The Year of Lucky: Month 2

 

Always wanted one of my kids to go to the Ivy League school and this is the girl that made it happen.  I have the good fortune of having one of the very best veterinarian practices and research schools in my back yard at Cornell so after a distressing start to the new year, literally on new years eve and day, with Lucky falling sick we found ourselves referred to them for her precise diagnosis and treatment . 

 

 Dearest Lucky has completed 4 rounds of an immunilogic DNA response vaccine for treatment of one of her cancers, the mesenchymal neoplasm melanoma located in her mouth while monitoring the area where she had a adenocarcinoma removed from her tail. There were options of amputation of her tail and removal of her jaw (in order to obtain the optimal clean margins), but after so many other surgeries and treatments we have decided these very invasive courses of action would not be the best choice to having her live her best remaining life. 

 

While not a simple task, I could only wish that I was as capable of creating a plan for ZMan as I am for this sweet pup. Lines are far more more gray, and options have so many implications for his future, that I am often left stifled in how to proceed for him. I was hoping that going off task for a bit and dealing with with our dear pups situation would help bring me some clarity of how to proceed with Zach. Indeed I am still as unsure as ever, and taking each day and its circumstances as they come.

 

But for now, Lucky is still able to take walks, bark at neighbors, receive loving touches from friends we meet on our way through day to day life, and bring light to our lives. 

 

International Dog Day and The Year of Lucky

Taking this opportunity of August 26, 2023, International Dog Day, to take a breath from the intensive cortisol producing life of ours to blog about our girl, Lucky.  Lucky came to us 12 years ago from the now defunct organization Golden Retriever Rescue of Central New York. 

What's in a name?   

I remember when Sophia named her, I groaned internally for the sweet girl who came to us as "Ella", after making the offer for her to name her since the formerly known as "Ella" arrived just one day shy of Sophia's 7th birthday.  Despite naming privileges, the intent was to have Lucky be the more affordable alternative to a service dog for ZMan.  This came after reading book after book about golden retrievers with kids with disabilities.

12 years later, and with death, departures, and other various tribulations, she has been my true constant, and now is in a predicament of her own.  Lucky has been diagnosed not just with one, but TWO types of cancer.

While there are many important responsibilities and matters that I need to attend to (one seemingly as dire as the next), I have decided in lieu of professional therapy (that I can neither afford, nor physically attend, nor make the time commitment to) to write as often as I can muster about my dear girl and create what I hope is "The Year of Lucky": a year dedicated to honoring the fur girl who is by all intents and purposes both the sweetest and the most anxious pup that I have ever aspired to be like.

 

Into The Woods

If you had asked me back when this photo was taken how truly prophetic and symbolic it would be to me, I would have said it's just a tired suburban Mom who loves the outdoors and hiking, sharing that with her two very young children.

But then there is more to it than that. Sophia's eyes are approximately tracking to my point with her penguin emblazoned zoo member t-shirt and her soon to be trademarked cap on her head, the actual head covering would vary through the years from baseball caps, a Pokemon knit hat, a few different canvas bucket hats, and one always memorable frog bucket hat that she wore in a rather upscale bistro while on a college visit in Savannah Georgia, to her current knit beanie. ZMan is perched on my back, reliant on me, a sort of point force, for his direction and movement, as we have stepped off the trail for a moment to take in the view of something.  Yes, something.  I have absolutely no memory of what I was trying to point out to my children in this picture.  A bird?  A fallen tree?  Something I found notable enough to stop to step of the trail a few steps and take a moment to point out before continuing.

This was a picture taken BA - Before Autism.  Now, of course, autism existed in the world long before this afternoon outing in the woods, I had even experienced it firsthand as a teenager in a summer project.  But this was before I had any idea what was to come , how it would personally impact everyone in this picture. This photo was taken while I was a woman with a career, a graduate degree, a family, a husband, my beautiful children, a home, friends, a new minivan, organic produce in the fridge and a hand me down Keurig.  Yep- the whole kit and kaboodle.  I was making the right decisions and the right things were happening.  I had God and so many others by my side, and it showed.

I never envisioned myself a fast food worker, family having receded, a single parent, with more virtual relations than in person ones, relying on a system,  a 10 year old (albeit fantastic and beloved) Toyota minivan approaching 200,000 miles, who strives to have fresh produce as often as possible in a fridge that uses a bicycle lock to contain the items in it for when needed as opposed to targets of OCD behaviors, and a French press that may or may not have been used as a drinking vessel as opposed to a pouring vessel, as designed, with two children with variant forms of neurology from the "norm" and my own variant and disability being discovered in the process of trying to forge a path for them.

 I have definitely stepped off the trail.  It has been harrowing.  It will be harrowing.  It might even be harrowing right now. And through the strain, anxiety and tension of any of these moments, I am attempting to guide those two beautiful human beings, just as I always have, back on the trail with its many twists and turns, but without losing sight of the fact that some of the most beautiful things that exist in this world of ours are often only experienced when not expected, when not intended, when you simply come upon them, and off the beaten path.

