Getting Your Foot In the Door and Growing It
Our Early Intervention Social Worker opened the door for us. Ellen -- also known as Professor Paige -- who doubles as an adjunct Professor at Nassau Community College scheduled me, the boys and my old soul to meet and speak with her Psychology for Exceptional Children Class about our life experience including what it's like to have children or a sibling with Down syndrome and how Early Intervention fits into and affects our lives and relationships. The following semester, Ellen scheduled us to speak with her students again as well as extending an invitation to another Psychology class to join in on our unscripted and personal chat sessions. The students listened to me talk about our daily lives, our hopes and dreams, our victories and our difficulties. The conversation was not scripted but was largely directed by impromptu questions asked by students who, all the while, were playing and conversing with the boys and Olivia as well. Many students had never actually met someone with Down syndrome before meeting Brian and Michael. Some were somewhat familiar with it because an uncle, aunt or older family member had it. And there was, occasionally, an enlightened student that had a younger sibling with Down syndrome who was growing up with all the advantages that modern developmental science offers children with special needs today. For most though, all they knew of Down syndrome prior to our visit was what they'd heard from their various professors (not always enlightened, though Professor Paige surely is) and what they'd read in text books, which are predominantly still written from a historical standpoint as opposed to the down syndrome of today... significantly changed with the advent of Early Intervention.
Invariably, the students openly expressed that Brian and Michael "seem like normal todders" to which Professor Paige replied, "They are not LIKE normal toddlers! They ARE normal toddlers. They just happen to have Down syndrome." Yes, Down syndrome impacts their lives but they could easily see that it does not change the fact that Brian and Michael are two little boys who play and grow and learn. I dare say, the experience had a positive and mind-changing affect on every student we met with. This was confirmed when another professor at the same college inquired when she overheard some of her students talking amongst themselves about the impact our visit had on them. As luck would have it, that professor had a child with special needs. Though she did not know us, she knew her child's special education teacher treated identical twins with Down syndrome so she mentioned it to her. It so happens that her special ed teacher is also ours! And, she called excitedly to tell me that the students told their professor that meeting Brian and Michael had been an extraordinary experience that they will NEVER forget!
I KNOW this is true. It is why I chose this venue to pursue my advocacy efforts on behalf of children with Down syndrome. You see, I had such an experience many many years ago! 27 years ago to be exact! I sat in a college classroom just like theirs studying Behavioral Psychology. Interestingly, I cannot recall the professor's name but I will never forget the name of his adopted son... Benjamin. Nor the day I met Benjamin when his Dad brought him to class, as a guest one day, to help demonstrate the extraordinary possiblities Behavior Modification techniques brought to the lives of people like his son. Benjamin had autism. And, he made noble attempts with some success to interact with us. He was, perhaps, 9 years old and we were inept 19-year-olds, students who'd barely left the nest at that point. I am, beyond a doubt, still today touched by the extraordinary experience of meeting Benjamin. Putting a face, a child, a person, to what I thought of then as a scary diagnosis.
The boys' speech therapist also happened to be a college professor at another local college, Adelphi University. After hearing of our visits, she too scheduled us to come and speak with her speech-language classes about the Early Intervention experience from the family's point of view and about the impact each therapist has on the family... Each therapist is not only treating the child/client but, in fact, they are treating the whole family. While their therapeutic actions are meant to be repeated by the family members to help foster development, all of their beliefs, hopes, words and actions are also being ingrained into each family's mindset as well.
Our visits were rewarding for the students as well as for me and my family. By exposing these students -- the future therapists and special educators -- to Brian and Michael I knew we were influencing their beliefs about what Down syndrome is and is not. And, changing their view of what a person with Down syndrome is and is not... and what such a person could grow to be with their help and support! As such, I decided to expand my circle of influence to include more college students... the future therapists and educators of children with special needs.... The future neighbors, parents, aunts, uncles and friends of people with Down syndrome.
I happen to live in a very congested area of the country so there are many local colleges that are within more-than-reasonable round-trip travel distance for me and my children without totally disrupting our therapy and education schedules. I googled the name of each of these colleges and perused the degree offerings and departments. I finally settled on the following departments within each school: Psychology, for access to the future therapists and social workers; Education/Special Education, where I could influence the future teachers of both general and special education; Speech/Language, to ensure the future speech and hearing teachers would hear my spiel and not prejudge children like mine; and Nursing, so that the medical profession could first see a child with Down syndrome as an individual before seeing them as a diagnosis. Then, for each department selected, within each college, I identified the department chairperson's name, title, address, phone and email address and commited them all to a spreadsheet. Where any critical information -- especially email address -- was missing, I telephoned to gather the pertinent data needed. Finally, I sent a compelling letter, via email, to each of these individuals with an offer to bring my special family to meet and speak with their students.
NOTE: Next time I'll be sharing the actual e-mail I sent to the college department chairs and, finally, I'll write up and post the general message I carry to the students. (I have key messages and experiences I consistently share but the talk is always unscripted.)
Monday, June 29, 2009
Sunday, June 28, 2009
Down Syndrome Awareness -- "Back to School" Grass Roots Advocacy for All People with Down Syndrome - Part I
Who Are Those Masked Men and How Did They Get Here, you ask? (Bear with me... This is the touchy, feely introduction that precedes the hardcore "How To" section of this post-series on how you can think globally and act locally by implementing "Back to School" Grass Roots Advocacy Efforts on behalf of people with Down syndrome in your own neck of the woods.)
