I was pondering today about all that Andrew has accomplished. All that he has lost in his struggles with his neurological disorder and all that he uncovers in the simplicity of his life. The words came to me.. he just "is." He has no past. He has no future. He only has today. The way his brain is wired he lives for what is "next"... be it lunch, dinner, going out, working, computer, bowling... whatever is in front of him is what his life is like NOW. Being present for him is not a concept it is who he is.
In thinking about his life.. his disability and his abilities it came to me that he is a "conduit" a means to measure, a barometer of sorts of the measure of a person. He cannot measure you by language, social banter, shared stories, memories or clothing styles, color of skin. He measures you by your inner worth. His measuring skills are surgically sharp. I have learned that he is usually right on.... dead on in his evaluations of people.
There are a handful of reality shows, which I admit I watch... Alone, Naked and Afraid... It is interesting to me that people measure themselves physically. What can I withstand. How hungry can I get, how fearful, how thirsty, cranky, tenacious. But you see its all about THEM. They are measuring themselves against themselves... there is no other measure but a self serving one. Can "I" endure. Can "I " survive. Can I boast about MY feats, my tenacity.. Interestingly, although on the outside it seems to be self effacing, in fact it is quite self affirming. Not a bad thing, but I would have to broach the question what about ... integrity, compassion, tenacity for another, self sacrifice, kindness, empathy? How is that tested?
What I have seen as people come and go through our lives as "caregivers" that many that have appeared on our doorstep as caregivers are in fact far removed from that premise of giving care.
Andrew has many facets of his personality that can be trying..he is noisy.. he is slow.. he is noncommunicative verbally, he needs help with just about everything. What I have perceived over time that he brings out the very best or the very worst in the human spirit. If you are a giving compassionate person initially, you become more so after watching his struggles. If you are not a kind and caring person, it quickly becomes evident that those qualities that should enhance your compassion in fact brings out impatience, annoyance and neglect.
Andrew is in fact a wonderful judge of quality without ever saying a word, and I "LISTEN" to him. I listen to his eyes the way they gaze over someone, do they linger with interest, or are they darting, distant and furtive. For those who have gained his trust, he stares intently with his blue eyes locked on yours even fleetingly... it is a good sign you are in the trust club. Or for those who have not demonstrated patience or compassion, his glance is brief and/or nonexistent.
I learn something from him every day, and I have learned to listen to him nonverbally, watching his cues, observing his gaze. He tells me everything I need to know about people without ever saying a single word... I am blessed that I am on his team...
cate
Tuesday, May 24, 2016
Tuesday, October 6, 2015
Fall - Finally - New ideas for the shop - Faux and Fresh
A new idea for the shop - combining the best of fresh florals with paper flowers.
Blending the beautiful Italian crepe papers with a lovely fresh mix, add a vintage twist and voila a sweet new idea for an old favorite. Flowers. flowers. flowers. who can resist that little wistful bouquet... Cheers the worst days sometimes with bright blooms.
For fall I am working on some darker colors, but also thinking forward toward spring.... but one step at a time.
All will be available in our Etsy shop.
Blending the beautiful Italian crepe papers with a lovely fresh mix, add a vintage twist and voila a sweet new idea for an old favorite. Flowers. flowers. flowers. who can resist that little wistful bouquet... Cheers the worst days sometimes with bright blooms.
For fall I am working on some darker colors, but also thinking forward toward spring.... but one step at a time.
All will be available in our Etsy shop.
 |
| Cranberry Blooms |
 |
| Magenta crepe paper |
 |
| Italian crepe paper blooms in a rustic bouquet. |
 |
| crepe paper bloom in magenta |
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| Spot the imposter in fresh florals |
Tuesday, September 29, 2015
Petals and Stems - a new face for Papercatz - Etsy marketplace
I have had the time to think quite a bit these last few months... sales have lagged and then hit the wall with a resounding thud.. not sure why, but Etsy has become a corporate giant that seems to swallow up its little stores... in an effort to increase their revenue and visibility new rules and regulations have been initiated for selling, shipping, mass manufacturing, that seem to make the "little guy" all but disappear..... and I am one of those little guys. I began to think that my shop was failing. My products failing, but I am realizing that no that is not the case. In fact my products have improved, become more diverse and more customizable and more one of a kind. As I improve and grow, my visibility on Etsy disappears. I am lost and drowning in a sea of products, shops and sellers.. Millions of listings, millions of views, how does one slog through all of that to get to me? They don't? They cannot.
It is not that my products have been viewed and dismissed, my products have never been found. On those occasions where they are, my buyers have been very enthusiastic and happy with the products... no view equals no sales. No sales equals no work for Andrew who is the heart of this operation.
Recently he has been making custom hand stamped papers that are turned into flowers that are truly made with care and love and are one of a kind. To see this all stop and come to a halting stop is heartbreaking for me. I would rather give the flowers away than stop.... I would rather pass them out at hospitals or donate to charities to cheer someone than stop. To stop is to abandon my dream that Andrew would have a job, a creative outlet.. but it is hard so hard to keep going sometimes. I only have to look at him stamping, smiling and engaged and I renew my self and begin again. I do it for him. I do it for love.
We will be focusing on "petals and stems" a branch of Papercatz focusing on the relationship of Andrew's involvement in our paper making.... he is responsible for cutting all of the stems for our flowers as well as stamping the papers. I am responsible for assembling all of the stems. Together we make a simply determined team.
It is not that my products have been viewed and dismissed, my products have never been found. On those occasions where they are, my buyers have been very enthusiastic and happy with the products... no view equals no sales. No sales equals no work for Andrew who is the heart of this operation.
Recently he has been making custom hand stamped papers that are turned into flowers that are truly made with care and love and are one of a kind. To see this all stop and come to a halting stop is heartbreaking for me. I would rather give the flowers away than stop.... I would rather pass them out at hospitals or donate to charities to cheer someone than stop. To stop is to abandon my dream that Andrew would have a job, a creative outlet.. but it is hard so hard to keep going sometimes. I only have to look at him stamping, smiling and engaged and I renew my self and begin again. I do it for him. I do it for love.
We will be focusing on "petals and stems" a branch of Papercatz focusing on the relationship of Andrew's involvement in our paper making.... he is responsible for cutting all of the stems for our flowers as well as stamping the papers. I am responsible for assembling all of the stems. Together we make a simply determined team.
Tuesday, August 18, 2015
Autism ..Adulthood...Navigating stormy waters.. Yikes your compass has gone missing.
I have no magic bullets or silver bullets to ward off hungry predators destined to take down the unprotected or unaware. I am, after all, only a parent. and I say that tongue and cheek since I believe parents are the singular greatest and most powerful force in the universe.
Parents effect change, stimulate growth, encourage conversation and promote opportunities for their children and in this case, their adult child with autism or in the case of many parents their adult children with disabilities.
My life has been forever changed by the sets of circumstances I have found myself presented with... navigating these stormy waters, floating to the top and maintaining bouyancy is no laughing matter. It can be a screaming matter - a crying matter - but no easy matter.
The demands of the job are not contained within any personnel manual and the hours on the clock far outweigh the hours off the clock. There is no clock to punch... no EASY button.. The answers are not forthcoming and the adult with the disability provides few clues to guide the solutions.
For many, myself included, autism was ONLY the tip of the iceberg... traumatic brain injury, seizure disorder, gait problems, toileting problems... only compounded the treatment, the response and the outlook. How does one plan for something one does not understand? There is not a simple blood test, a snap diagnosis and a fabulous treatment strategy and voila resolution of symptoms. There is a guess. There is a trial of this and a trial of that, medications, behavioral strategies.. tried and true solutions? NO.
Parents and caregivers are in for the long term ride of their life... not much rest.. not much relaxation and far too much stress to deal with on a consistent basis and far too few strategies to relieve this stress. Services are different in each state, county and territory. Services are based on budget, monies dedicated to this cause, and the release of this budget each year. There are no guarantees and this just adds to the stress load. You are expected and wish to care for your loved one, but this is NO easy task and it is expensive and convoluted.
Just maneuvering social security ( we were denied on the first round due to his lack of a "work record"). He had no work record as he is totally dependent on adult supervision just to function, eat, toilet himself etc. That had to be resubmitted and adjusted and eventually approved. Guardianship, power of attorney, medicaid application, budget applications.. this is not for the faint of heart. This is all sandwiched in between caring for this individual as well.
There is no "off time" or "paper work down time." This is not a "real job" in the sense of having a lunch break or paid time off. All of this care, love and hard work has to be accomplished to keep the individual safe and monitored, and when the physical tasks completed then and only then (and it may be at midnight) that the paperwork part of the job can be undertaken. Phone calls, waiting for messages, more phone calls and it is endless. Taking care of the paper work portion of caring for an an individual with a disability is a job unto itself. There is no one to call.. no one to ask... trial and error.
