There's so much... Where do I start?
[1] I'm thankful that, at my age, I still have the strength and stamina to dig out 15 8-10' tall Rose of Sharon bushes donated by a Freecycler to plant in my yard as a hedge.
[2] I'm thankful for the girlfriends I can call when I feel like I just need a friend -- whether to talk or to listen -- just another human being who understands where I am without my really having to say it.
[3] I'm thankful for the experience of the parents who have gone before me and are good enough to share their trials and tribulations with me so that, once again, I know that I'm not alone and it will all be OK in the end... Thanks Steve!
[4] I am ever so grateful for the rain this week. While it certainly put a damper on my daytime activities, it also put a damper on the 5:15am wake up calls to go walking with my sister. I love the walk but I needed the sleep... this week.
[5] I'd like to thank all the military people who serve both here and abroad to help protect me, my family and every American... My deepest gratitude to those who spend their lives ensuring that all Americans are free and safe each day. Those who choose to serve are certainly Angels Amongst Us (watch for my next Angels post). Thanks, specifically, to Rachel and her husband, who serves in the US Coast Guard stationed here on Long Island, and to Marko, retired Marine Corps. They and their families have sacrificed much by volunteering to serve in the United States Armed Forces and I am very thankful and proud of them.
And, finally, it's time for bed... Thank God!
Thursday, June 4, 2009
Wednesday, June 3, 2009
Special Exposure Wednesday
We got Miss Molly Box about 5 months ago from the Queens Animal Rescue Center. Based on their mutual love and attachment to each other, she is Michael's dog.They say over time pets and owners often begin to look like eachother. Well, THAT didn't take long! That Miss Molly Box is quickly becoming the most beautiful dog in the world to match her most beautiful boy in the world!
Friday, May 29, 2009
Down Syndrome Awareness -- Separation Anxiety With a [Twin] Twist on Transition Tools
Brian and Michael both had tonsillectomy/adenoidectomy surgery at the end of March. Both went to the ER for dehydration. Both were kept up well into the night being poked with needles, hooked up to IVs and x-rayed. Brian, however, had to stay in the hospital with Mommy for 3 days while Michael got to go home with Daddy. In the 7 days immediately following their surgery -- including the surgery itself -- the boys experienced physical pain and illness and extreme psychological stress from undergoing such a painful procedure, from their frightening and painful ER experience and... for Brian, the hospital stay... for Michael, the separation from Mommy during this physically and psychologically traumatic time. Despite undergoing the same procedure and nearly the same recovery, and despite being identical twins, each boy's experience and how he handled it has been completely unique. Brian is "over it" unless he spies the white-coat of the MD or nurse coming towards him at which point his blood pressure actually skyrockets. (The medical term for this is white coat hypertension.) This never happened before the surgery. Brian had been the kid who rolled up his sleeves for the nurse to give him a shot. Not any more! But, other than that, you'd never know the he's ever experienced a moment of stress in his life. Sadly, Michael is not having such an easy time getting past it. He's suffering from separation anxiety over leaving Mommy or Mommy leaving him. Why? Because Michael was traumatized, as was Brian, but didn't have his Mommy at a critical juncture to help him through it. And, because he's a different kid!
Michael doesn't want to go to school anymore where he loved going to school before the surgery. When we're at home, he doesn't want Mommy to be outside of the house when he's inside (or vice verse). Mommy can't go anywhere in the evening without Michael breaking down in a puddle of giant alligator tears, sitting by the door waiting for Mommy to come home. And, he wants Mommy to sit by his side even when he's engrossed in movie watching or game playing. This is a HUGE change from his pre-surgery behavior.
So, how can we help Michael get over it? His teacher quoted research in favor of quickly removing Michael from me as soon as we arrived in the school lobby -- despite his crying and holding on to me -- in an effort to avoid prolonging his "pain". After days and days of doing this, the teacher assured me that Michael had calmed down not 5 minutes later despite his continued distress during the process. This method is analogous with ripping the bandaid off the healed wound. Don't prolong the pain, just rip it off quickly to get it over with. The key word here is healed. Michael's wound is not healed. It is oozing psychological fear and pain and ripping the bandaid off quickly just makes him more afraid of bandaids and the person doing the ripping (school and teachers... like Brian's white coat and doctors/nurses). This has been our experience exactly as Michael began first not wanting to go into the school atrium, then not wanting to get out of the car once we arrived. Then he began whining "home" as we neared the school's location, and finally, not wanting to leave the house in the mornings saying in a sad and fearful tone, "Nooo. Home. Home!" as he held onto me tightly. I tried talking about how they would see all their friends and teachers and how they would play great games and take part in fun activities, naming names and naming games, to no avail. Brian was very excited while Michael whined pathetically, "No.... home.... home.... home...."