Remember that old commercial, “Don’t hate me because I’m beautiful!”? No, I’m not beautiful, not by a long shot… but my guys are! They’re not only beautiful but they’re also amazing in what they’ve achieved! And, I want everyone to meet them… to see what’s possible.
True, I have been more than doubly blessed with Brian and Michael. First, there are two of them. And, while the midwife’s “there’s the other baby” discovery nearly knocked me off the examining table at 8 weeks gestation, I could not be more pleased -- if not just as dumbfounded after 4 years -- that I have twins. IDENTICAL twins! Blows my mind! Still! And, for those of us living in what some call Holland but I like to refer to as My EDEN, yes, my guys have been blessed with an extra 21st chromosome. And yes again, BOTH of them have Down syndrome… they are genetically identical. Honestly, I wouldn’t have it any other way! Because, as similar to “typical” 4-year-olds as they are, sadly, many in our society will only see and draw attention to their differences. They are identical twins AND they have Down syndrome. Statistically, they are nearly a 1 in a million occurrence. But, as different as they may seem to others, they will always seem more the same to each other. That’s a comfort to me. To know that they will always have each other… without judgment.
When I was a child, I was a desperate tom boy! (ok, I still am, LOL!) But, so was my friend, Lori, who I hung around with from 4th grade pretty much through college (with a brief 2-year sabbatical when she decided to experiment with marijuana and I chose not to). While all the other little girls were flitting around in their dresses being girly girls, we were killy fishing and climbing trees. We had each other and it didn’t matter what the other kids did or said. Not to us! My guys are like that... lucky enough to have such camaraderie and sameness built in. Like the TWO musketeers. All for one and one for all!
Acceptance of their diagnoses of Down syndrome came easily to my husband and me. Honestly, I don’t know why but the fact that they have DS has never stunned us, saddened us or slowed us down… (With maybe the exception of the first 15 seconds after they told us they suspected and were testing for Down syndrome…. when my husband looked as though he’d been punched in the gut and wanted to go hide in a closet somewhere and scream, “NOOOOOO!” He snapped out of it just as quickly saying he saw 2 babies who needed loving, diaping and feeding. But, that’s another story for another time!) The identical twin thing truly knocked us for a loop… Still does! But, not the Down syndrome. Seems we both felt, after the fact (with a little foreshadowing 10 years ago that we didn’t recognize until that very moment), that we were always headed in this direction, to this spot and we were totally meant to be right here where we are. I really can’t explain it better than that.
The boys were born via c-section 8 weeks premature... their choice! Nearly 5 lbs each and breathing on their own (I'm lucky they didn't do those last 8 growth-weeks). Healthy. No heart problems. No feeding problems (latched on and nursed immediately). After 2- and 6-week stays in the Mercy Medical Center NICU to ensure Brian’s and Michael’s internal temperature gauges were operating optimally, and, for Michael, to come through a near fatal tangle with NEC (triggered by a hospital-borne C-dificil infection) with flying colors and literally NO complications -- they came home to take their rightful places in our family. At -4-days-old we began Early Intervention services at home. Anyone with a child with DS knows this drill… starting with evaluations that result in ever-increasing levels of in-home services in OT, PT, speech and special education along with the assigned case worker and family social worker. Being in our home as often as they were, the therapists quickly became an integral part of our family life. They were there at wake up time, through all 3 meals, at naptime and before bedtime... They were ever present! They’ve certainly seen me at my worst – still in pjs, unshowered, hair unkempt and bare faced (read: no make up) -- far more often than at my best. (Heck, I’m not even sure what that looks like anymore!) And, thankfully I’ve managed to never become the subject of one of their stories about accidentally catching a parent in the buff because they were unaware a therapist was afoot. (Honestly, I’m not sure how something like that could happen but…) With two children with special needs and the revolving door aptly (if not literally) installed in our home, we had countless numbers of professionals in and out all day long, nearly every day of the week. Conversations ranged from issues specific to my children to generalized information about OT, PT, speech, special education and Down syndrome. Every so often, someone would come out with a phrase or statement about Down syndrome that I felt indicated a lack of understanding about the boys’ diagnoses and/or their abilities, or potential to achieve a particular task or milestone... Or worse, a comment that I found outright insulting. Being me, I quickly called attention to and corrected these faux pas both to keep my family from suffering the mal effects of hearing and maybe believing such slanted/prejudiced terms or concepts in reference to our beautiful boys as much as to educate the mis-speaker to a more enlightened and accurate way of thinking.
It was our Family Social Worker that first recognized this, my evolving mission, while we chatted during one of our then-weekly sessions. She questioned why I chose to continue to work with a person who obviously had limiting beliefs about my children. I explained that the statements were NOT about MY children but rather they were the generalized, misinformed thoughts of a -- not uneducated but rather -- wrongly educated person regarding the affects of Down syndrome on some all-encompassing, representative individual. I explained that, for my family, a good therapist -- someone who worked well with the boys, who the boys liked and who, most importantly, got results – was a rare find! I explained that such a person misspeaking in MY home was an opportunity for me to re-educate them about the affects of DS on the individuals that are my sons… which is different from the affects it has on every other individual with Down syndrome. An opportunity to explain the widely varying impact DS MAY have on every individual born with that extra 21st chromosomal material. To explain about the fallibility of IQ testing. About what is possible versus what the stereotypes and generalizations would have me believe will never happen… Things I not only believe but I KNOW will happen here in my home, for my boys! Such misspeaking in someone else’s home where, perhaps, the mother might not be as iron-willed or forward as I am, could do GREAT damage to that other family’s beliefs about what their child can achieve, ultimately negatively affecting that child’s development! I certainly didn’t want that to happen! And, I felt strongly that the comments were not malicious but based on ignorance – as most of the stupid comments I hear with regards to Down syndrome are! As Brian’s and Michael’s mother, I saw this as just the beginning of a lifelong re-education of the public… just a part of my job as I worked to carve out peaceful paths and foster independent lives for my beautiful children who also happen to have Down syndrome.