A full time job could be just the advocacy/paper work part of this process. If hospital stays are involved, more paperwork, more phone calls, more stress. which reminds me the insurance company never called me back about dental coverage and that was a week ago...
I created my little paper company to create employment for Andrew, since I knew there was not now nor would there ever be a job for him in the outside world. He is far too complicated. Far too needy and frankly scary for most people to want to deal with effectively. He can have outbursts, behavioral melt downs and frustration. He can also experience a seizure. All of these things complicate delivery of care. It takes two of us for the most part to care for him, sometimes three.
This last year has presented even more challenges in terms of employment for myself and his dad, some health issues and things outside autism that effect delivery of service. We are told we are "lucky" to have the services we have, but most days I don't feel that "lucky" to have a son who suffers in the way that he does. But I AM lucky to have him in my life. I have learned many lessons in tenacity and love in dealing with all of those things that surround his care.
There are not too many filters that soften the blows for parents and/or caregivers to ease their stress or their burn out. If family members support this individual you are truly blessed. I believe we have been checked off on the friendship.family imaginary questionnaire in the box labeled "too complicated" and people have just moved on, I guess figuring that we'll get by or we'll figure it out... and so we do.
This is a common complaint among families of caregivers... What happened to the support? Where are friends or family members? Ahhh they drift away.. They mean well, but this is a long bumpy ride and few can maintain the tenacity it takes to continue the journey. I understand ....love fuels the journey and it is the only fuel on board. Without love you do not survive this quest.
For you see, mental illness, autism, muscular dystrophy, Downs syndrome, traumatic brain injury, epilepsy, Alzheimers etc. they do not resolve - they hang around and visit for the life of the family and it is the rare and treasured individual who can take this journey with you and your son or daughter. If you have these type of people in your life, hug them daily.
I feel each year I have turned another corner, tackled another obstacle, forged a new road, created a new strategy..hoped a new hope, and for the most part I try, but the road is isolating and difficult to maintain on your own steam and strength.
I finish off this summer with a bit of exhaustion, a trickle of hope and a wisp of a prayer for some relief, laughter and joy.
The show and the shop must go on... and despite the exhaustion I vow it will....
Peace
Cate :)
Parents effect change, stimulate growth, encourage conversation and promote opportunities for their children and in this case, their adult child with autism or in the case of many parents their adult children with disabilities.
My life has been forever changed by the sets of circumstances I have found myself presented with... navigating these stormy waters, floating to the top and maintaining bouyancy is no laughing matter. It can be a screaming matter - a crying matter - but no easy matter.
The demands of the job are not contained within any personnel manual and the hours on the clock far outweigh the hours off the clock. There is no clock to punch... no EASY button.. The answers are not forthcoming and the adult with the disability provides few clues to guide the solutions.
For many, myself included, autism was ONLY the tip of the iceberg... traumatic brain injury, seizure disorder, gait problems, toileting problems... only compounded the treatment, the response and the outlook. How does one plan for something one does not understand? There is not a simple blood test, a snap diagnosis and a fabulous treatment strategy and voila resolution of symptoms. There is a guess. There is a trial of this and a trial of that, medications, behavioral strategies.. tried and true solutions? NO.
Parents and caregivers are in for the long term ride of their life... not much rest.. not much relaxation and far too much stress to deal with on a consistent basis and far too few strategies to relieve this stress. Services are different in each state, county and territory. Services are based on budget, monies dedicated to this cause, and the release of this budget each year. There are no guarantees and this just adds to the stress load. You are expected and wish to care for your loved one, but this is NO easy task and it is expensive and convoluted.
Just maneuvering social security ( we were denied on the first round due to his lack of a "work record"). He had no work record as he is totally dependent on adult supervision just to function, eat, toilet himself etc. That had to be resubmitted and adjusted and eventually approved. Guardianship, power of attorney, medicaid application, budget applications.. this is not for the faint of heart. This is all sandwiched in between caring for this individual as well.
There is no "off time" or "paper work down time." This is not a "real job" in the sense of having a lunch break or paid time off. All of this care, love and hard work has to be accomplished to keep the individual safe and monitored, and when the physical tasks completed then and only then (and it may be at midnight) that the paperwork part of the job can be undertaken. Phone calls, waiting for messages, more phone calls and it is endless. Taking care of the paper work portion of caring for an an individual with a disability is a job unto itself. There is no one to call.. no one to ask... trial and error.
A full time job could be just the advocacy/paper work part of this process. If hospital stays are involved, more paperwork, more phone calls, more stress. which reminds me the insurance company never called me back about dental coverage and that was a week ago...
I created my little paper company to create employment for Andrew, since I knew there was not now nor would there ever be a job for him in the outside world. He is far too complicated. Far too needy and frankly scary for most people to want to deal with effectively. He can have outbursts, behavioral melt downs and frustration. He can also experience a seizure. All of these things complicate delivery of care. It takes two of us for the most part to care for him, sometimes three.
This last year has presented even more challenges in terms of employment for myself and his dad, some health issues and things outside autism that effect delivery of service. We are told we are "lucky" to have the services we have, but most days I don't feel that "lucky" to have a son who suffers in the way that he does. But I AM lucky to have him in my life. I have learned many lessons in tenacity and love in dealing with all of those things that surround his care.
There are not too many filters that soften the blows for parents and/or caregivers to ease their stress or their burn out. If family members support this individual you are truly blessed. I believe we have been checked off on the friendship.family imaginary questionnaire in the box labeled "too complicated" and people have just moved on, I guess figuring that we'll get by or we'll figure it out... and so we do.
This is a common complaint among families of caregivers... What happened to the support? Where are friends or family members? Ahhh they drift away.. They mean well, but this is a long bumpy ride and few can maintain the tenacity it takes to continue the journey. I understand ....love fuels the journey and it is the only fuel on board. Without love you do not survive this quest.
For you see, mental illness, autism, muscular dystrophy, Downs syndrome, traumatic brain injury, epilepsy, Alzheimers etc. they do not resolve - they hang around and visit for the life of the family and it is the rare and treasured individual who can take this journey with you and your son or daughter. If you have these type of people in your life, hug them daily.
I feel each year I have turned another corner, tackled another obstacle, forged a new road, created a new strategy..hoped a new hope, and for the most part I try, but the road is isolating and difficult to maintain on your own steam and strength.
I finish off this summer with a bit of exhaustion, a trickle of hope and a wisp of a prayer for some relief, laughter and joy.
The show and the shop must go on... and despite the exhaustion I vow it will....
Peace
Cate :)
Monday, August 17, 2015
Summer Work - Fall expectations- The making of paper flowers
I am going to do one 2 day show this fall and have been trying to get products ready for it... thought I would post some pictures to remind myself how much progress I have made.
crepe flowers are a new addition to the shop and I believe a beautiful one - lovely as keepsakes from a wedding event, bridal shower, birthday, and especially anniversaries. Flowers are too beautiful to throw away... combine fresh flowers with paper keepsakes..
crepe flowers are a new addition to the shop and I believe a beautiful one - lovely as keepsakes from a wedding event, bridal shower, birthday, and especially anniversaries. Flowers are too beautiful to throw away... combine fresh flowers with paper keepsakes..
August - a month of musings
It has been a tough summer... hotter than usual ...drier than usual and exceptionally challenging both with the simple things... garden and flowers and with the more complex things... selling, creating, marketing, advertising... and continuing to hope that I have what it takes to make my Etsy shop reasonably successful.
This summer has challenged me in ways I have not felt before, perhaps I am in a different place, different mind set... more susceptible to self doubt... but I find myself dreading opening that page, looking at my shop, trying to avoid checking in, but feeling guilty that I have waiting for me to respond and I am missing in action.
Where have all the customers gone? I have been singing that tune most of the summer... crashing precipitiously in June into the true summer doldrum of small shop stall.... It challenges the owner to think a bit differently... what other clients/customer/or buyers might be out there. Etsy cannot be my only venue, outlet and experience... but I often hogtie my own hands afraid to branch out further, afraid to try new lanes, roads and pathways to selling and marketing...
Self doubt creeps in and acts an invisible cord, not around my hands, but around my mind, my creativity, my spark, and my belief in myself. without a believe in oneself most forward motion cannot take place... and so I sit with flower "block" not sure how I want to proceed, why or where, and YEt at the same time, my flowers have grown on their own time and space into better products than the ones that were original to the shop... Have I lost my confidence? If so what do I need to do to find it again?