I was personally against the bandaid ripping method from the start for reasons mentioned above. And, my concerns were supported by Michael's worsening stress. In my opinion, easing him through this transition was/is key to not causing more trauma and helping him to recover. Pulling from my undergraduate college degree in Psychology for Exceptional Children, I quoted research myself, explaining to the teacher that physical and psychological trauma registers in the brain of even the youngest infant and can negatively impact their behavior though the specific traumatic incident cannot be recalled by the sufferer. As such, I developed my own plan and discussed it with the teacher, therapists and our family EI Social Worker. All approved and were willing to give it a try.
First, where Michael was going and what he was doing when he got to school had to be better than hanging out with Mommy. So, getting Michael to school in time for morning playtime (rather than arriving during snack time) was part of the plan. Second, I decided to have the teacher/aide take only Brian into the classroom, leaving Michael alone with Mommy in the lobby for a few minutes longer. I kiss Brian goodbye, give him a hug, strap on his backpack and, like the mostly untraumatized little man he is (no white coats at school), he walks enthusiastically to their classroom to begin his day. Immediately after hugging and kissing Brian goodbye, I give Michael a hug and kiss and then figuratively ignore him while he waits for the teacher or aide to return. Quickly, Michael figured out that his time in the lobby was not nearly as much fun as his time in the classroom. He immediately recognized that his otherwise always-available, identical twin brother/built-in playmate was not with him. Suddenly, Michael found himself having to choose whether he wanted to spend alone time with Mommy or fun time with Brian and, inadvertently, his friends and teachers. Finally, when Michael's teacher or aide comes back to collect him, still a bit unsure of his choice, looking back and forth between the teacher and Mommy, I say, "Oh Michael, look! Brian forgot his Woody Doll/toy truck/apple juice (fill in with Brian's favorite anything for today and use something different each day lest he catch on). Can you bring this in to him?" Now, Michael can easily choose to be with his brother, go to the fun classroom and do something for Mommy all at once. Bringing Brian his toy is the excuse he needs to push him over the edge. He can get what he wants in so many ways by going to the classroom as compared to staying with Mommy who has suddenly and uncharacteristically become very boring. (LOL).
This method has worked so well that by the time the door closes behind Brian each morning, Michael has his backpack on and is banging on the door to be let in so he can run down the hall to join his brother. The teacher wanted to take them both in this morning, but I held Michael back. I don't want to rush the process. I believe it's too soon and I don't want him to backslide! For instance, he still can't say goodbye to me because, once reminded that we'll be apart he's holding on to me again. But, I know it's just a matter of time before he insists on getting through that door before his brother... like he did pre-surgery.... pre-trauma!
Of course, this does not address the notion that, at some point, Brian and Michael may benefit from being in separate classes at school. For now, for us -- this practice is unsupported as research done specifically studying Brian and Michael shows that they're academically and developmentally on par with each other in every way, neither overshadowing the other, and that they actually champion each other and speak/participate more together than they do individually. Though separate classes was suggested for administrative reasons by their school's representative as a point of consideration for September 09, a county professional in attendance at that CPSE meeting smartly cautioned the advisory team that separating Brian and Michael could NOT be undertaken lightly given they are identical twins with special needs who have predominantly not been separated (with the exception of therapies). He went on to say that you cannot just put them in separate classes without preparation as that separation could be very traumatic and could cause significant psychological damage. Noting that if separation was deemed absolutely necessary (unusual at the tender age of 4), it should be done gradually, hour-by-hour, day-by-day and week-by-week to avoid causing trauma. Smart man to recognize the potential for trauma well before we had such an experience with the boys' surgery! That said, I'm convinced that separating them any time soon using the bandaid-ripping method would be absolutely unacceptable as it would surely cause both boys much stress. Thank God this man stood up for Brian and Michael and said what he did! I'm not sure the Committee members or school reps would have heard it quite as loud and clear coming from me.
Obviously, I'm worried about that future happenstance. But, if we're all doing our jobs between now and September, separating them should be unnecessary... For now, anyway. I'm also hoping that our current solution for Michael's separation anxiety has taught us all something about kinder, gentler ways to accomplish the task at hand and can also, perhaps, serve as a model to help ease them into what seems to be an eventually-inevitable separation at school.
But, I'm not going to worry about that now. I'm just taking one day at a time. And, today, Michael was very happy to leave me to give Brian his green matchbox pick-up truck... in the classroom full of kids and fun stuff down the hall.
Michael doesn't want to go to school anymore where he loved going to school before the surgery. When we're at home, he doesn't want Mommy to be outside of the house when he's inside (or vice verse). Mommy can't go anywhere in the evening without Michael breaking down in a puddle of giant alligator tears, sitting by the door waiting for Mommy to come home. And, he wants Mommy to sit by his side even when he's engrossed in movie watching or game playing. This is a HUGE change from his pre-surgery behavior.