As an adjunct Psychology professor at Nassau Community College, one of many local colleges in our area, our family social worker was addressing many of these very issues and dispelling inappropriate myths about Down syndrome with her students. As such, she suggested that perhaps I’d like to bring the boys and my old soul in to talk with her class about our experience, our reality. To introduce them to Brian and Michael and to re-educate them on what is possible… And, so began my “Back to School” Grass Roots Advocacy efforts on behalf of all INDIVIDUALS with Down syndrome.
Please watch for more detailed information on how I continue to grow my grass roots advocacy efforts by going “Back to School” to the local colleges to meet and speak with students who are planning careers working with children like mine, children with Down syndrome, as well as children with other special needs. Students who hold the future of so many people with special needs in their hands… through their actions, words and beliefs. Actions, words and beliefs I hope to influence. And, a future we can all influence.
Remember that old commercial, “Don’t hate me because I’m beautiful!”? No, I’m not beautiful, not by a long shot… but my guys are! They’re not only beautiful but they’re also amazing in what they’ve achieved! And, I want everyone to meet them… to see what’s possible.
True, I have been more than doubly blessed with Brian and Michael. First, there are two of them. And, while the midwife’s “there’s the other baby” discovery nearly knocked me off the examining table at 8 weeks gestation, I could not be more pleased -- if not just as dumbfounded after 4 years -- that I have twins. IDENTICAL twins! Blows my mind! Still! And, for those of us living in what some call Holland but I like to refer to as My EDEN, yes, my guys have been blessed with an extra 21st chromosome. And yes again, BOTH of them have Down syndrome… they are genetically identical. Honestly, I wouldn’t have it any other way! Because, as similar to “typical” 4-year-olds as they are, sadly, many in our society will only see and draw attention to their differences. They are identical twins AND they have Down syndrome. Statistically, they are nearly a 1 in a million occurrence. But, as different as they may seem to others, they will always seem more the same to each other. That’s a comfort to me. To know that they will always have each other… without judgment.
When I was a child, I was a desperate tom boy! (ok, I still am, LOL!) But, so was my friend, Lori, who I hung around with from 4th grade pretty much through college (with a brief 2-year sabbatical when she decided to experiment with marijuana and I chose not to). While all the other little girls were flitting around in their dresses being girly girls, we were killy fishing and climbing trees. We had each other and it didn’t matter what the other kids did or said. Not to us! My guys are like that... lucky enough to have such camaraderie and sameness built in. Like the TWO musketeers. All for one and one for all!
Acceptance of their diagnoses of Down syndrome came easily to my husband and me. Honestly, I don’t know why but the fact that they have DS has never stunned us, saddened us or slowed us down… (With maybe the exception of the first 15 seconds after they told us they suspected and were testing for Down syndrome…. when my husband looked as though he’d been punched in the gut and wanted to go hide in a closet somewhere and scream, “NOOOOOO!” He snapped out of it just as quickly saying he saw 2 babies who needed loving, diaping and feeding. But, that’s another story for another time!) The identical twin thing truly knocked us for a loop… Still does! But, not the Down syndrome. Seems we both felt, after the fact (with a little foreshadowing 10 years ago that we didn’t recognize until that very moment), that we were always headed in this direction, to this spot and we were totally meant to be right here where we are. I really can’t explain it better than that.
The boys were born via c-section 8 weeks premature... their choice! Nearly 5 lbs each and breathing on their own (I'm lucky they didn't do those last 8 growth-weeks). Healthy. No heart problems. No feeding problems (latched on and nursed immediately). After 2- and 6-week stays in the Mercy Medical Center NICU to ensure Brian’s and Michael’s internal temperature gauges were operating optimally, and, for Michael, to come through a near fatal tangle with NEC (triggered by a hospital-borne C-dificil infection) with flying colors and literally NO complications -- they came home to take their rightful places in our family. At -4-days-old we began Early Intervention services at home. Anyone with a child with DS knows this drill… starting with evaluations that result in ever-increasing levels of in-home services in OT, PT, speech and special education along with the assigned case worker and family social worker. Being in our home as often as they were, the therapists quickly became an integral part of our family life. They were there at wake up time, through all 3 meals, at naptime and before bedtime... They were ever present! They’ve certainly seen me at my worst – still in pjs, unshowered, hair unkempt and bare faced (read: no make up) -- far more often than at my best. (Heck, I’m not even sure what that looks like anymore!) And, thankfully I’ve managed to never become the subject of one of their stories about accidentally catching a parent in the buff because they were unaware a therapist was afoot. (Honestly, I’m not sure how something like that could happen but…) With two children with special needs and the revolving door aptly (if not literally) installed in our home, we had countless numbers of professionals in and out all day long, nearly every day of the week. Conversations ranged from issues specific to my children to generalized information about OT, PT, speech, special education and Down syndrome. Every so often, someone would come out with a phrase or statement about Down syndrome that I felt indicated a lack of understanding about the boys’ diagnoses and/or their abilities, or potential to achieve a particular task or milestone... Or worse, a comment that I found outright insulting. Being me, I quickly called attention to and corrected these faux pas both to keep my family from suffering the mal effects of hearing and maybe believing such slanted/prejudiced terms or concepts in reference to our beautiful boys as much as to educate the mis-speaker to a more enlightened and accurate way of thinking.