My Lovely Crocodile; Ms Alicia and the ZMan on the Quest for a Serene Dental Visit

 

                 The crocodile, with cunning smile, sat in the dentist’s chair.

                 He said, “Right here and everywhere my teeth require repair.”

                The dentist’s face was turning white. He quivered, quaked and shook.

                He muttered, “I suppose I’m going to have to take a look.”

                                                                                   - By Roald Dahl

 

So a behavior therapist, a behavior analyst, and an autistic kid walk into a dentist office ...

Sounds like a good lead up to a pretty funny joke.  And one day I might actually get around to writing the punch line for it.  But for now I will keep you in suspense.

Today was Day One of the Quest for a Serene Dental Visit starring ours truly the one and only ZMan and the Exquisite and Noble Ms Alicia, dental hygienist by day, and autism versed Mom and sister, and just all around good gal by night.

When I first became aware of the Exquisite and Noble Ms. Alicia, I saw an extra spark that you see every once in awhile from one of the many all around amazing moms with kids with autism. She is someone who has a passion for trying to sprinkle their magic pixie dust to help create much needed resources and programming for this under-served population.  When I found out she was a dental hygienistm I became star-struck (in this world, the range of people who exhilarate me are no longer the celebrities, the uber-commerically-succesful, the head-turners but rather anyone with an ability and/or willingness to make things possible for people like my Beautiful Boy); could there every be a chance that she could one day help with our saga of attempting to get Zach's anxiety managed for a dental visit that didn't involve hives, sweat and tears (some his, some mine, some both) and lest us not forget the "papoose" (a softer, gentler termfor a type of restraint used by various health practitioners that work with the population who struggle with challenging behaviors at such visits).

Well, indeed the Exquisite and Noble Ms. Alicia did just that, she on her own came up with the idea for a program, proposed it to her receptive boss, the all together good gal herself Dr. Stephanie Cavallaro, and a program was born, and ZMan's momma got on the horn immediately and said "yes please" fervently trying to contain the nervous excitement of the prospect of getting BoyWonder out of that dang "papoose".  The program caught the ear of a local TV station who aired this segment on Spectrum News

Now today was Day One, and after a consultation with the Board Certified Behavior Analyst who runs Zach's programming, we collectively decided to target the following goal as an iteration towards the ultimate goal of a getting his teeth cleaned and checked without sweat, without tears, without hives, and most of all without that blasted "papoose": 2 minutes sitting in the dental chair.  

So first off, SirRefusesALot readily exited the vehicle and walked right into the dental office (seen only through a social story up until that point made by the Exquisite and Noble Ms. Alicia).  On the way into his exam room he definitely ceased the opportunity to make sure that container of pens made sure to lose altitude by approximately 3 feet; nothing like a little dumping behavior to lighten the mood... and looked around the room for whatever other items could be promptly and decisively brought to a lower destination through a quick turn of his hand.  I like to think of these moments as opportunities to check your assuredness or preparedness: stress testing a la ZMan. If you are a TypeA personality - I guarantee you he will readily break you of all ideals of perfectionism and certitude within 3 meetings.  

So there was hesitancy, and sensory toys, and visual supports, and calm voices, and a TV even, but no amount of verbal coaching or coaxing was going to do: Zach knew what needed to be done - 2 minutes in the chair without any support.  The visual timer app was set and ready to go.  And so a few minutes passed and at some various point, after being told that once he waited in the chair for 2 minutes he could then leave, my WonderBoy did what had to be done and I am feeling slightly optimistic that we might actually have a shot of getting my boy finally away from the damned "papoose".

So here's to next week, and the week after that and to all the parents who cringe at the thought of bringing their child into the dentist, or doctor for that matter. 

And by this post I hereby present today's adventure in a few pictures...

Walking in - No Problemo!

 

Checking out the Sensory Toys

 

 

Looking at the Visual Supports but Not Totally Convinced

 

He Did It! Let the 2 Minute Timer Begin

 

 

2 Minute Timer Complete and Willing to Pose with the Team!

I'm Outta Here!

What might seem like no big deal to others was a victory for us. We'll take it and look forward to the next target! Ratchet it up baby!

 

Hello Good People of the Internet! and Hey there to the rest of you.

 Welcome!

 

For those new to me - I ask that if you have and sense about you you just walk away.  There will be lots of ASCII characters coming at you -most of them a stream of consciousness with much like one of my beloved childhood characters will feel like I am a "Bear of Little Brain." (I welcome those who are reading this to respond with who that character is) I am currently in the process of converting an old blog to this new site - so please be aware of updates coming frequently!

 I want to take a moment to invite you to my take on life, otherwise often referred to as a roller coaster by civilians, but those of us drafted into this far more involved world of special needs and autism will recognize the trek as a game of whack-a-mole and nothing less will do.