So, how can we help Michael get over it? His teacher quoted research in favor of quickly removing Michael from me as soon as we arrived in the school lobby -- despite his crying and holding on to me -- in an effort to avoid prolonging his "pain". After days and days of doing this, the teacher assured me that Michael had calmed down not 5 minutes later despite his continued distress during the process. This method is analogous with ripping the bandaid off the healed wound. Don't prolong the pain, just rip it off quickly to get it over with. The key word here is healed. Michael's wound is not healed. It is oozing psychological fear and pain and ripping the bandaid off quickly just makes him more afraid of bandaids and the person doing the ripping (school and teachers... like Brian's white coat and doctors/nurses). This has been our experience exactly as Michael began first not wanting to go into the school atrium, then not wanting to get out of the car once we arrived. Then he began whining "home" as we neared the school's location, and finally, not wanting to leave the house in the mornings saying in a sad and fearful tone, "Nooo. Home. Home!" as he held onto me tightly. I tried talking about how they would see all their friends and teachers and how they would play great games and take part in fun activities, naming names and naming games, to no avail. Brian was very excited while Michael whined pathetically, "No.... home.... home.... home...."
I was personally against the bandaid ripping method from the start for reasons mentioned above. And, my concerns were supported by Michael's worsening stress. In my opinion, easing him through this transition was/is key to not causing more trauma and helping him to recover. Pulling from my undergraduate college degree in Psychology for Exceptional Children, I quoted research myself, explaining to the teacher that physical and psychological trauma registers in the brain of even the youngest infant and can negatively impact their behavior though the specific traumatic incident cannot be recalled by the sufferer. As such, I developed my own plan and discussed it with the teacher, therapists and our family EI Social Worker. All approved and were willing to give it a try.
First, where Michael was going and what he was doing when he got to school had to be better than hanging out with Mommy. So, getting Michael to school in time for morning playtime (rather than arriving during snack time) was part of the plan. Second, I decided to have the teacher/aide take only Brian into the classroom, leaving Michael alone with Mommy in the lobby for a few minutes longer. I kiss Brian goodbye, give him a hug, strap on his backpack and, like the mostly untraumatized little man he is (no white coats at school), he walks enthusiastically to their classroom to begin his day. Immediately after hugging and kissing Brian goodbye, I give Michael a hug and kiss and then figuratively ignore him while he waits for the teacher or aide to return. Quickly, Michael figured out that his time in the lobby was not nearly as much fun as his time in the classroom. He immediately recognized that his otherwise always-available, identical twin brother/built-in playmate was not with him. Suddenly, Michael found himself having to choose whether he wanted to spend alone time with Mommy or fun time with Brian and, inadvertently, his friends and teachers. Finally, when Michael's teacher or aide comes back to collect him, still a bit unsure of his choice, looking back and forth between the teacher and Mommy, I say, "Oh Michael, look! Brian forgot his Woody Doll/toy truck/apple juice (fill in with Brian's favorite anything for today and use something different each day lest he catch on). Can you bring this in to him?" Now, Michael can easily choose to be with his brother, go to the fun classroom and do something for Mommy all at once. Bringing Brian his toy is the excuse he needs to push him over the edge. He can get what he wants in so many ways by going to the classroom as compared to staying with Mommy who has suddenly and uncharacteristically become very boring. (LOL).
This method has worked so well that by the time the door closes behind Brian each morning, Michael has his backpack on and is banging on the door to be let in so he can run down the hall to join his brother. The teacher wanted to take them both in this morning, but I held Michael back. I don't want to rush the process. I believe it's too soon and I don't want him to backslide! For instance, he still can't say goodbye to me because, once reminded that we'll be apart he's holding on to me again. But, I know it's just a matter of time before he insists on getting through that door before his brother... like he did pre-surgery.... pre-trauma!
Of course, this does not address the notion that, at some point, Brian and Michael may benefit from being in separate classes at school. For now, for us -- this practice is unsupported as research done specifically studying Brian and Michael shows that they're academically and developmentally on par with each other in every way, neither overshadowing the other, and that they actually champion each other and speak/participate more together than they do individually. Though separate classes was suggested for administrative reasons by their school's representative as a point of consideration for September 09, a county professional in attendance at that CPSE meeting smartly cautioned the advisory team that separating Brian and Michael could NOT be undertaken lightly given they are identical twins with special needs who have predominantly not been separated (with the exception of therapies). He went on to say that you cannot just put them in separate classes without preparation as that separation could be very traumatic and could cause significant psychological damage. Noting that if separation was deemed absolutely necessary (unusual at the tender age of 4), it should be done gradually, hour-by-hour, day-by-day and week-by-week to avoid causing trauma. Smart man to recognize the potential for trauma well before we had such an experience with the boys' surgery! That said, I'm convinced that separating them any time soon using the bandaid-ripping method would be absolutely unacceptable as it would surely cause both boys much stress. Thank God this man stood up for Brian and Michael and said what he did! I'm not sure the Committee members or school reps would have heard it quite as loud and clear coming from me.
Obviously, I'm worried about that future happenstance. But, if we're all doing our jobs between now and September, separating them should be unnecessary... For now, anyway. I'm also hoping that our current solution for Michael's separation anxiety has taught us all something about kinder, gentler ways to accomplish the task at hand and can also, perhaps, serve as a model to help ease them into what seems to be an eventually-inevitable separation at school.