It was our Family Social Worker that first recognized this, my evolving mission, while we chatted during one of our then-weekly sessions. She questioned why I chose to continue to work with a person who obviously had limiting beliefs about my children. I explained that the statements were NOT about MY children but rather they were the generalized, misinformed thoughts of a -- not uneducated but rather -- wrongly educated person regarding the affects of Down syndrome on some all-encompassing, representative individual. I explained that, for my family, a good therapist -- someone who worked well with the boys, who the boys liked and who, most importantly, got results – was a rare find! I explained that such a person misspeaking in MY home was an opportunity for me to re-educate them about the affects of DS on the individuals that are my sons… which is different from the affects it has on every other individual with Down syndrome. An opportunity to explain the widely varying impact DS MAY have on every individual born with that extra 21st chromosomal material. To explain about the fallibility of IQ testing. About what is possible versus what the stereotypes and generalizations would have me believe will never happen… Things I not only believe but I KNOW will happen here in my home, for my boys! Such misspeaking in someone else’s home where, perhaps, the mother might not be as iron-willed or forward as I am, could do GREAT damage to that other family’s beliefs about what their child can achieve, ultimately negatively affecting that child’s development! I certainly didn’t want that to happen! And, I felt strongly that the comments were not malicious but based on ignorance – as most of the stupid comments I hear with regards to Down syndrome are! As Brian’s and Michael’s mother, I saw this as just the beginning of a lifelong re-education of the public… just a part of my job as I worked to carve out peaceful paths and foster independent lives for my beautiful children who also happen to have Down syndrome.
As an adjunct Psychology professor at Nassau Community College, one of many local colleges in our area, our family social worker was addressing many of these very issues and dispelling inappropriate myths about Down syndrome with her students. As such, she suggested that perhaps I’d like to bring the boys and my old soul in to talk with her class about our experience, our reality. To introduce them to Brian and Michael and to re-educate them on what is possible… And, so began my “Back to School” Grass Roots Advocacy efforts on behalf of all INDIVIDUALS with Down syndrome.
Please watch for more detailed information on how I continue to grow my grass roots advocacy efforts by going “Back to School” to the local colleges to meet and speak with students who are planning careers working with children like mine, children with Down syndrome, as well as children with other special needs. Students who hold the future of so many people with special needs in their hands… through their actions, words and beliefs. Actions, words and beliefs I hope to influence. And, a future we can all influence.
Thursday, June 25, 2009
THANKFUL THURSDAY - Just In Time
The end of the school year always wreaks havoc on my peace of mind. Too many to do's and not enough time to do them. So, with all the stress I've been feeling, with little or no time to vent or let off a little steam, by the time Thursday rolls around again, I'm feeling hard pressed not thankful. But, focusing on what I've got [to be thankful for] seems the perfect remedy to relieve the stress, chase the blues, and vanquish the blahs. So, here goes:
[1] Thank God there's white vinegar in the house. Yup, forgot to put sunscreen on the old soul for her pool party this afternoon. Can't find the aloe vera lotion so I had to send Sarg to CVS to go buy some more! First sunburn of her short 7 years. Sure I told her to wear the t-shirt top bathing suit so she wouldn't get burned... she didn't! But, I'm the adult and I should have put the sunscreen on her. I remembered as I drove away -- spying the clouds, considering the last 14 days of non-stop rain and thinking she'd be ok -- and I'm kicking myself for not going back. I'm paying now. Unfortunately, so is she! (BTW - It's not a horrible sunburn compared to the 1" blistering burns I got over and over again as a kid... She's not a lobster... just uncomfortably pink... all over! But we're supposed to know better now... Right? Just some more fodder for my I'm-a-bad-mother guilt trip!)
[2] Thank God for the friends who encourage me just by being on the other end of the phone. I don't even have to say anything... Just knowing there's a friend within earshot whose been there/done that is enough. Thanks Nicole!
[3] I'm not sure if I'll care about turning 50 (which is 4 years away yet). But, I'm glad that I'm not 50 right now. I'm not where I want to be physically at 46. And, I think if I were here and 50, I'd feel worse. Last August, I was hoping to be 40 lbs less for the camping trip this August (not gonna happen). Maybe I can lose 10 before then! But I guess I'll just have to shoot for hitting 50 with 40 lbs less force via a healthier life style. How's that for setting short- and long-term goals?
[4] I am sooooo glad that the old soul and the boys have no school for the next 10 days. That means Mommy has 10 commuting-free days too! We're not going anywhere that I can think of [yet, though I desperately WANT to go somewhere] and we've got pets that we love love love for 360 days of the year right up until I feel like jumping in the car with the kids for an impromptu road trip [like I do now] and suddenly realize I can't do that because there's nobody to take care of the pets in my absence. Oh well. It'll be a good 10 days anyway! We're going to vacation at home! Hit the local attractions: Statue of Liberty, Bronx Zoo, USS Intrepid Air and Sea Museum, the Beach, Ice Cream shop, take a day cruise/boat ride, bike ride in a new park (got one in mind that overlooks the LI Sound), go north (to LI's Gold Coast), go east (to the end - aka. Montauk's fishing villages), etc. Should be fun... Maybe even more fun than actually going away because we all get to come home and get a good night's sleep in our own comfy beds every night and I don't even have to pack a suitcase... Yeah!
