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Archive for the ‘Personal Tales’ Category

Meet Olando Rivera: Where Kickboxing Background & Autism Connect

Last week, I had the incredible opportunity to interview one of the most prominent dads in the Tampa Bay autism community, Olando “The Warrior” Rivera. The former kickboxer, whose record boasts several championship titles, now is a successful business owner running the B.A. Warrior Gym and soon opening the Warriors for Autism Fitness & Sensory Center specifically designed for individuals with special needs. The center inspired by his own son and other children on the spectrum will have a sensory room, zip line, rock wall and various activities that are geared toward children and young adults with sensory sensitives.

As you can imagine, I was a little nervous meeting someone with his résumé, but it turns out he was a really nice guy who seemed to genuinely care about all the kids that walk into his gym. As I was listening to his story, I couldn’t help but feel like it could be the plot to a movie; star athlete who had it all, life tries to knock him down, comes out in the end happier than ever, knowing family is more important than anything else. Listed below are the questions I asked Mr. Rivera, followed by his responses. Hope you enjoy!

olando

Coach Olando helping a young boy on the Sensory Center’s rock wall

 

Q: Please describe your mission here at the B.A. Warrior Training Center. We can all read it online, but I’d like to hear it straight from your mouth.

A: “The mission here, our vision, is to have a place where the kids can come in and have fun, but at the same time, not feel like they’re overwhelmed with all the noise. I can’t have it loud and noisy in here, or have a lot of bright lights, because as you know, I have an autistic son. He’s 17 now, and I want him to know that when he comes into this room, he can have fun and not squint his eyes or cover his ears and stuff like that; I’ve been through this with him his whole life, so I understand what he needs. I basically designed this place alongside my wife with the thought of helping these kids, and my son, to not only have fun, but to get some exercise. Can’t get in shape when you’re sitting at home on the computer!”

 

Q: What sort of growth do you usually see in your disciples, from when they first walk in here to when they leave for the last time?

A: “That’s another reason why I’ve been so inspired to do this program. Since I started this back in 2000, what I’ve seen throughout the years with all the kids that have come through those doors to train with me, is that when they got here they were very shy and scared, and didn’t know what they were getting into really. I’ve seen them transform from that into saying, ‘Hey this is so fun and cool!’, and it had to do with simple things that I did to help them, which I’ve also done with my own son. I figured if it works for him, I could probably duplicate it with other kids. Why not help as many of these kids as I possibly can? The best feeling is when I see some of them go from non-verbal to verbal, and actually say, ‘Thanks coach!’, it’s magical. It shows how much they truly do care. The key, I believe, is the eye contact. Once you’ve established that, and they’ll look at you right back, you know you’ve gained their trust.”

 

Q: How did getting that initial diagnosis for your son change things for you and your family?

A: “That one’s really close to the heart. When we found out, we didn’t know what it was. Who did? He was 5 when we found out, so going on 12 years now. The first thing that came to my mind was, ‘I’m a champion athlete, why does my son have something like this?’, and it was hard for me, as a man, to wonder how could he have gotten this from me when I’m so healthy? It caused a lot of problems between me and my wife; shifting the blame on one another, going back and forth, it was bad. But through the grace of God, we realized fighting wouldn’t solve anything, and that he’s our son and he needs us to help him. Being completely honest, I was in denial about it, thinking he’ll be fine, or “grow out of it,” but as the years went by, nothing changed. My wife Deena stayed on top of it though, making sure he always got what he needed. They called me a warrior when I was fighting, but she was the real warrior, doing what needed to be done for her kid. When I realized that, I accepted my son for who he is, and began my mission to help out other kids in similar situations.”

 

Q: There’s an unfortunate stigma against dads of children with autism, that they “can’t be as involved as the mom.” What would you say to any dads out there to convince them to be proactive in their child’s life?

A: “It comes down to the last question I answered. I was in denial as a dad, I didn’t want to believe it even existed, let alone that my son had it. I’m sure there are a lot of dads out there who go through the same thing I did. But that’s crazy, because if you think that way, then you’re not really a dad. When you’re a parent, you take your child, and you deal with the hand you’re given, and you do what you have to do to ensure they’re the best they can be no matter what’s involved. Moms are going to do what needs to be done almost always, because they carried you! They know what’s best for you by instinct, but many dads don’t have that. What I can say though, is to just remember: it’s not about you, it’s about your kid. Just love them and take care of them, and I promise you’ll do just fine.”

 

Q: Thank you so much for doing this. Last thing, can you give any general advice to all the dads out there who may be reading?

A: “It’s no problem, glad to do it. My suggestion to the dads out there: get down on one knee, look them in the eye. MAKE that contact with them, if they look away, pull their face back to yours. Let them see you, because once they do, it breaks that barrier they put up automatically. “There’s nothing you can do to change your situation, other than change your situation.” Doing nothing will change nothing. I’ve seen it consistently ever since I opened this place up. When you work hard to make things better, the change you will see is contagious, and it’s one of the best feelings in the world. That’s the reason I’m here today standing in this building with you, is my determination to make things better, and that is my advice to all the dads out there.”

olando 2

Olando and his wife, Deena.

 

  • G. Sosso

 

 

Autism & Parenting: A Personal Tale

For many families with autism, the name Temple Grandin is well known. While Dr. Grandin is truly inspiring and a beacon of hope, for me the hero in that family goes by the same nickname as me and many of you, Mom… Eustacia Cutler.  I can’t imagine facing the challenges and decisions she made at a time when she did not have support of her community and services such as CARD like we have now.