But, I'm not going to worry about that now. I'm just taking one day at a time. And, today, Michael was very happy to leave me to give Brian his green matchbox pick-up truck... in the classroom full of kids and fun stuff down the hall.
Down Syndrome Awareness -- Questions About Incidence
It just occurred to me that I have not seen any new statistics on the incidence of Down syndrome in a long time. I'd be interested to know if it has changed at all worldwide and, especially, locally -- in the US, NY and Long Island.
The reason I'm curious about this is that many professionals have said to me that Down syndrome is no longer just or predominantly afflicting the children of woman over 40 anymore but that it is spreading down towards woman who are [often much] younger than 40 more and more. Are there statistics that support this statement? If so, has the 1 in 800 before 40 and 1 in 100 after 40 statistics changed at all? Has anyone re-examined and/or recalculated recently given this "trend"?
Also, I have heard it quoted many times that 92% of all fetuses diagnosed with Down syndrome in utero are aborted. I also know that with all the in vitro births, an embryo with Trisomy 21 would NOT be implanted. As such, I would tend to think the incidence statistics would also be changing... Unless:
[1] the incidence of Down syndrome is on the rise and terminations of fetuses with DS counteracts that trend or [2] these terminations are localized (to the NY area?) and don't impact the statistics much or [3] the two trends together erase each other?
I've heard nothing new... Have you?
The reason I'm curious about this is that many professionals have said to me that Down syndrome is no longer just or predominantly afflicting the children of woman over 40 anymore but that it is spreading down towards woman who are [often much] younger than 40 more and more. Are there statistics that support this statement? If so, has the 1 in 800 before 40 and 1 in 100 after 40 statistics changed at all? Has anyone re-examined and/or recalculated recently given this "trend"?
Also, I have heard it quoted many times that 92% of all fetuses diagnosed with Down syndrome in utero are aborted. I also know that with all the in vitro births, an embryo with Trisomy 21 would NOT be implanted. As such, I would tend to think the incidence statistics would also be changing... Unless:
[1] the incidence of Down syndrome is on the rise and terminations of fetuses with DS counteracts that trend or [2] these terminations are localized (to the NY area?) and don't impact the statistics much or [3] the two trends together erase each other?
I've heard nothing new... Have you?
THANKFUL THURSDAY - On Friday
I'm thankful for:
[1] time (time to do the things I have to; time to do "optional" things; time to do nothing at all; time to spend with my kids; time to blog; time left in my life...)
[2] sleep (we're all sleeping through the night! Hear me knocking?)
[3] all things in nature (though I'm a bit tired of the rain)
[4] my 3 beautiful children (who never cease to amaze AND amuse me)
[5] my husband of 9 years (He's still the only man I'd say "I do" to!)
[1] time (time to do the things I have to; time to do "optional" things; time to do nothing at all; time to spend with my kids; time to blog; time left in my life...)
[2] sleep (we're all sleeping through the night! Hear me knocking?)
[3] all things in nature (though I'm a bit tired of the rain)
[4] my 3 beautiful children (who never cease to amaze AND amuse me)
[5] my husband of 9 years (He's still the only man I'd say "I do" to!)
Thursday, May 28, 2009
Random Funny Thought by My Old Soul
The other day as we made our way down Sunrise Highway -- which, for all you non-Long Islanders is a road that goes from the NYC border in Queens nearly all the way to "The End" in Montauk (though it changes names here and there) -- Olivia, my 7-year-old future marketing executive, spied a new sign hanging on the railroad trestle touting alternate transportation in these tough economic times with the high-cost of fuel. I've seen the sign but never attended to it's placement. Leave it to the Old Soul to notice:
"Mom, that' sort of funny, Isn't it? The sign hanging below the train tracks says, 'Trade in Your Gas Station for a Train Station.' and it's hanging right above the gas station on the same corner. It's like they're saying it right to the people who are buying gas at the gas station! I bet the guy who owns the gas station doesn't like that sign much."
Now, that's targeted marketing!
"Mom, that' sort of funny, Isn't it? The sign hanging below the train tracks says, 'Trade in Your Gas Station for a Train Station.' and it's hanging right above the gas station on the same corner. It's like they're saying it right to the people who are buying gas at the gas station! I bet the guy who owns the gas station doesn't like that sign much."
Now, that's targeted marketing!
Wednesday, May 27, 2009
ANGELS AMONGST US - The Sisterhood of the Traveling Pants
I usually don't check the mail box. Either Olivia and Grandpa do it after school or the "Sarg" does it when he comes home. I guess I don't check myself because whatever is out there will still be there when others who love to check the mail go looking for it. I am the mail sorter, disposer and the bill payer in the house but, somehow, when it's sitting in the mail box, it is out of sight and out of mind.... mine anyway. So, the other day, for no particular reason, I decided to check the mail box. And there, tucked behind several pieces of direct mail (I don't call it junk because [a] I used to be in the business and [b] if properly targeted, it's not junk to the interested receiver) was a brand new pair of bright pink water shoes in exactly Olivia's size! BONUS!