[5] I'm thankful I have the luxury of deciding whether or not and when my boys annoying little health issues should be addressed via surgery as necessary. Yes, we're considering surgery for another issue... but it's not a MAJOR issue. Actually, their health issues -- while important -- are, thankfully, not life threatening. More quality of life stuff and improved functioning kind of stuff. And, I am so very thankful for this and their general good health.
SPECIAL THANKS: I'm grateful for this beat up old roof over my head. Grateful that, with all this rain, it didn't leak (neither did the basement). And, grateful that -- unlike the man I pointed out to my old soul the other day who's living out of a shopping cart under the train trestle, all his possessions in plastic bags to keep them dry -- we have a home! And, we are incredibly lucky that we do!
[1] Thank God there's white vinegar in the house. Yup, forgot to put sunscreen on the old soul for her pool party this afternoon. Can't find the aloe vera lotion so I had to send Sarg to CVS to go buy some more! First sunburn of her short 7 years. Sure I told her to wear the t-shirt top bathing suit so she wouldn't get burned... she didn't! But, I'm the adult and I should have put the sunscreen on her. I remembered as I drove away -- spying the clouds, considering the last 14 days of non-stop rain and thinking she'd be ok -- and I'm kicking myself for not going back. I'm paying now. Unfortunately, so is she! (BTW - It's not a horrible sunburn compared to the 1" blistering burns I got over and over again as a kid... She's not a lobster... just uncomfortably pink... all over! But we're supposed to know better now... Right? Just some more fodder for my I'm-a-bad-mother guilt trip!)
[2] Thank God for the friends who encourage me just by being on the other end of the phone. I don't even have to say anything... Just knowing there's a friend within earshot whose been there/done that is enough. Thanks Nicole!
[3] I'm not sure if I'll care about turning 50 (which is 4 years away yet). But, I'm glad that I'm not 50 right now. I'm not where I want to be physically at 46. And, I think if I were here and 50, I'd feel worse. Last August, I was hoping to be 40 lbs less for the camping trip this August (not gonna happen). Maybe I can lose 10 before then! But I guess I'll just have to shoot for hitting 50 with 40 lbs less force via a healthier life style. How's that for setting short- and long-term goals?
[4] I am sooooo glad that the old soul and the boys have no school for the next 10 days. That means Mommy has 10 commuting-free days too! We're not going anywhere that I can think of [yet, though I desperately WANT to go somewhere] and we've got pets that we love love love for 360 days of the year right up until I feel like jumping in the car with the kids for an impromptu road trip [like I do now] and suddenly realize I can't do that because there's nobody to take care of the pets in my absence. Oh well. It'll be a good 10 days anyway! We're going to vacation at home! Hit the local attractions: Statue of Liberty, Bronx Zoo, USS Intrepid Air and Sea Museum, the Beach, Ice Cream shop, take a day cruise/boat ride, bike ride in a new park (got one in mind that overlooks the LI Sound), go north (to LI's Gold Coast), go east (to the end - aka. Montauk's fishing villages), etc. Should be fun... Maybe even more fun than actually going away because we all get to come home and get a good night's sleep in our own comfy beds every night and I don't even have to pack a suitcase... Yeah!
[5] I'm thankful I have the luxury of deciding whether or not and when my boys annoying little health issues should be addressed via surgery as necessary. Yes, we're considering surgery for another issue... but it's not a MAJOR issue. Actually, their health issues -- while important -- are, thankfully, not life threatening. More quality of life stuff and improved functioning kind of stuff. And, I am so very thankful for this and their general good health.
SPECIAL THANKS: I'm grateful for this beat up old roof over my head. Grateful that, with all this rain, it didn't leak (neither did the basement). And, grateful that -- unlike the man I pointed out to my old soul the other day who's living out of a shopping cart under the train trestle, all his possessions in plastic bags to keep them dry -- we have a home! And, we are incredibly lucky that we do!
Wednesday, June 24, 2009
Tuesday, June 23, 2009
Down Syndrome Awareness -- Your 6th Sense
I recently read this quote somewhere and it just stuck in my head.
"The intuitive mind is a sacred gift and the rational mind is a faithful servant. We have created a society that honors the servant and has forgotten the gift."
More than fifteen years ago, an old friend of mine held her then 6-month-old baby in her arms and knew there was something different about him. It took three years from that point before her son was diagnosed with Autism. Her pediatrician kept telling her not to worry. Everything was fine. But, she continued to tell every one that would listen, and many who did not listen -- at least not early on -- that something was not the same with this baby as it was with her two older children. He was her third... and she just KNEW.
I am a big believer in the intuitive mind. I often suggest that my fellow mothers/friends follow their gut when they're worried about something. I think the old television show had it wrong.... I think "Mother knows best", at least when it comes to her children and their development. Besides, there's certainly no harm in following the axiom, "when in doubt, check it out".
We have all had those 6th sense moments when we questioned, pursued and had our suspicions confirmed. Oncoming illness, fear of injury, avoidance of disaster, postponement of an event... until it feels right. As a SCUBA Dive Master, our mantra to students was, "when in doubt, sit it out" and "live to dive another day". God knows SCUBA diving can be a dangerous and even fatal sport if you're not feeling good and/or diving in optimal conditions. Childhood can be a dangerous sport too. For the safety of your children, if it doesn't feel right, why risk it? When Brian and Michael had their tonsillectomies/adenoidectomies, on day 4, I had to decide for myself whether to bring them in to the ER for rehydration or "wait and see". I was on the fence, the MD said it was up to me, my husband stood looking at me stunned that I honestly didn't know what to do. Finally, something told me to go... To err on the side of caution. As it turns out, both boys benefited from the rehydration -- one was dehydrated and the other was borderline. But, it was "the other", borderline-dehydrated guy -- Brian -- who, to our surprise, was diagnosed with pneumonia while we were there and ended up hospitalized for 3 days. Good thing I followed my gut!
