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!

The Mundane and Tedious is still a Life Made Extraordinary

Sometimes analytical looks a lot like pessimistic.  Indeed, if I reflected only on the probability of things instead of the possibility, I would be just that.  In a world where so much is unfair, it's easy to be of the "woe is me" and "people suck" sort.  And there are days ... well, yes there are days.

But indeed there are days - as long as I live to see another day, I see that as the opportunity to change statistics.  Today of course is a good day, so my attitude is a reflection of my feelings.

If there is anything I realize, it's that in the heat of battle, when things are dismal, I need a record of when things aren't to help get me through, to remind me it isn't always bad.

Without people who are exceptional, my attitude would be much different.  What makes for exceptional people?  A lot of people like others who are famous, wealthy, etc. They hope it will either rub off or fall off.  I am always suspicious of such folks, myself.  In such an laborious if not unpopular life as I have, I am blessed with meeting some of the most amazing people on Earth.  People who WITHOUT being asked, or being paid, or being recognized, or earning credit, reach out to us.  These people stun me every time. And because of Zach's autism, we have met way more of these exceptional people than the average person.

Take last night as an extraordinary example.  It was our Thursday night baseball game - through the Syracuse Challengers - a league based in the Little League for kids (and now adults too!) with disabilities.  Some 450 kids get to wear a jersey, grab a bat, feel the dirt under their feet just as any other kid. The concept of this league, let alone the number it serves is just amazing.  Run by families with special needs kids - they have been able to capitalize on the great intentions of ordinary folks to generously donate so that no one is turned away and no one has to pay to play.

But while the concept of the league along is amazing - it provided way more opportunity last evening than just my child's opportunity to play.  Last night, 2 of my son's therapists - who did not know one another, who did not  ask us, nor did we ask, showed up to watch him play.

The one therapist is about to move out of the area and I am sure has plenty to do to get ready. And he is a single young man who could probably find a lot more exciting venues to show up at then the 2 inning no score game of my son's. He included some baseball skills into his therapy with my son. And he even helped him to bat at 2 of his games.

The other therapist brought along her own family - her husband and son, age 1.  Like having a full time job and a family of her own, and a newly walking child doesn't keep her crazy busy!

When I contemplate their attendance, I am blown away; all beliefs of people as being inherently selfish seem to be inaccurate.

And then there is Zach's aide.  She has constantly encouraged me to have Zach do things I would otherwise be too wary of attempting. Things like going to the movies or out to dinner.  We have had so much fun taking on the challenge of bringing Zach to such places knowing she was there as our safety net. And more often than not, he has risen to the occasion. She likely is unaware of how brave she has helped me to be.

And least not are the kids in Zach's class, who when given the opportunity, choose to spend their free time (playtime) to engage with Zach.

These people are the very people that help make me get up in the morning after a night of no sleep when the future is looking fairly dim.  The motivation will always be to help and support Zach, but these people reinforce my efforts, which results in more opportunities and successes for my dear son.  They are the ones who didn't need a special needs child of their own to recognize the needs and supports a family like ours has.  I was not one of these people myself.  I needed Zach to teach me those lessons.  These people are gifts to the rest of us.

I live a very extraordinary life, even if it does involve the mundane or even tedious. Sometimes I actually feel bad for everybody else.

Luke: 23:34 Rewritten

'Father, forgive them; they do not know what they are doing.'

I came across this passage today watching a young black man in Missouri talking about peace.  It made me weep.  And it's been awhile since I have done that.  We haven't been going to church for a bit, not feeling supported enough to get there quite honestly.  I struggle with religion a lot.  But my faith is a different thing.

I have become ever increasingly frustrated with our situation.  People have made remarks that are very ignorant and hurtful that I really though out to know better.  And then a random chance meeting while walking my dog brought me to someone who out of the blue, worked as an aide substitute in our home school district.  She told me of a few children with autism that she had.  She gave such an amazingly interesting perspective of what it was like to be in that situation.  She, without having any intent other than sharing, revealed her thoughts and feelings on the situation.  She is a very intelligent woman, who left her career to raise her 4 beautiful boys.  She signed up to do some subbing and landed in the shoes, on occasion, as an sub aide to special needs students.  For once, I didn't feel crazy as she laid out her concerns before me.  Where was the training? How does this work?  We laughed as I told her as a parent I still would like the answer to those questions for myself! 

Life threw me a bone with this simple connection.  Is that God? I honestly wish I could tell you.  But it is good.  Faith may mean to some believing that something is in control of all this mess.  But for me, Faith means believing that in all this mess, there is still Good.

I have know that people out there just don't know what to do with a child like mine.  It isn't easy!  I have no idea what to do at times.  If anyone ever claims to be an "expert" they just need to be slapped.  There is no expertise in this stuff.  There may be experience and background - but there are no "autism whisperers" out there that can handle every situation. 

In the end I probably need to say more often than not to myself: "Thou who has some sort of omnipresence, forgive me, I don't know what I am doing, but even so, I am going to keep on trying. "Thus began the Goddess of Indomitable Spirit