Life is a game... full of steps, ladders, mountains, streams and oceans... some are bigger obstacles to tackle than others, but all need to be dealt with. I never quit till the last chip falls and as I close I whisper to myself "flower power."
we all have our hurdles, grab a hand, say a prayer and leap....
cate :)
This summer has challenged me in ways I have not felt before, perhaps I am in a different place, different mind set... more susceptible to self doubt... but I find myself dreading opening that page, looking at my shop, trying to avoid checking in, but feeling guilty that I have waiting for me to respond and I am missing in action.
Where have all the customers gone? I have been singing that tune most of the summer... crashing precipitiously in June into the true summer doldrum of small shop stall.... It challenges the owner to think a bit differently... what other clients/customer/or buyers might be out there. Etsy cannot be my only venue, outlet and experience... but I often hogtie my own hands afraid to branch out further, afraid to try new lanes, roads and pathways to selling and marketing...
Self doubt creeps in and acts an invisible cord, not around my hands, but around my mind, my creativity, my spark, and my belief in myself. without a believe in oneself most forward motion cannot take place... and so I sit with flower "block" not sure how I want to proceed, why or where, and YEt at the same time, my flowers have grown on their own time and space into better products than the ones that were original to the shop... Have I lost my confidence? If so what do I need to do to find it again?
Life is a game... full of steps, ladders, mountains, streams and oceans... some are bigger obstacles to tackle than others, but all need to be dealt with. I never quit till the last chip falls and as I close I whisper to myself "flower power."
we all have our hurdles, grab a hand, say a prayer and leap....
cate :)
Thursday, August 6, 2015
How I lost and found myself - musings from the brink....
I have always felt that overall I have a cheery disposition...not smiling all the time, funny, laughing and robustly and overtly friendly and outgoing and full of good cheer, but the more intimate type of cheery... i.e. happy in one's own skin...happy with little things...clouds...blue skies..mountains...nature...silent vistas and ocean views... opening my sun roof and watching clouds zip by above brings me great joy.. and almost embarrassingly a feeling of elation...
I don't share much of this happy internal frenzy with anyone as I don't think they would understand or perhaps think me daft or simple... and simple is a term I can proudly own... simple... sincere... and tenacious.. I'd like to hope these are some of my qualities. I aspire to be all three.
I have done much thinking this last year and had just reason to reexamine EVERYTHING... where I am going with my Etsy shop... how I will care for Andrew... the reason, after all, for the very existence of the Etsy shop, how to promote my business, how to continue, how to feel successful and creative. Mixed in with some personal concerns about health, business and parental concern are other factors, most of which I cannot control... jobs, spousal health and well being, and overall sense of a crazy upside economy..the last of which makes no sense to me and seems to be on a crash course for disaster.
I try to remove myself and inwardly retreat from as much of the perils of civilization that I can possibly achieve and still live in New Jersey, land of what seems to be a BILLION people... all at arm's length and ready to intrude and happy to intrude in your personal space at any moment.
And so it came that I had to find a "happy" place for myself.. a sanctuary from all that is impossible to maneuver, redirect or change... a place and a time to ask myself - ask my very core of being..... DO YOU NEED TO HAVE A PARTNER IN LIFE TO BE TRULY HAPPY - OR is happiness a state of mind that does not rely on a partner?
How often have I said "You make me sad or you make me happy." WHY should anyone rely on someone else to make them sad or happy. Is this is a coexistence society... where isolation is the root of unhappiness and togetherness the root of happiness? And what if the "togetherness" you yearn for does not meet your expectations? Are you then doomed to be unhappy eternally until and/if/when you meet another "partner" to share your life with?
I am always impressed by successfully happy people, creating, exploring and enjoying life on THEIR terms... and I believe it is the ONLY way for me to exist, thrive and return to a reasonably stable state of contentment.
I don't believe every day can or should be happy, but I am diabolically opposed to the idea that one's happiness must depend on the attention, love or companionship of another..
I suppose that is why Thoreau spent so much time alone... perhaps he, too was exploring the realms of "aloneness" as a means to determine his own worth, or sense of self satisfaction.
To gain happiness in the small things... to be willing to explore..stretch your boundaries and unfailingly try new things should be the seed that you sow not for others but for yourself and only yourself...
Ponderings on this beautiful Thursday.....
Cate :)
I don't share much of this happy internal frenzy with anyone as I don't think they would understand or perhaps think me daft or simple... and simple is a term I can proudly own... simple... sincere... and tenacious.. I'd like to hope these are some of my qualities. I aspire to be all three.
I have done much thinking this last year and had just reason to reexamine EVERYTHING... where I am going with my Etsy shop... how I will care for Andrew... the reason, after all, for the very existence of the Etsy shop, how to promote my business, how to continue, how to feel successful and creative. Mixed in with some personal concerns about health, business and parental concern are other factors, most of which I cannot control... jobs, spousal health and well being, and overall sense of a crazy upside economy..the last of which makes no sense to me and seems to be on a crash course for disaster.
I try to remove myself and inwardly retreat from as much of the perils of civilization that I can possibly achieve and still live in New Jersey, land of what seems to be a BILLION people... all at arm's length and ready to intrude and happy to intrude in your personal space at any moment.
And so it came that I had to find a "happy" place for myself.. a sanctuary from all that is impossible to maneuver, redirect or change... a place and a time to ask myself - ask my very core of being..... DO YOU NEED TO HAVE A PARTNER IN LIFE TO BE TRULY HAPPY - OR is happiness a state of mind that does not rely on a partner?
How often have I said "You make me sad or you make me happy." WHY should anyone rely on someone else to make them sad or happy. Is this is a coexistence society... where isolation is the root of unhappiness and togetherness the root of happiness? And what if the "togetherness" you yearn for does not meet your expectations? Are you then doomed to be unhappy eternally until and/if/when you meet another "partner" to share your life with?
I am always impressed by successfully happy people, creating, exploring and enjoying life on THEIR terms... and I believe it is the ONLY way for me to exist, thrive and return to a reasonably stable state of contentment.
I don't believe every day can or should be happy, but I am diabolically opposed to the idea that one's happiness must depend on the attention, love or companionship of another..
I suppose that is why Thoreau spent so much time alone... perhaps he, too was exploring the realms of "aloneness" as a means to determine his own worth, or sense of self satisfaction.
To gain happiness in the small things... to be willing to explore..stretch your boundaries and unfailingly try new things should be the seed that you sow not for others but for yourself and only yourself...
Ponderings on this beautiful Thursday.....
Cate :)
Wednesday, July 29, 2015
Flowers take center stage in the fight against autism
How do flowers take center stage in the fight against autism you ask yourself, scratching your head and thinking I have gone off the deep end... well perhaps I have and perhaps it is hard to understand what flowers have to do with autism.
In fact, flowers, paper flowers, are at the root of my/our existence. They stand between lack of purpose, lack of engagement in the world around us and they create bonds, connections and common ground. They are my autistic "social media."
Without a purpose, a job so to speak, Andrew, who has been mute and unable to converse without an assistive device is left without a reason to engage, without a purpose to be part of this larger world. Instead he stays locked up and locked into his own very small universe.
By creating flowers and keeping our Etsy shop alive I feel connected and determined to give him and myself purpose.
During our work with creating paper flowers, he appears to have a sense of self worth... I cannot ask him, but I can see by the look on his face, the smiles, the eye contact that I have scored a home run.
There are jobs we have determined that he dislikes, by his vocalizations and facial expressions...painting being one of those jobs.... and NO he is not a savant.. he does not paint Picasso renditions or launch off into a self portrait. He hands the paint brush back with a look of disgust... too messy... to uncontrolled.. too something... he just does not like it.. and so we no longer pursue painting.
However, we have discovered a new passion for him... he loves to stamp.. and stamp and stamp, and so he has developed a whole line of flowers that are his alone... Hand stamped and hand created... hand painted by ME since I do love to paint. (We don't share the abhorrence for painting gene).
He recently celebrated his 21st birthday.. I am floored by all that has occurred over the years and discouraged by the lack of forward movement both in the job situation for adults with disabilities and the living conditions available for them. (Group homes with poorly trained rotating staff members does not entice me to think good thoughts about this placement for him or others with disabilities). We are not doing a good job as a society. We have emptied the institutions only to find there is not much better for these individuals in life after institutions and developmental centers.
And so it goes for Andrew that we start each day with flowers.. and flowers save us.. they give us purpose and hope.
Andrew had a hand or finger in all of the products seen below.. either cutting the paper or cutting the wire stems. I am proud of him and proud of our little flower business... we often struggle ... but we never give up..
Please visit our Etsy shop at Papercatz.etsy.com to see more products...
Peace,
Cate & Andrew
In fact, flowers, paper flowers, are at the root of my/our existence. They stand between lack of purpose, lack of engagement in the world around us and they create bonds, connections and common ground. They are my autistic "social media."
Without a purpose, a job so to speak, Andrew, who has been mute and unable to converse without an assistive device is left without a reason to engage, without a purpose to be part of this larger world. Instead he stays locked up and locked into his own very small universe.