Pursue, avoid, postpone until it feels right. As mothers, we need to heed whatever is dictated by that gut feeling -- like the one my friend had -- that tells us something is just not quite as it should be. Our 6th sense fields all kinds of stimulus that our conscious minds may ignore.
Albert Einstein might not have been a mother, but he sure was smart! So, go with your gut. Follow up on your intuition. And, honor the gift. It's there for a reason and early detection means early intervention means the best outcome possible in every scenario.
UPCOMING: I'm putting together instructions for a grass roots advocacy effort that each of us can easily pursue if/as we choose. It's a great way to think globally and act locally. Look for my Down Syndrome Awareness Series on "Back To School - Grass Roots Advocacy".
"The intuitive mind is a sacred gift and the rational mind is a faithful servant. We have created a society that honors the servant and has forgotten the gift."
Albert Einstein
More than fifteen years ago, an old friend of mine held her then 6-month-old baby in her arms and knew there was something different about him. It took three years from that point before her son was diagnosed with Autism. Her pediatrician kept telling her not to worry. Everything was fine. But, she continued to tell every one that would listen, and many who did not listen -- at least not early on -- that something was not the same with this baby as it was with her two older children. He was her third... and she just KNEW.
I am a big believer in the intuitive mind. I often suggest that my fellow mothers/friends follow their gut when they're worried about something. I think the old television show had it wrong.... I think "Mother knows best", at least when it comes to her children and their development. Besides, there's certainly no harm in following the axiom, "when in doubt, check it out".
We have all had those 6th sense moments when we questioned, pursued and had our suspicions confirmed. Oncoming illness, fear of injury, avoidance of disaster, postponement of an event... until it feels right. As a SCUBA Dive Master, our mantra to students was, "when in doubt, sit it out" and "live to dive another day". God knows SCUBA diving can be a dangerous and even fatal sport if you're not feeling good and/or diving in optimal conditions. Childhood can be a dangerous sport too. For the safety of your children, if it doesn't feel right, why risk it? When Brian and Michael had their tonsillectomies/adenoidectomies, on day 4, I had to decide for myself whether to bring them in to the ER for rehydration or "wait and see". I was on the fence, the MD said it was up to me, my husband stood looking at me stunned that I honestly didn't know what to do. Finally, something told me to go... To err on the side of caution. As it turns out, both boys benefited from the rehydration -- one was dehydrated and the other was borderline. But, it was "the other", borderline-dehydrated guy -- Brian -- who, to our surprise, was diagnosed with pneumonia while we were there and ended up hospitalized for 3 days. Good thing I followed my gut!
Pursue, avoid, postpone until it feels right. As mothers, we need to heed whatever is dictated by that gut feeling -- like the one my friend had -- that tells us something is just not quite as it should be. Our 6th sense fields all kinds of stimulus that our conscious minds may ignore.
Albert Einstein might not have been a mother, but he sure was smart! So, go with your gut. Follow up on your intuition. And, honor the gift. It's there for a reason and early detection means early intervention means the best outcome possible in every scenario.
UPCOMING: I'm putting together instructions for a grass roots advocacy effort that each of us can easily pursue if/as we choose. It's a great way to think globally and act locally. Look for my Down Syndrome Awareness Series on "Back To School - Grass Roots Advocacy".
Friday, June 19, 2009
Honest Scrap Award & Ceremony
Honest Scrap Award! I always wondered how people got all those award buttons on their blogs. Now I know.Many thanks to Monica Crumley who writes Monkey Musings at http://www.monicacrumley.blogspot.com/ for reading my scribblings and honoring me with the "Honest Scrap" award. At first glance I thought, perhaps, it was given in error as I don't scrapbook (not in public anyway) though many bloggers I know do. Then I came to realize that this award is not necessarily about scrapbooking. If you look at the definition of the word scrap, it means "fragment". God knows each of us puts real and honest fragments of our lives into our blogging. And, while we each blog for diverse reasons, the one thing we all have in common is our affinity and appreciation for the written word. I guess, that's what this award is all about.... Sharing honest fragments of our lives such that they touch other people. So honored by Monica, in turn, I am bound by the rules of acceptance as follows:
1) Say thanks and give a link to the presenter of the award
Thanks again, Monica at http://www.monicacrumley.blogspot.com/
2) Share "ten honest things" about myself.
OK, you want honesty, here goes:
- I don't do enough for and with my boys now that they're in full-time preschool. I know a lot of us Moms of children with special needs feel this way but I secretly think I'm the only one really not doing enough... That is, when they get home after being gone for 8 hours Monday through Friday, mostly I just let them be kids without special needs. Often I think I should be utilizing that little slice of time more wisely (instead of blogging, for instance), for more lessons, more structure, more repetition of needed skills, more routine. But, I don't! I desperately want them to be kids first.... But, I could be wrong and that's where the real guilt trip and conflict come in for me. This is hard, isn't it?