Recognizing this was an anonymous hand-me-down gift I'd like to thank the giver (Joanne, I know it's you) for the brand new hand-me-downs that apparently didn't fit your daughter when you unpacked your summer holdovers this year. Olivia and I appreciate it more than you know. She loves them and has barely taken them off! And, it saves me money and a trip to the store. Thanks so much.
Obviously, with twins you need twice the clothes and then some, I think. That's because you're more busy chasing two same-age children around (yes, that does make it a little different than chasing 2 different age children). Or maybe that's just my excuse for getting less laundry done! Regardless, we welcome hand-me-downs with open arms for the boys and for my old soul who loves recycled clothing because she HATES shopping (almost as much as I do). Seasonally, we receive clothing for the kids from multiple sources AND we pass on our outgrown clothing to other children in the neighborhood as well. We call it the "Sisterhood of the Traveling Pants" because often well made, well preserved clothing make more than one round through a family from older sibling to neighbor and back to a younger sibling. I don't even know when or how it started. Seems like it has just always been so. Personally, I don't understand those parents who wouldn't let their children be caught dead wearing "used" clothing. Half the jeans these days are hole-y (not holy) and worn out on purpose. So, you're PAYING for the manufacturers to figure out a way to fake the wear. Why not wear the real McCoy? And, with just one wear, your brand new $50 size 2T jeans are also "used", so what's the difference? Not to mention that little ones grow so quickly and wear their clothes for such a short time (if at all -- we're often handed down brand-new-with-tags clothing items like the pink water shoes) they couldn't possibly wear them out to the point of uselessness. It only makes sense to share. Besides, it keeps perfectly good clothing from filling up our dumps and further polluting our world.
For those who don't have Traveling Pants benefactors, freecyclers (http://my.freecycle.org/) are constantly giving away bagfuls of children's clothing in your area. So, if you're looking to pick up or pass on some gently used clothing, join Freecycle or donate to your local thrift shop. Also, don't underestimate the power of the seasonal yard/garage sales. 2 summer's ago, I accidentally happened upon not one, but TWO yard sales selling twin boy clothing in like-new condition. How's that for karma? I bought up a bunch of stuff in slightly larger sizes and have them stored in plastic bins marked by size and season until the boys fit into them. Garage sales, thrift shops and Freecycle are great places to pick up gently-used, age-appropriate clothes as well as toys and games for the kids. Remember, all children grow up and out of this stuff too soon. Why not share it with others instead of tossing it in the trash? Especially in today's economy, there are many families -- my own included -- who are working hard to make ends meet. Why have your neighbors spend their hard-earned money on brand new items when yours will fit the bill -- or children -- perfectly? That's not to say I don't have to fill in the gaps with personal wardrobe essentials but I certainly couldn't afford to buy or dress my kids in some of the clothing we've been gifted via the Sisterhood of the Traveling Pants. I am ever so grateful. And, my kids look good to boot!
One of the boys' therapists even commented once that Brian and Michael had the nicest wardrobe she'd ever seen on toddlers. "All hand-me-downs", I informed her. We've been very lucky to have a couple of generous benefactors with very well-dressed twin boys.
Choosing to GIVE when you don't have to; to strangers; to neighbors; when it's easier to throw it in the trash is a beautiful gift for those on the receiving end as well as for the giver (not to mention the fact that the earth and all it's inhabitants benefit from this practice too). So, many many thanks to all my Angels Amongst Us in our "Sisterhood of the Traveling Pants", for all the beautiful clothing you have knowingly or anonymously passed on to us. (Jen, Joanne, Caren and more) And, thanks to all of you who receive our gently used clothing for you have afforded me the gift of giving to others (and saving the earth in my own little way). I hope you are as happy receiving the traveling pants as I have been.
Thanks!
Recognizing this was an anonymous hand-me-down gift I'd like to thank the giver (Joanne, I know it's you) for the brand new hand-me-downs that apparently didn't fit your daughter when you unpacked your summer holdovers this year. Olivia and I appreciate it more than you know. She loves them and has barely taken them off! And, it saves me money and a trip to the store. Thanks so much.
Obviously, with twins you need twice the clothes and then some, I think. That's because you're more busy chasing two same-age children around (yes, that does make it a little different than chasing 2 different age children). Or maybe that's just my excuse for getting less laundry done! Regardless, we welcome hand-me-downs with open arms for the boys and for my old soul who loves recycled clothing because she HATES shopping (almost as much as I do). Seasonally, we receive clothing for the kids from multiple sources AND we pass on our outgrown clothing to other children in the neighborhood as well. We call it the "Sisterhood of the Traveling Pants" because often well made, well preserved clothing make more than one round through a family from older sibling to neighbor and back to a younger sibling. I don't even know when or how it started. Seems like it has just always been so. Personally, I don't understand those parents who wouldn't let their children be caught dead wearing "used" clothing. Half the jeans these days are hole-y (not holy) and worn out on purpose. So, you're PAYING for the manufacturers to figure out a way to fake the wear. Why not wear the real McCoy? And, with just one wear, your brand new $50 size 2T jeans are also "used", so what's the difference? Not to mention that little ones grow so quickly and wear their clothes for such a short time (if at all -- we're often handed down brand-new-with-tags clothing items like the pink water shoes) they couldn't possibly wear them out to the point of uselessness. It only makes sense to share. Besides, it keeps perfectly good clothing from filling up our dumps and further polluting our world.
