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

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!!!

New Italian crepe paper party favors

Rustic hand cut birch slices

Some new color combinations for our Mason jar flowers

A colorful Mason Jar Pastel collection.

New Products coming soon! 

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

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. 

Cutting wooden skewers for our paper trees - getting back into life.

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..

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

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