- I miss doing some of the fun things I did before I had kids... like SCUBA diving, kayaking, running, spontaneous travel and playing 2-man beach volley ball... Heck, sometimes I even miss working in corporate America with all the built in rewards and recognition (don't get much of that as a SAHM). I know I'll get back to at least some of these things at some point (and I might be sorry when I do). But, I miss them a little bit now. It's OK, you don't have to fix it by suggesting I get a baby sitter and go do these things... I CHOOSE every day to temporarily give these and other activities up in favor of focusing my attention on my children for now. They are only young once and they need it... and I will live to dive another day. I just hope I'm not 80 before that day comes, LOL. Thankfully, I am starting to add some of my old favorite activities back into my life little by little as the kids get older. But, I still miss the freedom of doing these things when the tide is right rather than waiting to indulge myself until the kids are at school or in bed. Note: I'm just being honest here for the Honest Blogger Award!
- I think my 3 kids -- 2 of whom happen to have been blessed with an extra 21st chromosome -- are absolutely phenomenal and I want everyone in the whole world to meet them so they can be changed forever for the better, the way I have been and everyone else who meets them. Of course, I'm their mom so I'm supposed to feel that way. And, I certainly hope you all feel that way about your kids. But, I secretly think it's more than that for me (LOL, I do)! So, you're all invited to my house to meet my boys and my old soul and see what I mean.
- My outside doesn't match my inside. That is, my physical self is not compatible with my psychological self. I had always been a very physically active person and the medically-prescribed modified-bed rest during the boys' pregnancy put an end to all that. Since starting my family 8 years ago, I've gained 30 lbs and I hate it hate it hate it. But, as the kids get older and a bit more independent, I've begun to work in more activity which means it's just a matter of time... It's a balancing act I've not perfected yet. It'll come (I hope).
- I am a very spiritual person with unshakable faith in God but I am not religious despite being raised Roman Catholic. And, my God is a nondenominational, multi-religion conglomerate God who is all-loving and all-forgiving. I don't go in for any of that God-fearin', hell-threatening stuff.
- I'm a rule follower! I believe that to maintain a civilized society we need to follow the rules we, effectively, put in place in this part of the world. I'm talking about the laws, rules and guidelines of our society! Of course, claiming I'm a rule follower flies in the face of #5 above because I don't follow many of the "rules" the Catholic church set down (not talking about the 10 Commandments here). I don't avoid eating meat on Fridays and I don't spend an hour in church each week... but I do wear my seat belt and when I have to talk on the phone when driving, I use a hands-free gadget to do so. [Having written this it seems to me that maybe the former "rules" are meant to address the well-being of the spirit and the latter address the well being of the flesh. Interesting thought... I'll have to over analyze that and get back to you.] I also believe in people suffering the consequences of their behavior which speaks to both sides, the flesh and the spirit. No, I don't follow the rules because I'm afraid of getting caught and being punished (the flesh). I follow them because I feel bad when I don't follow them (the spirit).
- That said, my spirit is willing but, sometimes, my flesh is weak! I am only human!
- My husband calls me "the idea guy" because I think WAAAY outside of the box to come up with creative solutions for the problems I encounter in every aspect of my life. That is, I tend to over analyze and go way beyond "normal" thinking to solve the problem at hand. It's like creative problem solving on steroids and I don't mind breaking social mores or inane societal rules when I'm operating outside the box (the box being the normal rules and solutions, I guess)... as long as the outcome benefits someone near and dear to me, or someone in need, without hurting anyone else in the process. That last part's key! While this may contradict # 6 above -- rule follower -- I do come up with some seriously creative ways to solve otherwise seemingly insurmountable problems. It works for me.
- I think my Buddhist leanings are getting in the way of getting things done around this old house. I fear I may have recently violated the "First, do no harm" and "that worm could be some body's mother" (we're talking old souls here) teachings. Seriously! In an attempt to create a privacy hedge, I have been trying to commit 20 donated (http://my.freecycle.org/) Rose of Sharon bushes/trees to the ground beside my barn. Unfortunately, I spend more time saving all of God's creatures than getting trees in the ground. So far, I've rescued literally countless worms and relocated at least 15 slugs, 6 snails and more than a few BIG (I'm talking quarter-sized bodies), hairy, black mama spiders with eggs. Collective awwww? No? But, only 5 trees made it to their eternal resting places. Not sufficient progress but I can't just ignore all of these newly evicted creatures in the process. What to do? What to do?
- I am a walking contradiction -- as evidenced by the honest little tidbits I've shared above -- with a few wild curve balls thrown in for good measure (read: might be dipping a toe in the crazy gene pool)... But, I am absolutely loving my life!
BONUS ROUND: Talking too much translates to writing too much! Guilty!
3) Present this award to 7 others whose blogs I find brilliant in content and/or design, or those who have encouraged me.
- Finnian's Journey at http://finniansjourney.blogspot.com/: parenting (including a child with Down syndrome), acceptance and advocacy and life in general
- Hanzely Clan News at http://hanzelyclan.blogspot.com/: parenting (including identical twins with a dual diagnosis of Down syndrome and autism), acceptance and advocacy and life in general
- Beneath the Wings at http://beneaththewings.blogspot.com/: parenting (including a child with Down syndrome), acceptance and advocacy and life in general
- Mothering By the Seat of My Pants at http://momseatofpants.blogspot.com/: parenting (including a child with Down syndrome), acceptance and advocacy and life in general
- Bubble Gum on My Shoe at http://snowdawegners.blogspot.com/: parenting (including a child on the autistic spectrum), acceptance and advocacy and life in general
- White Trash Mom at http://whitetrashmom.com/: laugh-out-loud funny parenting and life in general
- The Happiness Project at http://happiness-project.com/: thought provoking, helps me stay focused on my own happiness
Hey all you bloggers, here I come! When you've linked back here to claim your award and check out the rules [that I so love to follow], copy and paste it back to your posting place -- if you feel like displaying your trophy and carrying forward the good will -- update it with your own answers and publish away...