For those who don't have Traveling Pants benefactors, freecyclers (http://my.freecycle.org/) are constantly giving away bagfuls of children's clothing in your area. So, if you're looking to pick up or pass on some gently used clothing, join Freecycle or donate to your local thrift shop. Also, don't underestimate the power of the seasonal yard/garage sales. 2 summer's ago, I accidentally happened upon not one, but TWO yard sales selling twin boy clothing in like-new condition. How's that for karma? I bought up a bunch of stuff in slightly larger sizes and have them stored in plastic bins marked by size and season until the boys fit into them. Garage sales, thrift shops and Freecycle are great places to pick up gently-used, age-appropriate clothes as well as toys and games for the kids. Remember, all children grow up and out of this stuff too soon. Why not share it with others instead of tossing it in the trash? Especially in today's economy, there are many families -- my own included -- who are working hard to make ends meet. Why have your neighbors spend their hard-earned money on brand new items when yours will fit the bill -- or children -- perfectly? That's not to say I don't have to fill in the gaps with personal wardrobe essentials but I certainly couldn't afford to buy or dress my kids in some of the clothing we've been gifted via the Sisterhood of the Traveling Pants. I am ever so grateful. And, my kids look good to boot!
One of the boys' therapists even commented once that Brian and Michael had the nicest wardrobe she'd ever seen on toddlers. "All hand-me-downs", I informed her. We've been very lucky to have a couple of generous benefactors with very well-dressed twin boys.
Choosing to GIVE when you don't have to; to strangers; to neighbors; when it's easier to throw it in the trash is a beautiful gift for those on the receiving end as well as for the giver (not to mention the fact that the earth and all it's inhabitants benefit from this practice too). So, many many thanks to all my Angels Amongst Us in our "Sisterhood of the Traveling Pants", for all the beautiful clothing you have knowingly or anonymously passed on to us. (Jen, Joanne, Caren and more) And, thanks to all of you who receive our gently used clothing for you have afforded me the gift of giving to others (and saving the earth in my own little way). I hope you are as happy receiving the traveling pants as I have been.
Thanks!
Saturday, May 23, 2009
Down Syndrome Awareness -- Pit Bull Parenting (with a secondary message on profiling)
Foreword: Profiling is acting based on predisposed beliefs of a group stereotype. In a scene from Men In Black II - Michael's current favorite -- Agent J's newest partner, Frank (a pug dog), accuses J of canine profiling. If you've read any of my previous posts on Down syndrome Awareness, you know that as a parent of 4-year-old identical twin boys who happen to have Down syndrome, I'm completely against profiling of any kind... Even canine (after all, I have a very non-aggressive Chow Chow). However, in this case, "Tenacious Parenting" just doesn't quite embody the same spirit as "Pit-Bull Parenting". So, please pardon my breach of etiquette as I use canine stereotyping that may not be accurate for all members of the Pit Bull genus but certainly rings true as a stereotypical analogy for this parent of children with special needs. Why Pit Bull Parenting? In the fight for services for my children, I have come to realize that I have to be more than tenacious. I learned quickly, going into this fight, that there is no rest for the weary and that I can never give up the fight. Throwing in the towel is not an option. As the mother of children with special needs, I realize I must approach some parenting tasks more like a pit bull -- [figuratively] bloody and scarred from the last round, I get back in the ring to ensure that my children receive all the help, services and attention they need to foster their development. I do it because I am their mother. I do it because, more often than not, no one else will. I do it because no one else needs to like I do.
For some, providing services is just a job that ends each day at 5:00pm. For me, as a parent, making sure my boys have everything they need is in my nature. It is my life. Like a pit bull - who, by the way, has a structurally wider-set and, therefore, physically stronger jaw than other dogs -- I will not/cannot give up. I continue to hang on, re-strategizing perhaps, until I win the fight. I've heard what happens to the losing dog and that cannot happen here. I am fighting for the independent lives and well-being of my children.
Following the pit bull analogy, unless inbred for fighting -- which, thankfully, I was not -- they can also be very smart (read: trainable. No, I'm not tooting my own intellectual horn, here) and loving dogs. Females are notoriously good mothers, appropriately protective and caring for their pups until they are able to live independently. A well-bred, well-trained pit knows when to fight and fights to win but also watches and waits for signs that there is danger afoot and a fight is forthcoming and inevitable.
