from one therapy to another or to school and back. That's a lot of time in the backseat! Don't be deceived, either. It's not like she gets to just play in the backseat all the time. Many times, we use that time for other activities to help her in her learning. Sometimes she reads aloud to me. Sometimes, she is listening to books on CD - not fun ones, the boring stories from her Open Court reading text at school (in the hope that repetition will help her understand it more clearly). Occasionally, she does her homework in the car because the time is too short to do it at any other time. We've been known to practice spelling words in the car and also those pesky math facts. I don't think S would enjoy spending all that time in the car.
Over the years, K has spent a lot of time in different therapy settings. Granted, the one that S seemed most interested in was occupational therapy. Who could blame her? It looked like K got to spend an hour playing in sand, finger painting with shaving cream, sitting in a bucket of beans and swinging on a hammock swing...all inside! K did that once a week for 3 years. Would S really have wanted to be doing that?
Speech therapy has been and will remain a constant. S knows that she doesn't want to do that, but still, she seems to envy the time her sister gets to spend doing it. It's not logical.
For me, the hardest thing to convey to S is that even though it seems like K is getting more attention, the reason for that is not one she would want to share. I try to explain to her that the reason K went to occupational therapy was because she couldn't manage to get through a day without shutting down - her brain was like a clogged up freeway. Would you want to trade places with that? Same thing for speech - it may seem like fun to go to speech therapy but how would you feel if you couldn't communicate clearly with your friends or didn't understand what the teacher was trying to explain or didn't have the right words to express your frustrations, your joys, your fears, your excitement? This is really hard for S to conceptualize in her own mind since she has never experienced it for herself.
It's also just because that's what siblings do and her lament is a common one from the older sibling toward the younger one.
In all fairness to S, K can certainly be a drama queen and she does nab our attention - both good and bad - because of it. On the other hand, it can be quite entertaining to watch the two of them trying to grab their spotlight, upping the ante with one antic or another. I have to be careful, though. If I laugh at it as much as I'd like to, S will give me the eye roll with the huffy sigh. She is a 12 year old girl, after all and that means she is hypersensitive to any perceived criticism, whether real or not.
As a mom trying to manage raising two very different daughters who require two totally different approaches to parenting, I have to be a keen observer of things like this. The little things that S says and does are what give me a much clearer picture of where she is at, particularly in regard to K. Her statement about K trying to get all of the attention helps me to remember that S can't be taken for granted. The challenge is to keep that in mind on a daily basis, given the normal hustle and bustle of any family.
Will I get it right? Will S eventually figure out that she wouldn't want to be in K's shoes? I don't know. As with everything else on this crazy parenting journey, I just have to do the best I can with what I've got and then cross my fingers that it all turns out okay.
Yes, that is a direct quote from S. Just as I have suspected for some time, she's jealous. I realize this is typical sibling behavior, even though I really have no frame of reference for typical sibling behavior. That's what other people tell me. I can accept that, but I am sensitive to it. I've said it before - it cannot be easy to be the sibling of an extra-special kid.
Kids, even as they mature, don't seem to see things as logically as they could. I know, I know...duh! I just wonder what S would really think if she took time to compare her life to K's. I recognize that the jealousy stems from her perception that K gets more attention, but would she really want that same attention? If we go back to the "fair and equal" thing, which has already been established as a myth, would she really want to do what K does? Sure, K is technically spending more time with me. However, let's look at how that time has been spent.
I'm pretty confident that K could pick me out of a crowd just by seeing the back of my head. Why? Because she has spent a lot of time in the car, being driven from one therapy to another or to school and back. That's a lot of time in the backseat! Don't be deceived, either. It's not like she gets to just play in the backseat all the time. Many times, we use that time for other activities to help her in her learning. Sometimes she reads aloud to me. Sometimes, she is listening to books on CD - not fun ones, the boring stories from her Open Court reading text at school (in the hope that repetition will help her understand it more clearly). Occasionally, she does her homework in the car because the time is too short to do it at any other time. We've been known to practice spelling words in the car and also those pesky math facts. I don't think S would enjoy spending all that time in the car.