Thanks again, Monica! Now I have one of those cool buttons on my blog too!
Thursday, June 18, 2009
THANKFUL THURSDAY
I honestly CAN'T say I'm thankful for all this rain anymore. I don't want to say "enough" just in case someone with the power to change things is listening and we go dry dry dry! But, since He's always listening... Can you just squeeze in a few dry and sunny ones for us here and there please... So, what am I thankful for these days?
[1] I AM very thankful that after 4 postponements of the old soul's FUN DAY at school, they finally squeezed it in and we all got to enjoy the activities OUTSIDE on the ONE day it didn't rain in more than a week! Despite some overcast skies, the program went off without a hitch and all the kids got their chance to shine (even if the sun didn't). Liv's best events were the Bucket Brigade, the Hula-Hoop Chain, and the Pizza Relay. Yeah Liv!
[2] I'm thankful there are only 3 days left to this school year and that the academics and homework assignments are already a thing of the past... for summer at least! It takes a huge weight off the old soul's shoulders... and mine! This was a very tough year for her as she and her teacher clashed more than a little bit in personality -- Teach is Type A (100mph) and Liv is Type B (5mph) and never the twain shall meet! I've been assured that the powers that be have carefully attended to this personality clash and we will not have a repeat performance for next year based on a purposeful and conscientious selection for her 3rd grade teacher. From what I understand, the 2 words that best describe her assigned 3rd grade teachers' classroom are "peaceful and calm"! I am cautiously optimistic for a better [next] year!
[3] But, even more so... I am Psyched Psyched Psyched for a great summer with the old soul [while the boys take advantage of their extended school year services]. She and I plan to spend the summer snorkeling the alcoves at the Jones Beach inlet spying on juvenile tropicals that have washed up in the Gulf Stream. We'll be swimming with the fishes -- seahorses, puffers, angels, box fish and more. CAN'T wait. (SCUBA diving is close behind.) We'll also be kayaking, hiking and biking around Long Island, as well as visiting the zoos, aquariums and museums and practicing yoga every day. Oh, it's going to be a GREAT summer! (I'm just sorry the boys can't join us for all this fun but I am thankful there's an academic program available to address their specific developmental needs. Besides, we can do fun things like fairs and the beach on the weekends and they can play hooky for the cool weekday activities they'd be able to enjoy with us ... like the zoo! They're still a tad too young for snorkeling and kayaking.)
[4] I'm thankful I've gotten out to walk in the mornings, even a couple of times, with my sister given all this miserable weather. Certainly not enough and not as much as I'd like to but anything is better than nothing. And, I'm thankful that the running's getting a bit easier on my lungs. Time to increase the distance or speed or something, right?
[5] I'm also grateful that Weight Watchers is not allowed to quit me despite my abandoning the program as often as I do! I swear, I'm going back this week to start anew. The good news is those 8 lbs are still gone. The bad news is it could have been 20 by now had I stayed with the program. But, if I'm still breathing (and I was last time I checked), then I'm still trying. It'll come off.... eventually!
And, a special "Thank You God!" that my family members -- especially my children -- are all healthy. I'm asking for special prayers for 2 children who are in desperate need of some divine intervention: for Marcel (a young baby who mysteriously slipped into a coma ) and for Sean (a teen paralyzed by a freak diving accident). Please remember them in your prayers. And, thank YOU!
[3] But, even more so... I am Psyched Psyched Psyched for a great summer with the old soul [while the boys take advantage of their extended school year services]. She and I plan to spend the summer snorkeling the alcoves at the Jones Beach inlet spying on juvenile tropicals that have washed up in the Gulf Stream. We'll be swimming with the fishes -- seahorses, puffers, angels, box fish and more. CAN'T wait. (SCUBA diving is close behind.) We'll also be kayaking, hiking and biking around Long Island, as well as visiting the zoos, aquariums and museums and practicing yoga every day. Oh, it's going to be a GREAT summer! (I'm just sorry the boys can't join us for all this fun but I am thankful there's an academic program available to address their specific developmental needs. Besides, we can do fun things like fairs and the beach on the weekends and they can play hooky for the cool weekday activities they'd be able to enjoy with us ... like the zoo! They're still a tad too young for snorkeling and kayaking.)
[4] I'm thankful I've gotten out to walk in the mornings, even a couple of times, with my sister given all this miserable weather. Certainly not enough and not as much as I'd like to but anything is better than nothing. And, I'm thankful that the running's getting a bit easier on my lungs. Time to increase the distance or speed or something, right?
[5] I'm also grateful that Weight Watchers is not allowed to quit me despite my abandoning the program as often as I do! I swear, I'm going back this week to start anew. The good news is those 8 lbs are still gone. The bad news is it could have been 20 by now had I stayed with the program. But, if I'm still breathing (and I was last time I checked), then I'm still trying. It'll come off.... eventually!
And, a special "Thank You God!" that my family members -- especially my children -- are all healthy. I'm asking for special prayers for 2 children who are in desperate need of some divine intervention: for Marcel (a young baby who mysteriously slipped into a coma ) and for Sean (a teen paralyzed by a freak diving accident). Please remember them in your prayers. And, thank YOU!
Wednesday, June 17, 2009
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