On top of the unique features of my most beloved loved ones, I am currently in the enviable position of having to decide what I want to be when I grow up as life has put me into a state of ultimate transition - the loss of my parents, realization of the profound nature and absence of resources for my son as he rapidly approaches what we affectionately refer to as "the cliff" (entry to adult special needs services), late entrance to requesting support for my daughter with disabilities, while learning that I was no longer going to be given the privilege and ultimate lifestyle of eating bon-bons, watching soaps, and lunching with the girls as a stay at home Mom and wife to said special needs children.

 I am in dire need of words of support from any and all who choose to offer them. So here I am. And if life has filled you with rage and you need to blow off steam by deciding to take all the pot shots at the languishing gazelle in the Serengeti who has already been partially mauled by the cheetahs as well as bits chewed upon by the those darned laughing hyenas with various pejorative curse words and negative imagery, the management asks that you use appropriate grammar and punctuation when you do so. 

1st Communion: Alleluia

Two things made me happy today. No it wasn't the fact that my second born with profound disabilities made his First Communion. No it wasn't that the menu I prepared came out amazing, and that's good because that delectable tenderloin is some expensive stuff.  The things that made me laugh was that my son ripped one during his First Communion service (the unwieldy toddlers behind us masked the thunder, yeah for noisy kids!) and upon receiving the consecrated host at this most sacred of events, asked for seconds.  No kidding.  We still need to talk to Father Peter about that one - I think he was baffled at Zach's muddy verbal request ("More,please") and his gesture, Zach has his own sign for "I want" that anyone who works with him knows: repeatedly pinching is index finger and thumb together.

This event for Zach was more than making me happy. It gave me so much peace. To those who would like to pursue this sacrament for their own child, I encourage you to reach out, and reach out again (it may take a few tries) and do what it takes (Zach is fairly complex so we didn't drop him off and say good luck - we got personally involved, we were the aide). It can happen. It has happened for others. To me this went beyond tradition. For my atheistic/agnostic friends, who are already cringing at this post, I can only say that this sacrament feels so sacred to me - that it puts Zach in a different spiritual place, that it might even change his course. 

 

Please don't credit me with anything more than the decision to try. To the parents who went before me and did it, thank you for giving us confidence to know it was possible. For those who encouraged us to try, thank you, I needed that push. For his Godparents, who showed their pride and support for belonging to him and his faith journey, you are not just a title, you are the real thing. For the staff that made it happen, thank you for the amazing gift. For the Church, Blessed Sacrament Church, who opens the doors for us and others, you are a blessing. And to God who gave us all these amazing people who love us just as Jesus intended, I have had my doubts, but these people you sent to us have renewed my faith. To Zach, I wish you the peace within your soul that this sacrament was intended to offer, and I hope that if not now, maybe one day, you will realize that you brought out the best in a lot of people. 

Peace

What is this Puzzle Piece about anyway?

I was recently asked what the meaning behind the necklace that I made is.

The necklace in question is this: (And they are for sale - $8 plus S&H )

Historically, the puzzle piece was the logo embraced in 1963 by the British organization now referred to as the National Autistic Society. The original logo included an image of a weeping child in the center.

 

  

The group described this logo as: “The puzzle piece is so effective because it tells us something about autism: our children are handicapped by a puzzling condition; this isolates them from normal human contact and therefore they do not ‘fit in’. The suggestion of a weeping child is a reminder that autistic people do indeed suffer from their handicap.”

Some may find this description very offensive – but contextually I think it is very understandable. At this point when this logo was derived, autism was still not a diagnosis – many of those who had autism were diagnosed as schizophrenic and even more interesting, a very popular theory of “refrigerator mothers” was the prevalent thinking of causation. (Like those poor mothers didn't have enough to worry about! To be blamed on top of it! Ugh) But I digress...

For many of us parents, I think the symbol makes sense – from our perspectives this disorder certainly is complex and varied, with a lot more mystery than clarity.  Again – this is from the parent perspective.  The variance amongst the population with diagnosis is represented by the colors within the puzzle piece. Autism crosses nearly every demographic equally – race, color, creed, country, socio, economic … all but one: gender. Autism prevalence is 4x higher in boys than in girls.  (NOTE: the two colors of blue used are traditionally male associated.)  But the spectrum is just that, unpredictable and varied, at times beautiful with a side of rain – and the colors could represent that as well – autism may make one quirky and skillful or it could make someone speechless and seriously aggravated and every combination in between. 

One day, I hope future generations will look back and laugh – at the fact that we found autism complicated and unknowable, and difficult. We have a lot of work to get there. For now, I can only ask for your understanding and your awareness. I appreciate anyone who is willing to symbolically show that.  When a parent sees this symbol, as they do a knowing smile of support when a child has troubling behavior, it makes them feel less alone. And that means the person they are supporting with autism gets the benefit of a parent who feels encouraged. And I personally know how important encouragement is when sometimes I feel not up for the challenges autism makes me face. So thank you for asking and for willing to wear my simple necklace!