Over the years, K has spent a lot of time in different therapy settings. Granted, the one that S seemed most interested in was occupational therapy. Who could blame her? It looked like K got to spend an hour playing in sand, finger painting with shaving cream, sitting in a bucket of beans and swinging on a hammock swing...all inside! K did that once a week for 3 years. Would S really have wanted to be doing that?
Speech therapy has been and will remain a constant. S knows that she doesn't want to do that, but still, she seems to envy the time her sister gets to spend doing it. It's not logical.
For me, the hardest thing to convey to S is that even though it seems like K is getting more attention, the reason for that is not one she would want to share. I try to explain to her that the reason K went to occupational therapy was because she couldn't manage to get through a day without shutting down - her brain was like a clogged up freeway. Would you want to trade places with that? Same thing for speech - it may seem like fun to go to speech therapy but how would you feel if you couldn't communicate clearly with your friends or didn't understand what the teacher was trying to explain or didn't have the right words to express your frustrations, your joys, your fears, your excitement? This is really hard for S to conceptualize in her own mind since she has never experienced it for herself.
It's also just because that's what siblings do and her lament is a common one from the older sibling toward the younger one.
In all fairness to S, K can certainly be a drama queen and she does nab our attention - both good and bad - because of it. On the other hand, it can be quite entertaining to watch the two of them trying to grab their spotlight, upping the ante with one antic or another. I have to be careful, though. If I laugh at it as much as I'd like to, S will give me the eye roll with the huffy sigh. She is a 12 year old girl, after all and that means she is hypersensitive to any perceived criticism, whether real or not.
As a mom trying to manage raising two very different daughters who require two totally different approaches to parenting, I have to be a keen observer of things like this. The little things that S says and does are what give me a much clearer picture of where she is at, particularly in regard to K. Her statement about K trying to get all of the attention helps me to remember that S can't be taken for granted. The challenge is to keep that in mind on a daily basis, given the normal hustle and bustle of any family.
Will I get it right? Will S eventually figure out that she wouldn't want to be in K's shoes? I don't know. As with everything else on this crazy parenting journey, I just have to do the best I can with what I've got and then cross my fingers that it all turns out okay.
Thursday, March 8, 2012
Some of my favorites
If I sat back to think about how many hours I have logged doing research about my extra-special girl and her challenges, I might think I had been to another 4 years of college. Except, in this case, there is no degree to be achieved. How many zeroes would be at the end of that log of hours? Too many. I call Pintrest the black hole of pretty pictures - one thing leads to another that leads to another that leads to another. My research has been a lot like that, too. I start at one source which will lead me to another, etc. It seems to never end. Yet, along the way, I have found a few gems that I return to time and again.
I've mentioned this many times - navigating the complex maze of the educational system for your extra-special child is, at best, confusing and at worst, completely defeating. I'm not an attorney, nor do I want to be one, but a general knowledge of special education law has been really helpful. That's where the people at Wrightslaw come in. This book has been a huge help to me:
Written explicitly for parents, it is a great guide to all those pesky laws that seem more confusing than deciphering texting abbreviations from your teen.
They have also written another invaluable guide:
The most important thing I learned from this book from the first time I opened the page was to create and keep a paper trail. If that was all it taught you, it would be worth it, but it covers so much more and definitely keeping my emotions in check when working with the school has been much more beneficial to my daughter. It is easy to dismiss an emotional parent as, well, just emotional. It is much harder to dismiss a parent who is prepared and professional.
I continue to look for books that will guide me in helping S, my older garden-variety special, girl to navigate her own emotions as the one who has the extra-special sibling. I recently purchased this book for her:
Written in a series of questions answered by teens ranging in age from 12-19, this book shares that, if nothing else, all of the emotions that S has felt/is feeling/will feel are normal and understandable. She is not alone and I think that might be the best thing she gets from this book. Most of the siblings have more severe challenges than K, so it's not 100% relatable to S, but that, too, helps to keep some perspective on her own situation.
I am still looking for some good guidance on how to fully explain to S, in ways that she can understand completely, what the specific challenges are for K. I think S will benefit from having a more "clinical" explanation than just "her brain is different from your brain." I think I can do better than that, but I'm really hoping I can find someone who has walked that walk and might have some good ideas.