By creating flowers and keeping our Etsy shop alive I feel connected and determined to give him and myself purpose.
During our work with creating paper flowers, he appears to have a sense of self worth... I cannot ask him, but I can see by the look on his face, the smiles, the eye contact that I have scored a home run.
There are jobs we have determined that he dislikes, by his vocalizations and facial expressions...painting being one of those jobs.... and NO he is not a savant.. he does not paint Picasso renditions or launch off into a self portrait. He hands the paint brush back with a look of disgust... too messy... to uncontrolled.. too something... he just does not like it.. and so we no longer pursue painting.
However, we have discovered a new passion for him... he loves to stamp.. and stamp and stamp, and so he has developed a whole line of flowers that are his alone... Hand stamped and hand created... hand painted by ME since I do love to paint. (We don't share the abhorrence for painting gene).
He recently celebrated his 21st birthday.. I am floored by all that has occurred over the years and discouraged by the lack of forward movement both in the job situation for adults with disabilities and the living conditions available for them. (Group homes with poorly trained rotating staff members does not entice me to think good thoughts about this placement for him or others with disabilities). We are not doing a good job as a society. We have emptied the institutions only to find there is not much better for these individuals in life after institutions and developmental centers.
And so it goes for Andrew that we start each day with flowers.. and flowers save us.. they give us purpose and hope.
Andrew had a hand or finger in all of the products seen below.. either cutting the paper or cutting the wire stems. I am proud of him and proud of our little flower business... we often struggle ... but we never give up..
Please visit our Etsy shop at Papercatz.etsy.com to see more products...
Peace,
Cate & Andrew
Friday, June 19, 2015
Catching up! - Summer begins...changing...growing..evolving
I have been negligent of my blog.. a place to sit and vent...talk to myself and think out loud...even if no one is listening..,. it feels good to speak to myself and perhaps gain some insight and hopefully wisdom... Reflecting on thoughts at times allows a glimpse into changes that needed to be made.
During this last winter I gave a lot of thought to change... and movement with my flowers. I am happy making flowers, but not necessarily happily if I don't change, improve, and transition to new ideas.. I am not enthralled with ho hum and repetitive and find myself flitting from one idea to another.. easily thrown off track by different styles, ideas...and questioning myself what do I want to do.. how do I want to do it and how do I want others to perceive my little business.
It is important for me to stay true to ideals and to myself... not get lost or sidetracked by what is popular or what others are doing... to the point of emulating another's creation, but taking into consideration change, movement and improving what I have already created.
BIG flowers are BIG this year.. and I love them... CRICUT die cutting remains a staple of the trade.. do I change my patterns to meet these challenges and speed up the process of flower making or do I stay true to my own petite flowers... do petite flowers have a place... I had to answer my own queries... the answer was.is Yes... STAY TRUE TO WHAT YOU DO BEST but at the same time.. improving, change... grow... to meet your own standards and your own expectations... and so that question was put to bed. I am not going BIG and I am not going to die cutting... it would pull me away from my main goal and purpose... the only purpose of this shop is to give back... and so I will continue to make smaller flowers that andrew can help with ... to leave him out would be to leave my path... to stray from my purpose and I am unwilling to do that. He must be included injn our shop's products... if he is not I won't feel fulfilled.
We continue our efforts to give back.. having made a donation to the South Jersey Kids Trust in March of this year and we offer continue baking organic dog treats for donation to the Burlington Township animal shelter.
And so we move forward and it seems right and proper to add some new pictures since I have been amiss at keeping up!!!
During this last winter I gave a lot of thought to change... and movement with my flowers. I am happy making flowers, but not necessarily happily if I don't change, improve, and transition to new ideas.. I am not enthralled with ho hum and repetitive and find myself flitting from one idea to another.. easily thrown off track by different styles, ideas...and questioning myself what do I want to do.. how do I want to do it and how do I want others to perceive my little business.
It is important for me to stay true to ideals and to myself... not get lost or sidetracked by what is popular or what others are doing... to the point of emulating another's creation, but taking into consideration change, movement and improving what I have already created.
BIG flowers are BIG this year.. and I love them... CRICUT die cutting remains a staple of the trade.. do I change my patterns to meet these challenges and speed up the process of flower making or do I stay true to my own petite flowers... do petite flowers have a place... I had to answer my own queries... the answer was.is Yes... STAY TRUE TO WHAT YOU DO BEST but at the same time.. improving, change... grow... to meet your own standards and your own expectations... and so that question was put to bed. I am not going BIG and I am not going to die cutting... it would pull me away from my main goal and purpose... the only purpose of this shop is to give back... and so I will continue to make smaller flowers that andrew can help with ... to leave him out would be to leave my path... to stray from my purpose and I am unwilling to do that. He must be included injn our shop's products... if he is not I won't feel fulfilled.
We continue our efforts to give back.. having made a donation to the South Jersey Kids Trust in March of this year and we offer continue baking organic dog treats for donation to the Burlington Township animal shelter.
And so we move forward and it seems right and proper to add some new pictures since I have been amiss at keeping up!!!
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| New Italian crepe paper party favors |
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| Rustic hand cut birch slices |
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| Some new color combinations for our Mason jar flowers |
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| A colorful Mason Jar Pastel collection. New Products coming soon! |
Monday, January 5, 2015
The new year
We ushered in the new year quietly ... it has been a year of hope, a year of change, a year of turmoil and a year of determination.
This year we joined the many individuals with autism who develop seizure disorders in their lifetime, and that was a club I was hoping not to join.
Little is said of adults with autism - and when I think of autism support - autism awareness - I think of the preschool kids, the young toddlers newly diagnosed struggling for answers. If I have learned something over these last 17 years I have learned there are no solidly true answers...there are only more questions.
With all of the support, all of the awareness the problems remain, the lack of activities, engagement and stimulation remains outstandingly lacking. There is an imaginary cliff that at age 18 or 20 drops individuals with autism into a swirling pot of uncertainty... where to now? what's next?
The support these individuals and their families received during the school years has been abruptly stopped. There is no "college or post high school next step." There is loss of routine, loss of a purpose, loss of the social encounters that had happened daily during school days turning into isolation, withdrawal, and regression. Skills learned now become skills lost.
Parents are left with tough choices: Place their now young adult children in supervised day programs... look for placement in group homes... hope for a budget to allow them to receive services at home and in the community.. or support their children themselves becoming caretaker, teacher, nurse, behaviorist, cook and chauffeur. It is a life long committment.
It is not one that I shy away from but I am deeply in awe of all of the parents who do this every day like myself... it is overwhelming. Some days more than others.
I live in the moment, as does Andrew... and we applaud the families who are making strides and providing an enriched environment to their sons or daughters with autism.
Cheers
cate
This year we joined the many individuals with autism who develop seizure disorders in their lifetime, and that was a club I was hoping not to join.
Little is said of adults with autism - and when I think of autism support - autism awareness - I think of the preschool kids, the young toddlers newly diagnosed struggling for answers. If I have learned something over these last 17 years I have learned there are no solidly true answers...there are only more questions.
With all of the support, all of the awareness the problems remain, the lack of activities, engagement and stimulation remains outstandingly lacking. There is an imaginary cliff that at age 18 or 20 drops individuals with autism into a swirling pot of uncertainty... where to now? what's next?
The support these individuals and their families received during the school years has been abruptly stopped. There is no "college or post high school next step." There is loss of routine, loss of a purpose, loss of the social encounters that had happened daily during school days turning into isolation, withdrawal, and regression. Skills learned now become skills lost.
Parents are left with tough choices: Place their now young adult children in supervised day programs... look for placement in group homes... hope for a budget to allow them to receive services at home and in the community.. or support their children themselves becoming caretaker, teacher, nurse, behaviorist, cook and chauffeur. It is a life long committment.
It is not one that I shy away from but I am deeply in awe of all of the parents who do this every day like myself... it is overwhelming. Some days more than others.
I live in the moment, as does Andrew... and we applaud the families who are making strides and providing an enriched environment to their sons or daughters with autism.
Cheers
cate
Monday, December 8, 2014
The Year winds down - heartbreak and hope
I awoke this morning with a thought on my mind..it popped in unexpectedly and uninvited... autism is not a disability as much as it is a way of life.
I could never predict and I would have been wrong had I tried to predict where life would go... what Andrew would do or not do, accomplish or not accomplish ... where he would be at age 20... how we would care for him or survive the rigors of caring for a severely disabled individual.
There is a mercy in not knowing.. a mercy in being spared a view into the future... there is a grace in retrospect that knowing now what we know would we have done all we have done for him in the early years. Would we have short changed him? Not tried quite so hard... not struggled quite so much... not dreamed quite so big?