I'd like to think I'm like the well-bred (not inbred), trainable (if not yet well-trained) mother pit with a calm and loving nature and built-in tenacity for the utmost endurance when it comes to raising my children. I know that I'm in this fight for the long haul... until my children are grown and living independently. I also realize that not every interaction is, or leads to, a fight. Thus far, in my dealings with service providers, I have mostly found the agencies and therapists more than helpful and willing to provide information to me and appropriate services for my boys. When I sensed resistance, I fought smart by finding a way to garner the services without breaking the rules or antagonizing the other dogs (remember it's JUST an analogy!).
When the boys' new preschool representatives and the NY state service-level guidelines indicated that speech services 3x weekly were warranted based on their evaluations, I knew that they needed more. So, I requested an evaluation 1 month into their new school year to be performed by someone who was not familiar with them -- unlike the former evals done by their Early Intervention (EI) speech therapist who was well acquainted with their idiosyncratic articulation problems. The new results indicated that they could not be understood at least 75% of the time by a stranger, as the guidelines are written, so another speech session was added. When the ending bell rang, the round was awarded to me... Actually, to my boys because they got what they needed, and were legitimately entitled to, to facilitate their speech development!
In another situation, I'm still in the ring. Admittedly, it has not been my strongest showing as I backed off for awhile. I had other more critical fights to fight and was less sure of myself than I should have been. Late in the EI process, the boys briefly used UCLB orthotics for pronation and arch support due to ligament and tendon laxity (they have mildly relaxed ankles and a natural arch that collapses under their weight). At that time, the need for the shoe-fitted orthotic was borderline and our trusted Physical Therapist (PT) was testing them with and without the orthotics to further determine effectiveness to address their particular weaknesses as well as potential problems the braces introduced themselves. We were in the process of attempting to have the orthotics cut back to half-foot when the boys transitioned out of EI to preschool. With the encouragement of our EI PT, I requested that our newly assigned PT examine the boys' feet and ankles and help determine the need for the continuation or alteration of the UCLB orthotics. After several attempts -- read: many many communications both oral and written -- the PT did not engage, failed to respond to my inquiries and I finally -- unlike a good, tenacious pit bull -- backed off. In my defense, it did not seem the time or place for that fight. AND, I had other fights on my ticket. Recently, that PT -- my would-be opponent in this fight -- served up some information that indicates the match is on again. After attending a seminar about a new, soft orthotic, she sent out a generic note to us parents of children with Down syndrome (did I mention I hate profiling?) about how their low muscle tone is an indicator that they should be using these newfangled orthotics. Suddenly finding myself re-engaged, I mentioned my earlier requests made to her no less than 6 months ago and, though she acknowledged me, she did not excuse herself, but rather went on to explain that these new orthotics would solve the problem... The one I'd asked her to evaluate in September, October, November and December of 2008. STILL, I don't believe she has specifically evaluated my boys' borderline low muscle tone for their orthotic support needs as individuals. The assumption is, since they have Down syndrome, they have low muscle tone which results in pronation that requires correcting. All three statements may or may not be correct to some degree for my boys or anyone with Down syndrome... The thing is, I don't believe she has even LOOKED at my guys bare feet. (Did I mention I hate profiling?) Honestly, I'd eat her up in the ring. It wouldn't be a fair fight so I am refusing any fight and choosing, instead, to go right to the boys' former Orthopaedic specialist to determine their specific needs. I mean, why get in the ring with a less-engaging dog when I can go to the pros? Right? If they say the medical need for ankle/arch support exists, then I believe it does. I will have my trusted orthopaedic guy review the literature our PT gave us on this newfangled orthotic and get his professional opinion on it's potential efficacy for my boys' needs. Because I trust him. Given our history, at this point, I don't have the same faith in their PT.
I think this is also a big part of pit bull parenting... Learning who to trust. And, trusting your gut about who may not be trustworthy... then, always keeping an eye on them. And, watching the older dogs (those with older children with Down syndrome, in my case), the pro dogs (professionals with specific experience treating children with Down syndrome), the winning dogs (other pit bull parents who have the services you want for your children) do their stuff. This is an important tip for every budding pit bull parent, like myself. Study others' fighting techniques to know what works and what doesn't with any particular "opponent" and to hone in on your own personal fighting style. If you're not the fighter in the family, perhaps Dad should have a turn in the ring (with your ringside support, of course). And, make sure you take only fair fighting tips from the pros and other pit bull parents who have fought and left the ring victorious before you. Though only 2 dogs fight at a time -- true statement; so this is your fight and yours alone -- recruiting other pit bull parents and experts as advisers to your team gives you the best chance for success. As a pit bull parent, when a fight appears inevitable, we need to learn to retreat, if necessary, so that we can position/reposition ourselves in a way that strengthens our chances of winning the battle. Know the other dog's strategy and style. Be aware of all the potential outcomes. And, remain open-minded about all the different ways to get the decision to go your way. Because, ultimately, it is a committee-based decision!