My favorite book for me - the one that reminds me that my emotions are normal and understandable is this one:
I recently wrote this review on Amazon and for the sake of my sanity and lack of general creativity, I figured I would just copy it here rather than try to come up with something new.
I don't remember who recommended this book to me, but I wish I did so I could thank them properly. In a world where we are all measured by our stats: grades, SAT scores, university diplomas, job, salary, etc., Gina Gallagher and Patricia Konjoian remind us that perfection is highly overrated. As I read their book, I felt like I had found kindred spirits. My own daughter does not have the same challenges as theirs, but my journey as a mom has been remarkably similar. Sometimes, it can feel as if you are on the journey alone, but the Shut Up Sisters remind you that you are not.
The book really recounts their own experiences raising kids with special needs, but along the way, nuggets of professional insight are provided. You will definitely cry while reading this book, but you'll also laugh out loud and be racing to share the excerpts with friends. You will finish the book feeling hopeful and more appreciative of all the imperfections around you - including your own. This may be the best part of the book - being reminded that imperfection really is just perfect.
Don't be deceived by the title! Although the title might imply that the Shut Up Sisters would like to tell off the parents of every child who is seemingly "perfect," nothing could be farther from the point. It's really about embracing all the wonderful qualities of your imperfect child and educating others so that you and your child will not have to live on the fringes of the "perfect" kids.
Many thanks and kudos to the Shut Up Sisters for opening their lives and the lives of their children to help other parents of special needs children feel comfortable, too. These are girls you would want to hang out with - not just Gina & Patty, but their daughters, too.
I promise to gather up a list of my favorite websites. I wanted to start with books, in part because I was honored to be a guest blogger at www.shutupabout.com this week. I am genuinely grateful to the Shut Up Sisters for their humor, their wit, and their humility and for allowing my voice to be heard on their website and blog.
I've mentioned this many times - navigating the complex maze of the educational system for your extra-special child is, at best, confusing and at worst, completely defeating. I'm not an attorney, nor do I want to be one, but a general knowledge of special education law has been really helpful. That's where the people at Wrightslaw come in. This book has been a huge help to me:
They have also written another invaluable guide:
I continue to look for books that will guide me in helping S, my older garden-variety special, girl to navigate her own emotions as the one who has the extra-special sibling. I recently purchased this book for her:
I am still looking for some good guidance on how to fully explain to S, in ways that she can understand completely, what the specific challenges are for K. I think S will benefit from having a more "clinical" explanation than just "her brain is different from your brain." I think I can do better than that, but I'm really hoping I can find someone who has walked that walk and might have some good ideas.
My favorite book for me - the one that reminds me that my emotions are normal and understandable is this one:
I recently wrote this review on Amazon and for the sake of my sanity and lack of general creativity, I figured I would just copy it here rather than try to come up with something new.
I don't remember who recommended this book to me, but I wish I did so I could thank them properly. In a world where we are all measured by our stats: grades, SAT scores, university diplomas, job, salary, etc., Gina Gallagher and Patricia Konjoian remind us that perfection is highly overrated. As I read their book, I felt like I had found kindred spirits. My own daughter does not have the same challenges as theirs, but my journey as a mom has been remarkably similar. Sometimes, it can feel as if you are on the journey alone, but the Shut Up Sisters remind you that you are not.
The book really recounts their own experiences raising kids with special needs, but along the way, nuggets of professional insight are provided. You will definitely cry while reading this book, but you'll also laugh out loud and be racing to share the excerpts with friends. You will finish the book feeling hopeful and more appreciative of all the imperfections around you - including your own. This may be the best part of the book - being reminded that imperfection really is just perfect.
Don't be deceived by the title! Although the title might imply that the Shut Up Sisters would like to tell off the parents of every child who is seemingly "perfect," nothing could be farther from the point. It's really about embracing all the wonderful qualities of your imperfect child and educating others so that you and your child will not have to live on the fringes of the "perfect" kids.