I believe life is meant to be lived in the present.. not what was..what could be or might be, but instead living firmly in the present of what is... I count seconds not hours and I count days not months.
Andrew's care is firmly rooted in day to day. Like many individuals with severe disabilities Andrew lives in the moment... his moods can fluctuate from giddily happy to morosely sad all in the blink of 5 minutes. I try not to soak up his moods, but instead to float above them, understanding they ebb and flow like the sea. No one has any answers or predictions. Just live for the day... have no expectations..be happy in the happy moments... and cautiously wait for the serious moments to move past. I revel in the smiles, rejoice in the laughter and securely hold the sad times at bay, hoping they will not return, but knowing they will.
Andrew has entered a new realm this year.. an unforeseen and heretofore, untrampled path that has now been carved in my memory. Seared in emotional pathways and secured like the tracks of a railroad... one episode after another ... feeling so long and drawn out, but really only moments in time.
And so it came to pass that this was the year that Andrew would develop a seizure disorder... not a mild seizure disorder, a slight lapse in consciousness or a tiny tremble of a hand or closing of the eyes, but instead a huge upheaval in the brain, an opening and closing of neurons and pathways... pathways that I picture snapping on and off like little firecrackers... only guessing what that might feel like in his brain... how uncomfortable that is.. how frightening... how engulfing of one's spirit. The inability to control one's limbs. The flashing of lights perhaps? a tingling? a pain? What does this feel like that takes a human's soul to this netherworld of unconsciousness.. flipping, and clenching and taking over the body for those moments of misery.
And so we lost a lot this year... lost our faith that all will go well... or at the very least progress... lost our resilience to a certain degree... and lost our ability to not have him in our sights at all times...without a pang of worry and fear that this monster of neurons would appear unexpectedly knocking him to the ground without our being aware.
We have weathered this storm for now... not secure that it has passed but simply feeling that the squalls will come and go and tides will ebb and flow whether we are on board or not.... we just ride this ship as unwilling passengers... but we follow it where it takes us.
After two emergency room visits we are beginning to piece some bits back together.. some little pieces of our existence returning with a small measure of confidence. We rely on the anti seizure drugs to do whatever it is they do... but we monitor them carefully, because at times these medications are more sinister than the seizures themselves and they are not our friends, but only our uncomfortable partners.
Andrew has returned to working in the shop... though less than he used to... we are happy to have him... and we love him dearly as always.. there is no diminution of parental love despite the hardships... life truly does march on.
I could never predict and I would have been wrong had I tried to predict where life would go... what Andrew would do or not do, accomplish or not accomplish ... where he would be at age 20... how we would care for him or survive the rigors of caring for a severely disabled individual.
There is a mercy in not knowing.. a mercy in being spared a view into the future... there is a grace in retrospect that knowing now what we know would we have done all we have done for him in the early years. Would we have short changed him? Not tried quite so hard... not struggled quite so much... not dreamed quite so big?
I believe life is meant to be lived in the present.. not what was..what could be or might be, but instead living firmly in the present of what is... I count seconds not hours and I count days not months.
Andrew's care is firmly rooted in day to day. Like many individuals with severe disabilities Andrew lives in the moment... his moods can fluctuate from giddily happy to morosely sad all in the blink of 5 minutes. I try not to soak up his moods, but instead to float above them, understanding they ebb and flow like the sea. No one has any answers or predictions. Just live for the day... have no expectations..be happy in the happy moments... and cautiously wait for the serious moments to move past. I revel in the smiles, rejoice in the laughter and securely hold the sad times at bay, hoping they will not return, but knowing they will.
Andrew has entered a new realm this year.. an unforeseen and heretofore, untrampled path that has now been carved in my memory. Seared in emotional pathways and secured like the tracks of a railroad... one episode after another ... feeling so long and drawn out, but really only moments in time.
And so it came to pass that this was the year that Andrew would develop a seizure disorder... not a mild seizure disorder, a slight lapse in consciousness or a tiny tremble of a hand or closing of the eyes, but instead a huge upheaval in the brain, an opening and closing of neurons and pathways... pathways that I picture snapping on and off like little firecrackers... only guessing what that might feel like in his brain... how uncomfortable that is.. how frightening... how engulfing of one's spirit. The inability to control one's limbs. The flashing of lights perhaps? a tingling? a pain? What does this feel like that takes a human's soul to this netherworld of unconsciousness.. flipping, and clenching and taking over the body for those moments of misery.
And so we lost a lot this year... lost our faith that all will go well... or at the very least progress... lost our resilience to a certain degree... and lost our ability to not have him in our sights at all times...without a pang of worry and fear that this monster of neurons would appear unexpectedly knocking him to the ground without our being aware.
We have weathered this storm for now... not secure that it has passed but simply feeling that the squalls will come and go and tides will ebb and flow whether we are on board or not.... we just ride this ship as unwilling passengers... but we follow it where it takes us.
After two emergency room visits we are beginning to piece some bits back together.. some little pieces of our existence returning with a small measure of confidence. We rely on the anti seizure drugs to do whatever it is they do... but we monitor them carefully, because at times these medications are more sinister than the seizures themselves and they are not our friends, but only our uncomfortable partners.
Andrew has returned to working in the shop... though less than he used to... we are happy to have him... and we love him dearly as always.. there is no diminution of parental love despite the hardships... life truly does march on.
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| Cutting wooden skewers for our paper trees - getting back into life. |
Thursday, September 25, 2014
Does the disability define you?
For the last week or two I have struggled with my own mind, and in my own way tried to find peace with decisions that I make or do not make regarding my son's needs... I have no mentor...no guide..no guru... I have only ME.
Does the disability, in our case, autism/neurological disorder, define me or us as a family? I asked myself that question, and was faced with a very stark reality, and an honest appraisal of my own naked truth.
The answer came to me some time on Tuesday of this week when I was totally alone with my thoughts. I gave this question my full undivided attention, which is something I don't usually do as I am generally multi tasking and overwhelmed with multiple thoughts.
The answer... the honest answer was YES it does define me. Yes it does. I admit that to myself. I have created a sphere or a parallel universe that I glide in and out of that for certain defines me, directs me, motivates me, discourages me, depresses me, elates me and passionately influences me every single day in one way or the other.
I can never look at clouds the same way... I can never know truly what a quiet house sounds like, for as long as Andrew lives with me, it is never quiet. I can not know what it feels like to simply grab a jacket and go... that easy slipping through the door feeling with one's keys in one's hands ready to race away... I cannot race away... there is no "away." I carry autism with me every single minute of every single day. It IS a part of who I am.
I have come to the realization that I have isolated myself these last few years for a reason, it was not accidental, it was not happenstance... it was an intentional guarding of my soul, to prevent real life from crowding in and asking questions: Are you happy? How do you do this? Don't you want a life? You cannot do this forever? Isn't this too much for you? I could never do this.. I don't know you do this every day. Can't you put him somewhere? The last question is my personal favorite.
Can't I put him somewhere - there is never a hint of where that somewhere is... who lives in that somewhere... who provides the care, love and support that I do... just a vague reference to "somewhere."
I found myself alternately alienated from people, repulsed or just depressed by their commentary. My comment to someone this week when discussing Andrew's very difficult set of circumstances and care needs that "Love is messy.. and love should be unconditional... do I say I only love you when it's easy? Or do I really love you all the time even when it is very hard...
I had to ask these questions of myself many times and still do. Could I put him "somewhere" sure wherever that somewhere is I am sure he is entitled to a free pass to gain entry. He is very disabled and worthy of a spot "somewhere" but then I ask myself who will sing Happy Birthday and mean it.. Who will look at his face if it is flushed and take the time to figure out if he is sick or has a fever. Who will watch his excitement when he rips his and everyone elses Christmas presents open? WHO lives in this somewhere with my son... ? I simply don't know and for right now I do not want to know.
I made a committment to him and more importantly to myself.. my own ethics, following my own moral compass for what is right what is wrong, and though I know that somewhere IS in his future as I have not determined how to live forever... It will be in MY time, MY way and MY choosing... not prematurely or rashly determined by the whim and pressure from society that coddles the "normal."
I know I don't control life and things could change that would force my hand... but for now autism does define me - it has left its mark - it has made me live in the present more than most people do... be present fully in each and every good moment and not take anything for granted.
I watch him suffer and also watch his joy... he loves clouds and so do I. I am compelled to direct my eyes skyward and look with the same wonder that he does... he has taught me that.. live in the moment and revel in the most simplest times of joy.
Take time for joy...
cate..
Does the disability, in our case, autism/neurological disorder, define me or us as a family? I asked myself that question, and was faced with a very stark reality, and an honest appraisal of my own naked truth.