In another situation, I'm still in the ring. Admittedly, it has not been my strongest showing as I backed off for awhile. I had other more critical fights to fight and was less sure of myself than I should have been. Late in the EI process, the boys briefly used UCLB orthotics for pronation and arch support due to ligament and tendon laxity (they have mildly relaxed ankles and a natural arch that collapses under their weight). At that time, the need for the shoe-fitted orthotic was borderline and our trusted Physical Therapist (PT) was testing them with and without the orthotics to further determine effectiveness to address their particular weaknesses as well as potential problems the braces introduced themselves. We were in the process of attempting to have the orthotics cut back to half-foot when the boys transitioned out of EI to preschool. With the encouragement of our EI PT, I requested that our newly assigned PT examine the boys' feet and ankles and help determine the need for the continuation or alteration of the UCLB orthotics. After several attempts -- read: many many communications both oral and written -- the PT did not engage, failed to respond to my inquiries and I finally -- unlike a good, tenacious pit bull -- backed off. In my defense, it did not seem the time or place for that fight. AND, I had other fights on my ticket. Recently, that PT -- my would-be opponent in this fight -- served up some information that indicates the match is on again. After attending a seminar about a new, soft orthotic, she sent out a generic note to us parents of children with Down syndrome (did I mention I hate profiling?) about how their low muscle tone is an indicator that they should be using these newfangled orthotics. Suddenly finding myself re-engaged, I mentioned my earlier requests made to her no less than 6 months ago and, though she acknowledged me, she did not excuse herself, but rather went on to explain that these new orthotics would solve the problem... The one I'd asked her to evaluate in September, October, November and December of 2008. STILL, I don't believe she has specifically evaluated my boys' borderline low muscle tone for their orthotic support needs as individuals. The assumption is, since they have Down syndrome, they have low muscle tone which results in pronation that requires correcting. All three statements may or may not be correct to some degree for my boys or anyone with Down syndrome... The thing is, I don't believe she has even LOOKED at my guys bare feet. (Did I mention I hate profiling?) Honestly, I'd eat her up in the ring. It wouldn't be a fair fight so I am refusing any fight and choosing, instead, to go right to the boys' former Orthopaedic specialist to determine their specific needs. I mean, why get in the ring with a less-engaging dog when I can go to the pros? Right? If they say the medical need for ankle/arch support exists, then I believe it does. I will have my trusted orthopaedic guy review the literature our PT gave us on this newfangled orthotic and get his professional opinion on it's potential efficacy for my boys' needs. Because I trust him. Given our history, at this point, I don't have the same faith in their PT.
I think this is also a big part of pit bull parenting... Learning who to trust. And, trusting your gut about who may not be trustworthy... then, always keeping an eye on them. And, watching the older dogs (those with older children with Down syndrome, in my case), the pro dogs (professionals with specific experience treating children with Down syndrome), the winning dogs (other pit bull parents who have the services you want for your children) do their stuff. This is an important tip for every budding pit bull parent, like myself. Study others' fighting techniques to know what works and what doesn't with any particular "opponent" and to hone in on your own personal fighting style. If you're not the fighter in the family, perhaps Dad should have a turn in the ring (with your ringside support, of course). And, make sure you take only fair fighting tips from the pros and other pit bull parents who have fought and left the ring victorious before you. Though only 2 dogs fight at a time -- true statement; so this is your fight and yours alone -- recruiting other pit bull parents and experts as advisers to your team gives you the best chance for success. As a pit bull parent, when a fight appears inevitable, we need to learn to retreat, if necessary, so that we can position/reposition ourselves in a way that strengthens our chances of winning the battle. Know the other dog's strategy and style. Be aware of all the potential outcomes. And, remain open-minded about all the different ways to get the decision to go your way. Because, ultimately, it is a committee-based decision!
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In the final analysis: Please recognize that THIS IS JUST AN ANALOGY! I do not believe at all that I am at war with my home school system's Committee on Preschool Special Education (heck, I'm a parent-member) or with the administration, teachers, or therapists at my boys' current preschool (We address the boys needs as a team!). I do not walk into school or CPSE meetings with boxing gloves on (though make no mistake, I own a pair and pack a strong punch). I do not interpret everything "they" say as fighting words. But, in sticking with my pit bull parenting analogy, I do recognize that each time I come to the table seeking additional or different but always appropriate services and assistance for my children with special needs, the potential for disagreement with what I think should be prescribed is there. Being prepared for every potential battle AND acknowledging that, in the course of my children's lives there may be many battles, my goal is to strategize ways to win each and/or as many battles as possible (especially the big ones), leading up to and, ultimately, winning the war. That is, at each critical juncture, I need to find a way to get the services and assistance my children require (no more, but certainly no less, than we need) to help them grow into viable, independent and contributing members of our collective and non-profiling society (did I mention I hate profiling?).If it's a dog's life, then I am the pit bull parent raising and protecting my pups to the best of my ability, seeking a peaceful path for us all but ready to do battle to ensure my babies have everything they need to grow up to be independent, well-bred, well-trained and well-loved members of our community. No one should expect any less of me... I am a pit bull parent!
FYI: Molly The Boxer, pictured here, is just that, a boxer (not a pit bull) though some people see her short, wide jaw and, believing she is pit, are immediately afraid of her (Did I mention I hate profiling?)
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