Many thanks and kudos to the Shut Up Sisters for opening their lives and the lives of their children to help other parents of special needs children feel comfortable, too. These are girls you would want to hang out with - not just Gina & Patty, but their daughters, too.
I promise to gather up a list of my favorite websites. I wanted to start with books, in part because I was honored to be a guest blogger at www.shutupabout.com this week. I am genuinely grateful to the Shut Up Sisters for their humor, their wit, and their humility and for allowing my voice to be heard on their website and blog.
Thursday, March 1, 2012
Laughter is the Best Medicine
A few weeks ago, my day went like this: Take K to school at 8:35 a.m.; come back home, eat breakfast; while eating breakfast, I realize that K forgot her FM system (very important for her to have in class) and it is in the backseat of my car; drive back to K's school to drop off system and drive back home. That made two trips to K's school in the space of an hour. I had two things on my agenda that day: Make an appointment to get my hair done and make an appointment for S to see the orthopedic surgeon for a check up. I know, already you are wondering how I got off so easy to only have 2 things on my "to do" list. I didn't. I've just learned to set my expectations really low, since things never seem to go as expected. This is the life of a mom, not just a mom to an extra-special kid. Call the salon; can't get an appointment until 4 weeks past the time I want it. Hmmmm.... two things that have not gone smoothly. I should see the warning in that. Call the orthopedic surgeon's office, expecting that it will be a month or so before we get an appointment. I was wrong! They can see her that very day! This requires some juggling, so I email K's teacher to let her know I will have to pick her up early; I call S's school to let them know I will have to pick her up early. I call the piano teacher to cancel K's lesson that day. I start packing the doctor's office survival kit because last time we had an appointment like that at the orthopedic surgeon's office, he was running 2 hours behind. Okay, all bases covered! Not more than 45 minutes later, my phone rings. It is S, calling from school, not feeling well. Could I please come pick her up? Of course I can. Dammit. Now I've got a sick kid AND I have to go back and rearrange our entire schedule AGAIN! I email K's teacher...again. I call the piano teacher...again. I call the orthopedic surgeon...again. I felt like a boomerang - right back where I started. I could have been frustrated, but instead, I saw this as funny. Seriously, could it have been any crazier? Once upon a time, before I had an extra-special kid - heck, before I had any kids at all - a day like that would have turned me upside down and completely derailed me. Now? I've learned that sometimes you just have to roll with the punches. I'm learning to see humor in the mundane things we see every day.
S is at that age where she is just plain silly a lot of the time. She will find something that amuses her and before she knows it, she's rolling on the floor in full belly-laughing mode. We were recently listening to an old CD of Disney music. It has a whole bunch of songs on it from movies S & K have never heard of or seen. There is one song, "The Spectrum Song," from Walt Disney's Wide World of Color (1961). Ludwig Von Drake (voiced by Paul Frees) sings about the colors of the spectrum and toward the end, is befuddled over all the colors - including black, and green, and white and stripes and plaid. For some reason, this absolutely sends S into fits of giggles. I know it's silly, but that silly? Not sure. However, her laughter is, indeed, contagious. It is so funny to watch her laughing over something silly that it gets the rest of us going as well.
K has always been able to make us laugh. It is often over things that she says or does that she never intended to be funny, but because it came from her, it made us laugh. She will come up with things that seem so out of character for her. The other day, she came marching into the office, cup in hand, and declared, "I just went to get myself a refreshment." Refreshment? Who says "refreshment?" What 10 year old anywhere says, "refreshment," let alone a speech/language impaired kid? When the song from The Muppet Movie won an Oscar, K enthusiastically hollered, "Oh yeah! Now that's what I'm talkin' about! Woo Hoo!" Seriously, where does she get this stuff?
It's a simple gift: laughter. I find that as an adult, the opportunities for that uninhibited laughter don't come along as often. Maybe I've just lost my some of my sense of humor. Maybe adults have so many responsibilities to manage that we forget to see the humor in the mundane parts of life. Having an extra-special kid helps with that. I mean, at some point, you have to look around all the things you are juggling, all the emotional burdens you are carrying and just realize that you can't let it get to you. Watching the things that crack my girls up reminds me that sometimes, just because we are adults, we take life far too seriously. When was the last time my girlfriends and I managed to just be together long enough to find something ridiculously funny that makes us dissolve into tear-inducing laughter?