The answer came to me some time on Tuesday of this week when I was totally alone with my thoughts. I gave this question my full undivided attention, which is something I don't usually do as I am generally multi tasking and overwhelmed with multiple thoughts.
The answer... the honest answer was YES it does define me. Yes it does. I admit that to myself. I have created a sphere or a parallel universe that I glide in and out of that for certain defines me, directs me, motivates me, discourages me, depresses me, elates me and passionately influences me every single day in one way or the other.
I can never look at clouds the same way... I can never know truly what a quiet house sounds like, for as long as Andrew lives with me, it is never quiet. I can not know what it feels like to simply grab a jacket and go... that easy slipping through the door feeling with one's keys in one's hands ready to race away... I cannot race away... there is no "away." I carry autism with me every single minute of every single day. It IS a part of who I am.
I have come to the realization that I have isolated myself these last few years for a reason, it was not accidental, it was not happenstance... it was an intentional guarding of my soul, to prevent real life from crowding in and asking questions: Are you happy? How do you do this? Don't you want a life? You cannot do this forever? Isn't this too much for you? I could never do this.. I don't know you do this every day. Can't you put him somewhere? The last question is my personal favorite.
Can't I put him somewhere - there is never a hint of where that somewhere is... who lives in that somewhere... who provides the care, love and support that I do... just a vague reference to "somewhere."
I found myself alternately alienated from people, repulsed or just depressed by their commentary. My comment to someone this week when discussing Andrew's very difficult set of circumstances and care needs that "Love is messy.. and love should be unconditional... do I say I only love you when it's easy? Or do I really love you all the time even when it is very hard...
I had to ask these questions of myself many times and still do. Could I put him "somewhere" sure wherever that somewhere is I am sure he is entitled to a free pass to gain entry. He is very disabled and worthy of a spot "somewhere" but then I ask myself who will sing Happy Birthday and mean it.. Who will look at his face if it is flushed and take the time to figure out if he is sick or has a fever. Who will watch his excitement when he rips his and everyone elses Christmas presents open? WHO lives in this somewhere with my son... ? I simply don't know and for right now I do not want to know.
I made a committment to him and more importantly to myself.. my own ethics, following my own moral compass for what is right what is wrong, and though I know that somewhere IS in his future as I have not determined how to live forever... It will be in MY time, MY way and MY choosing... not prematurely or rashly determined by the whim and pressure from society that coddles the "normal."
I know I don't control life and things could change that would force my hand... but for now autism does define me - it has left its mark - it has made me live in the present more than most people do... be present fully in each and every good moment and not take anything for granted.
I watch him suffer and also watch his joy... he loves clouds and so do I. I am compelled to direct my eyes skyward and look with the same wonder that he does... he has taught me that.. live in the moment and revel in the most simplest times of joy.
Take time for joy...
cate..
Saturday, August 30, 2014
Giving in does not mean giving up - letting go - rethinking - the world of rethinking the difficult and imagining the possible
I write"and think quite a lot about living with an individual with a disability. "With" perhaps is not the key word in this case... perhaps living "around" around an individual with a disability would be more suitable.
"With" reflects a "cooperative or mutually agreeable cohabitation" whereas living "around" means perhaps we revolve around each other often times not in the same spheres of communication, personal space features or ideas.
Living around I think captures the idea of the journey, the difficulties and the adjustments.
For instance, I like to drink my tea out of hand thrown mugs or pottery, a Starbucks ceramic also satisfies my urges to put my liquid in a suitable container.
In the world of our particular disability, autism, ceramic cups, mugs or other reasonably accommodating containers are not allowed and must be strictly prohibited. How do I know this whilst living with an individual who is nonverbal? Ahhh well it appears that each time a mug or ceramic drinking vessel came into his line of vision, it was necessary to secure its demise by dropping it effortlessly on the travertine stone floor. It smashed ceremoniously and with great flair sending chunks and pieces everywhere - a handle under the couch, a lip under the table and various minute shards elsewhere to be vacuumed and swept up. Was it the look of the implosion - was it the sound or both? It must have created a sensation that in his world is missing and this activity satisfies that need.
On occasion, if possible, I will swoop in to catch the item mid air and quickly remove it from sight. Those occasions, however, are rare.
There is no malice in the action - to this day I don't understand this need to break ceramics - it also includes pottery for plants and certain specific types of ceramics (Corningware seems to be excluded), it has to be the real deal for the most part - hand thrown, crafted with care - and cherished.. those are always the first to go.
I have a box in the barn of shards of various pottery that will make a lovely mosaic table top some day.
Pieces and slivers of pottery decorate my garden as a living tribute to the mass exodus and demise of my favorite pieces. The Starbucks- made in China mug- must have slipped through the cracks of the "breakage manual" as it is neither hand made, nor one of a kind, nor cherished.... liked, but not cherished.
And so, I now drink out of a variety of cups that have absolutely no meaning, no soul, and are esthetically unpleasing and of course unbreakable, a mish mosh of metal travel mugs and ugly plastic containers.
How do we make peace in this war of differences? I am still working on it as I rebel every single time I drink from a plastic mug. We have plastic cups as well for cold drinks which also send shivers down my spine...
I have many mini battles with this type of living condition and have yet to win this war, but I make adjustments daily and attempt to stay ahead of the "autism handbook" that requires destruction of those things that I hold dear.
My clothing can have no labels, not shirts, jackets, jeans, purses, totes. This ban on labels also extends to shower curtains, appliances and even furnaces. Anything that has the nerve to don a label must be adjusted and that label must be ripped without hesitation from the offending item. This label ban also extends to those little tiny labels that computers like to sport that tell you what type of processor gizmos are on board your new laptop.. yes those go as well. Serial numbers on refrigerators are noticeably absent and cause a bit of concern when you are trying to arrange for a repair or part as you have no idea what serial number or model number was originally part of this appliance.
I have made up many excuses as I see quizzical looks from appliance repair persons. Why do these people have no identification numbers on their large appliances, who rips those labels off a nut case? A clean freak ? I scrubbed them off by accident is my usual reply. Easier and quicker to lie in this case.
Hoods have also come under fire, any hood, every hood. "Hoodies" not a viable word in this household. There are no hoodies or hoods on anything... In fact all sweatshirts have been remodeled to include a hoodless version, frayed and tattered at the neck seam giving them a shabby chic distressed look. One sweatshirt only lasted about 2 hours after arriving as a Holiday gift.
I believe my VIN\ number from my car would also be missing if I did not lock my doors. I found it oddly humorous that on an occasion of an outing while passing the back of my car, he ripped off an "autism awareness" sticker. Perhaps he felt we were all aware enough? It was shredded without remorse and left in a pile by the back tire.. So much for awareness.
And so it goes day by day - living around Andrew is to change one's life in small and big ways - drinking from a plastic cup is my accommodation - hiding my clothes and putting locks on closets is a way to cope.
I am not giving up or necessarily giving in - I am succeeding and trying to outwit the autism handbook. I am not sure what chapter is next, but I know there will be a new chapter as shredding beach towels arrived just last week. ONLY beach towels. The handbook must be very specific.
With tongue in cheek I had the audacity to add ONE hand thrown mug to my collection again hoping he will not notice, so far it is still surviving, but I carefully carry it everywhere as to leave it alone in the kitchen is to predict it's shattered demise.
Accommodate when you can - rejoice - find joy in the little things - and always try to remember that life is about challenges and changes...
Peace,
cate
"With" reflects a "cooperative or mutually agreeable cohabitation" whereas living "around" means perhaps we revolve around each other often times not in the same spheres of communication, personal space features or ideas.
Living around I think captures the idea of the journey, the difficulties and the adjustments.
For instance, I like to drink my tea out of hand thrown mugs or pottery, a Starbucks ceramic also satisfies my urges to put my liquid in a suitable container.
In the world of our particular disability, autism, ceramic cups, mugs or other reasonably accommodating containers are not allowed and must be strictly prohibited. How do I know this whilst living with an individual who is nonverbal? Ahhh well it appears that each time a mug or ceramic drinking vessel came into his line of vision, it was necessary to secure its demise by dropping it effortlessly on the travertine stone floor. It smashed ceremoniously and with great flair sending chunks and pieces everywhere - a handle under the couch, a lip under the table and various minute shards elsewhere to be vacuumed and swept up. Was it the look of the implosion - was it the sound or both? It must have created a sensation that in his world is missing and this activity satisfies that need.
On occasion, if possible, I will swoop in to catch the item mid air and quickly remove it from sight. Those occasions, however, are rare.
There is no malice in the action - to this day I don't understand this need to break ceramics - it also includes pottery for plants and certain specific types of ceramics (Corningware seems to be excluded), it has to be the real deal for the most part - hand thrown, crafted with care - and cherished.. those are always the first to go.
I have a box in the barn of shards of various pottery that will make a lovely mosaic table top some day.
Pieces and slivers of pottery decorate my garden as a living tribute to the mass exodus and demise of my favorite pieces. The Starbucks- made in China mug- must have slipped through the cracks of the "breakage manual" as it is neither hand made, nor one of a kind, nor cherished.... liked, but not cherished.
And so, I now drink out of a variety of cups that have absolutely no meaning, no soul, and are esthetically unpleasing and of course unbreakable, a mish mosh of metal travel mugs and ugly plastic containers.
How do we make peace in this war of differences? I am still working on it as I rebel every single time I drink from a plastic mug. We have plastic cups as well for cold drinks which also send shivers down my spine...
I have many mini battles with this type of living condition and have yet to win this war, but I make adjustments daily and attempt to stay ahead of the "autism handbook" that requires destruction of those things that I hold dear.
My clothing can have no labels, not shirts, jackets, jeans, purses, totes. This ban on labels also extends to shower curtains, appliances and even furnaces. Anything that has the nerve to don a label must be adjusted and that label must be ripped without hesitation from the offending item. This label ban also extends to those little tiny labels that computers like to sport that tell you what type of processor gizmos are on board your new laptop.. yes those go as well. Serial numbers on refrigerators are noticeably absent and cause a bit of concern when you are trying to arrange for a repair or part as you have no idea what serial number or model number was originally part of this appliance.
I have made up many excuses as I see quizzical looks from appliance repair persons. Why do these people have no identification numbers on their large appliances, who rips those labels off a nut case? A clean freak ? I scrubbed them off by accident is my usual reply. Easier and quicker to lie in this case.
Hoods have also come under fire, any hood, every hood. "Hoodies" not a viable word in this household. There are no hoodies or hoods on anything... In fact all sweatshirts have been remodeled to include a hoodless version, frayed and tattered at the neck seam giving them a shabby chic distressed look. One sweatshirt only lasted about 2 hours after arriving as a Holiday gift.
I believe my VIN\ number from my car would also be missing if I did not lock my doors. I found it oddly humorous that on an occasion of an outing while passing the back of my car, he ripped off an "autism awareness" sticker. Perhaps he felt we were all aware enough? It was shredded without remorse and left in a pile by the back tire.. So much for awareness.
And so it goes day by day - living around Andrew is to change one's life in small and big ways - drinking from a plastic cup is my accommodation - hiding my clothes and putting locks on closets is a way to cope.
I am not giving up or necessarily giving in - I am succeeding and trying to outwit the autism handbook. I am not sure what chapter is next, but I know there will be a new chapter as shredding beach towels arrived just last week. ONLY beach towels. The handbook must be very specific.
With tongue in cheek I had the audacity to add ONE hand thrown mug to my collection again hoping he will not notice, so far it is still surviving, but I carefully carry it everywhere as to leave it alone in the kitchen is to predict it's shattered demise.
Accommodate when you can - rejoice - find joy in the little things - and always try to remember that life is about challenges and changes...
Peace,
cate
Thursday, August 28, 2014
Resilience - Autism - Following your own energy
My mantra for this time in our collective lives is TRUST yourself - Follow your own innate energy.
If I had a dime for the amount of advice I have been given by "well respected, knowledgeable experts" in the field of autism, I would be writing to you from a beach in Fiji or perhaps not, perhaps a beach on the Maine coast since I am more bent to lean in that direction.
But nevertheless I am sure I would not be here...
We have been dealing with autism for 17 years... diagnosed at age 3 and now age 20... no one gave us a road map and perhaps it is good that they did not since the road has been bumpy, tumultuous, paved oftentimes with tears, gnashing of teeth, frustration, sorrow, and joy.
There is no way to predict where or how your particular son or daughter will fare. I did all the "right things" intensive early intervention hours and hours of it, but the reality of that was and is that for some individuals the neurological damage is too hard wired... too intensely convoluted for any therapy to alleviate all or even most of the symptoms. You can hope for remediation of some... but we have found when we push a few down, a few more surface.. never ending. .. My friend calls it the whack a mole syndrome...
The child you have at 5 is a far cry from the individual you see at 15, 18 or 20.
We engaged in ABA and all of the bells and whistles that that entails, discrete trial, antecedent tracking, behavioral tracking, 10 second interval data, this data that data - none of it in the end meant a hill of beans, mainly because those tasked with "collecting" these reams of useless papers never put the data to any good use. Many of our fire pit bonfires have been ignited with useless "data" and IEP notices.
We collected and collected and collected but no conclusions were ever arrived at. No strategies ever offered and no interventions tried to reduce reduce those behaviors they were collecting data on in the first place. More data followed more data. I was buried in data. I was told often "we don't have enough data points." When he began to punch himself in the head from frustration I was told the "data points did not indicate he had enough head hits to warrant an intervention." As a parent I asked myself isn't one head hit too many ? Isn't anyone going to push a panic button, hold a meeting, yell FIRE - we need to act?
Surprisingly no one did--- it was as if it is and was expected - you know kids with autism do all sorts of weird stuff - so we will just observe and oh ...yes... collect more data. When the "data points" hit a certain mark and/or he loses consciousness (which ever comes first) we will have a meeting to talk about the data. I say this tongue in cheek, but in reality that is basically what happened.
To that end, this year at age 20 I have decided to take interventions into my own hands... follow my own heart, my own internal ticking that tells me what to do or not do.. I am not always right, but sadly and wickedly my interventions based on observation, instinct and love have proven in many cases to be spot on.
If I had one word for parents battling this battle, follow your heart.. your gut and your instinct.. Buck the data collectors and save your child... do not let the data collection go on and on while your child needlessly suffers... stand up, speak up and change your world...
cate for Andrew
If I had a dime for the amount of advice I have been given by "well respected, knowledgeable experts" in the field of autism, I would be writing to you from a beach in Fiji or perhaps not, perhaps a beach on the Maine coast since I am more bent to lean in that direction.
But nevertheless I am sure I would not be here...
We have been dealing with autism for 17 years... diagnosed at age 3 and now age 20... no one gave us a road map and perhaps it is good that they did not since the road has been bumpy, tumultuous, paved oftentimes with tears, gnashing of teeth, frustration, sorrow, and joy.
There is no way to predict where or how your particular son or daughter will fare. I did all the "right things" intensive early intervention hours and hours of it, but the reality of that was and is that for some individuals the neurological damage is too hard wired... too intensely convoluted for any therapy to alleviate all or even most of the symptoms. You can hope for remediation of some... but we have found when we push a few down, a few more surface.. never ending. .. My friend calls it the whack a mole syndrome...
The child you have at 5 is a far cry from the individual you see at 15, 18 or 20.
We engaged in ABA and all of the bells and whistles that that entails, discrete trial, antecedent tracking, behavioral tracking, 10 second interval data, this data that data - none of it in the end meant a hill of beans, mainly because those tasked with "collecting" these reams of useless papers never put the data to any good use. Many of our fire pit bonfires have been ignited with useless "data" and IEP notices.
We collected and collected and collected but no conclusions were ever arrived at. No strategies ever offered and no interventions tried to reduce reduce those behaviors they were collecting data on in the first place. More data followed more data. I was buried in data. I was told often "we don't have enough data points." When he began to punch himself in the head from frustration I was told the "data points did not indicate he had enough head hits to warrant an intervention." As a parent I asked myself isn't one head hit too many ? Isn't anyone going to push a panic button, hold a meeting, yell FIRE - we need to act?
Surprisingly no one did--- it was as if it is and was expected - you know kids with autism do all sorts of weird stuff - so we will just observe and oh ...yes... collect more data. When the "data points" hit a certain mark and/or he loses consciousness (which ever comes first) we will have a meeting to talk about the data. I say this tongue in cheek, but in reality that is basically what happened.
To that end, this year at age 20 I have decided to take interventions into my own hands... follow my own heart, my own internal ticking that tells me what to do or not do.. I am not always right, but sadly and wickedly my interventions based on observation, instinct and love have proven in many cases to be spot on.
If I had one word for parents battling this battle, follow your heart.. your gut and your instinct.. Buck the data collectors and save your child... do not let the data collection go on and on while your child needlessly suffers... stand up, speak up and change your world...
cate for Andrew
Wednesday, July 9, 2014
And so it goes - autism plus or autism unchained
For most parents living with kids on the spectrum, especially on the severe end of the spectrum, we hear about the "epilepsy" connection - the high incidence of seizures - hoping to dodge that bullet.. I thought we had. Andrew was past the early teens finger crossed one less thing to worry about.
But it was not meant to be. He had two seizures in the course of a month. Big huge seizures that take my breath away and take me back to a new level of anxiety. His poor brain, so besieged as it is neurologically speaking, now has to undergo this assault. On top of that the seizure caused a fall which caused a concussion and laceration. He was out of it for days after and required a visit to the E.R.