S is at that age where she is just plain silly a lot of the time. She will find something that amuses her and before she knows it, she's rolling on the floor in full belly-laughing mode. We were recently listening to an old CD of Disney music. It has a whole bunch of songs on it from movies S & K have never heard of or seen. There is one song, "The Spectrum Song," from Walt Disney's Wide World of Color (1961). Ludwig Von Drake (voiced by Paul Frees) sings about the colors of the spectrum and toward the end, is befuddled over all the colors - including black, and green, and white and stripes and plaid. For some reason, this absolutely sends S into fits of giggles. I know it's silly, but that silly? Not sure. However, her laughter is, indeed, contagious. It is so funny to watch her laughing over something silly that it gets the rest of us going as well.
K has always been able to make us laugh. It is often over things that she says or does that she never intended to be funny, but because it came from her, it made us laugh. She will come up with things that seem so out of character for her. The other day, she came marching into the office, cup in hand, and declared, "I just went to get myself a refreshment." Refreshment? Who says "refreshment?" What 10 year old anywhere says, "refreshment," let alone a speech/language impaired kid? When the song from The Muppet Movie won an Oscar, K enthusiastically hollered, "Oh yeah! Now that's what I'm talkin' about! Woo Hoo!" Seriously, where does she get this stuff?
It's a simple gift: laughter. I find that as an adult, the opportunities for that uninhibited laughter don't come along as often. Maybe I've just lost my some of my sense of humor. Maybe adults have so many responsibilities to manage that we forget to see the humor in the mundane parts of life. Having an extra-special kid helps with that. I mean, at some point, you have to look around all the things you are juggling, all the emotional burdens you are carrying and just realize that you can't let it get to you. Watching the things that crack my girls up reminds me that sometimes, just because we are adults, we take life far too seriously. When was the last time my girlfriends and I managed to just be together long enough to find something ridiculously funny that makes us dissolve into tear-inducing laughter?
One of my goals from now on is to make a conscious effort to share that laughter with my girls every day. When the challenges in life get to me, as they did after our IEP meeting last week, I will remember that these two marvelous girls find the fun in their days in ways that I have forgotten. May we all be blessed with more belly laughs in our days!
P.S. In the time since I began this post a couple of days ago until now, when I am about ready to publish this post, I have found that this topic is more relevant than I thought. First, while K was in speech therapy on Wednesday, I was chatting with another parent (who is actually the grandma to another child at speech) and she made a comment about how she hasn't really laughed - really, really laughed - since her husband died 8 years ago. She finds things funny, but nothing that gets her really going. It seems that maybe more people than me are losing that carefree experience of the world where we find the true laughter in life around us.
The second thing that happened was that I attended my book club meeting. We were discussing a book set during WWII; main characters were Jewish. Although the subject matter in the book wasn't particularly funny, our discussion was spirited and punctuated by moments of spontaneous laughter. So, to my book club girls, I thank you for giving me an evening of much needed, grown-up girl time and the gift of some really good humor that kept me smiling the rest of the night. You girls are some super fun people and I'm glad to know you!
P.S. In the time since I began this post a couple of days ago until now, when I am about ready to publish this post, I have found that this topic is more relevant than I thought. First, while K was in speech therapy on Wednesday, I was chatting with another parent (who is actually the grandma to another child at speech) and she made a comment about how she hasn't really laughed - really, really laughed - since her husband died 8 years ago. She finds things funny, but nothing that gets her really going. It seems that maybe more people than me are losing that carefree experience of the world where we find the true laughter in life around us.
The second thing that happened was that I attended my book club meeting. We were discussing a book set during WWII; main characters were Jewish. Although the subject matter in the book wasn't particularly funny, our discussion was spirited and punctuated by moments of spontaneous laughter. So, to my book club girls, I thank you for giving me an evening of much needed, grown-up girl time and the gift of some really good humor that kept me smiling the rest of the night. You girls are some super fun people and I'm glad to know you!
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