But, thankfully he is back now - doing some work again for Papercatz and resuming his role as my most loved assistant. He is tough, difficult by anyones' standards, but I love him and so life goes on.
Grace in retrospect that we had many years without seizures, and prayers for the future to be seizure free some day.
Will have to post some new pictures of andrew working. This week he worked on new cotton muslin tags. Very sweet and special for summer. Andrew shredded all of the cotton used to make the tags.
cate :)
But it was not meant to be. He had two seizures in the course of a month. Big huge seizures that take my breath away and take me back to a new level of anxiety. His poor brain, so besieged as it is neurologically speaking, now has to undergo this assault. On top of that the seizure caused a fall which caused a concussion and laceration. He was out of it for days after and required a visit to the E.R.
But, thankfully he is back now - doing some work again for Papercatz and resuming his role as my most loved assistant. He is tough, difficult by anyones' standards, but I love him and so life goes on.
Grace in retrospect that we had many years without seizures, and prayers for the future to be seizure free some day.
Will have to post some new pictures of andrew working. This week he worked on new cotton muslin tags. Very sweet and special for summer. Andrew shredded all of the cotton used to make the tags.
cate :)
Saturday, July 5, 2014
HIGH SUMMER - CHICKENS RULE
High summer as opposed to low summer which in my tradition hits in August - the dog days of summer - hot and muggy. High summer are those blue sky days where there is less humidity and more ability to breathe. Those GTBA days (Good to be alive days)... I look at the crystal azure skies and I am happy to breathe in the cooler air. Today is one of those days, and the sky is putting on its show of crystal blue that I cannot stop looking upward to admire...
Today the chickens got a treat that to them is the caviar of treats BUTTERNUT SQUASH.
This mini flock are Belgian D'uccles - bantam chickens small in size, but big in personality.
They adore butternut squash - cooked of course.
Today the chickens got a treat that to them is the caviar of treats BUTTERNUT SQUASH.
This mini flock are Belgian D'uccles - bantam chickens small in size, but big in personality.
They adore butternut squash - cooked of course.
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| Shrimp with cucumber - Yum |
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| Fouth of July celebration cupcakes and the old Red, White and Blue |
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| Braveheart on the right coming up for air with a beak full of butternut. Blondie on the left is a little wary. |
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| Tessa second from left never came up for air and ate till it was all gone. |
Friday, June 20, 2014
Show time
I don't do a lot of shows, but the ones I do I like. Good to meet the people behind the keyboard and to see new clients and enjoy meeting up with people I have met before.
I spent the last week painting pots and potting plants, making banners and paper flowers. Mason Jars are a popular theme right now and I find them simple, yet timeless.
I have painted, painted again, sealed and prepped more Mason Jars then I care to recall. Included in this prep work are ribbons and sanding... so it is nice to see it all come together.
I spent the last week painting pots and potting plants, making banners and paper flowers. Mason Jars are a popular theme right now and I find them simple, yet timeless.
I have painted, painted again, sealed and prepped more Mason Jars then I care to recall. Included in this prep work are ribbons and sanding... so it is nice to see it all come together.
Creating new beginnings
I am always concerned and interested in creating new products. Never satisfied to sit contentedly with what "is" I am always looking for "what's next" or what "will be."
Creating a line of products that are customer friendly and earth friendly are in my thoughts frequently, while constantly striving to keep my young helpers interested and motivated,.
Our shop was born from the need to create employment for our son, Andrew, who at age 3 was diagnosed with autism. Autism has become a far too common household word and almost everyone can name someone they know with autism, either family or friends.
Unfortunately, Andrew was diagnosed with classic autism, nonverbal, struggling and at times difficult. We make each day a new day and try not to "keep score" of the failures or false starts, but instead focus on new beginnings and new hopes and dreams.
He has had a difficult time this past month suffering a seizure for the first time. It is a little known fact that individuals with more severe autism frequently suffer seizures either as young children or as they emerge into adulthood. It is a scary, complex and unwanted part of what is already a complex situation.
And so we move forward slowly, carefully and with hope that his seizure disorder will be mild and can be controlled and managed. He has been slowly returning to his job at Papercatz and will be busy today helping me get ready for a show on Saturday.
Recently while working in the garden, I looked down to see a little heart shaped leaf had stuck itself to my foot. I took it as a sign of good faith and love from mother nature as I treasure my time outdoors.
...
Creating a line of products that are customer friendly and earth friendly are in my thoughts frequently, while constantly striving to keep my young helpers interested and motivated,.
Our shop was born from the need to create employment for our son, Andrew, who at age 3 was diagnosed with autism. Autism has become a far too common household word and almost everyone can name someone they know with autism, either family or friends.
Unfortunately, Andrew was diagnosed with classic autism, nonverbal, struggling and at times difficult. We make each day a new day and try not to "keep score" of the failures or false starts, but instead focus on new beginnings and new hopes and dreams.
He has had a difficult time this past month suffering a seizure for the first time. It is a little known fact that individuals with more severe autism frequently suffer seizures either as young children or as they emerge into adulthood. It is a scary, complex and unwanted part of what is already a complex situation.
And so we move forward slowly, carefully and with hope that his seizure disorder will be mild and can be controlled and managed. He has been slowly returning to his job at Papercatz and will be busy today helping me get ready for a show on Saturday.
Recently while working in the garden, I looked down to see a little heart shaped leaf had stuck itself to my foot. I took it as a sign of good faith and love from mother nature as I treasure my time outdoors.
...
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| A bit of love from Mother Nature. |
Sunday, June 8, 2014
The chickens are coming
Well in the past few weeks I wrangled a new chicken coop for some new birds that have joined the menagerie.
Bearded, booted Belgian D'uccles - long name for bantam (small sized) chickens with lots of feathers on the their feet and also little feathers that stick out like beards around their face.
They were released today for the first time and seem to be loving being all that chickens can be..
Many people tell me they don't like chickens and I can never figure out why. They are harmless, comical, social and easy keepers. Food, water, shelter and they are content.
There are four - supposedly hens - 2 are roosters - they were "mock fighting" today hope they don't take it to the next level. Chest bumping each other in a very energetic dance.
The other two are hens very timid and pleasant. Friendly and docile - this breed is a lovely pet. They lay small beige eggs. Three eggs make a nice scrambled egg omelet.
A rooster making his way down backwards... now who is doing it better? hmmm
Bearded, booted Belgian D'uccles - long name for bantam (small sized) chickens with lots of feathers on the their feet and also little feathers that stick out like beards around their face.
They were released today for the first time and seem to be loving being all that chickens can be..
Many people tell me they don't like chickens and I can never figure out why. They are harmless, comical, social and easy keepers. Food, water, shelter and they are content.
There are four - supposedly hens - 2 are roosters - they were "mock fighting" today hope they don't take it to the next level. Chest bumping each other in a very energetic dance.
The other two are hens very timid and pleasant. Friendly and docile - this breed is a lovely pet. They lay small beige eggs. Three eggs make a nice scrambled egg omelet.
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| A brave hen taking a tentative first step. |
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Monday, May 19, 2014
Kokedama fever - Japanese string plants - or plants without pots
Kokedama is not an illness nor a real fever but the art of arranging by Japanese standards simple lines of plants inside a natural moss wrap. A plant within a plant if you will.
The plant is selected and placed carefully in its own premade dirt/clay ball - surrounded with live moss - wrapped with simple twine and either suspended on a string (i.e. string plants) and/or placed on a pedestal or shallow platter.
Live moss surrounds the plant and your little fledgling is nestled carefully inside. It is quite interesting. I love all things nature based so it was natural when I saw these little beauties that I had to try to duplicate.
Today is Kokedama day #1 - I will monitor to see how my little plants do in this new environment and mixture and success or failure will be carefully measured over the next two weeks. Fingers are crossed.
If they maintain their health - they will become a staple of Papercatz products and be on display at local craft fairs and markets - I don't think shipping would be in their best interest.
The plant is selected and placed carefully in its own premade dirt/clay ball - surrounded with live moss - wrapped with simple twine and either suspended on a string (i.e. string plants) and/or placed on a pedestal or shallow platter.
Live moss surrounds the plant and your little fledgling is nestled carefully inside. It is quite interesting. I love all things nature based so it was natural when I saw these little beauties that I had to try to duplicate.
Today is Kokedama day #1 - I will monitor to see how my little plants do in this new environment and mixture and success or failure will be carefully measured over the next two weeks. Fingers are crossed.
If they maintain their health - they will become a staple of Papercatz products and be on display at local craft fairs and markets - I don't think shipping would be in their best interest.
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| How rustic and natural this would look on a sunroom table or shaded patio. |
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| I could also see this as petite party favors or part of a rustic table setting. |
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