I just want to note that if you are reading this, and you are a Mom (or a Dad taking on the role of Mom), you are doing an incredible job! One thing that Eustacia did not have to contend with is the undue pressure of social media to contend with setting an unrealistic standard of motherhood. It is human nature to only want to share the positive aspects of your life, but in doing so a much altered reality is portrayed. It is in the sharing our own struggles and asking for help that we can help each other and then truly celebrate the successes, however small.

Let me share with you a recent episode of my life that, at the time, I thought was definitely a mom failure on my part. I’ve gotten quite spoiled as of late with minimal meltdowns for the past couple of years by my ten year old. I can’t quite say that about myself, but of her I can.  Of course she would correct me and say, “Uh Mom, you mean disasters”. So this particular disaster was triggered by me forgetting a cardinal parenting rule.  Don’t commit to something you don’t deliver. The day before my daughter had asked me if we could stop somewhere on the way to school and get a breakfast sandwich (and a donut) instead of her eating at home or school as is the norm. I said, yes, and added quickly as long as you are ready early. However, I did not expound on that or provide a definition of what ready and early was.  She got up very early that day, but about five minutes before I intended to leave I checked on her and she was still in her PJs!!! It seems getting up early only provided her a chance to get distracted and lose track of time. With my reminder she jumped into action but at this point I knew we wouldn’t be able to stop and I made her breakfast.

We got in the car and I gave her the breakfast to eat on the way. She ate it without complaint and was singing along with the radio. Then we got to her school. She asked why we were there. I said, so you could go to school. She asked about stopping. I explained she wasn’t ready so we weren’t able to stop today. This is normally where in my spoiled state she would take it in stride and the day would keep going. But this time….it stopped. We pulled up to the car rider line where the safety patrol was and she wasn’t budging. So I pulled up further where the ESE teachers and Aides were and she was in tears and repeating, “I am not ready; I was supposed to go to the store”. They tried; I was out of the parked car at this point trying all my tricks. It wasn’t working. I was trying very hard to stay calm as I had to present to about a hundred people an hour later. I thanked the two teachers that stayed out there with me for the twenty minutes and told them I would drive around to the front office. There was a part of me that thought if you had just taken her and been late you could have avoided this. But I was not giving in. I drove to the front of the school, tried one more distraction reset, “Should we park on the right or the left?” in an animated voice.  “Insistence” was in the backseat still wanting her original plan.

We parked. I think she realized at that point I wasn’t giving in and so she got out of the car, rushed through the office and headed up to her classroom. I followed behind with her backpack, getting a classroom pass, etc.  I caught up with her at the top of the stairs. She told her teacher, “I am having a rough morning”, and I passed the torch. It was reported back to me that she ended up recovering well and having a great day. The next morning, she was ready to go 15 minutes before we were scheduled to leave without prompting from me. Maybe it wasn’t a failure after all?

I have long since given up the “I can do it on my own” pretense. I often call up my fellow parents, CARD consultants, family and friends when facing a new twist and turn.

  • Michele Jewell, CARD Constituency Board Chair

Farewell to CARD

As I “retire” from CARD-USF to move on to a hundred other activities, I have been reflecting a lot lately on: how much I will miss everyone at CARD; how much I will miss USF, which has been part of my life since 1967; how much I will miss being a librarian, even if I’ve been kind of a “pretend” one for the last couple of decades; and how much I will miss keeping up on the latest research, publications, and news, though the osmosis effect of social media ensures that I won’t miss much.

Mostly, I am thinking about how much things have changed for families since my daughter was diagnosed in 1992:

  • Her original diagnosis of PDD-NOS no longer exists as a diagnosis
  • Asperger’s disorder no longer exists as a diagnosis
  • Children diagnosed with autism spectrum disorders (ASDs) in the early 90s were very likely to be placed in programs designed for children with emotional/behavioral disorders, or intellectual disabilities, but rarely in programs designed for children with ASD diagnoses. Very often, children with ASD were placed in center-based schools. We have watched education evolve from a dearth of teacher preparation and services, through developing expertise thanks to professional development efforts of school districts and organizations like CARD, through segregated settings at neighborhood schools, to a current landscape in which many more students are fully or partially included with their peers in regular education classes and activities.
  • Interventions have gone from consequence-based, punitive “treatments” to antecedent-based, positive supports that seek to make the whole environment supportive and oriented toward increased communication and prevention of challenging behaviors.
  • Community venues such as child care sites, summer camps, restaurants, movie theaters, theme parks, resorts, zoos, orchestras and museums have gone from being fairly unwelcoming environments, to seeking out training and support from CARD to open their doors and programming to customers, visitors and employees who have ASD.

One of the most beautiful advocacy movements that has emerged over the past twenty years has been the self-advocacy movement working for acceptance of all individuals with or without diagnoses. This movement has recently been represented most visibly by the author Steve Silberman, in his book NeuroTribes: The Legacy of Autism and the Future of Neurodiversity, published by Penguin Random House in 2015. Many public libraries have this book, or can get it via inter library loan if you are interested in reading it. This movement seeks to move from “awareness” to acceptance. Once individuals who have traditionally been marginalized by society develop their own voice and presence, it becomes impossible for them to continue being ignored, and changes happen quickly.

As the parent of an adult with ASD who is very challenged by social & communication issues, I will take with me into retirement a renewed sense of my daughter as an individual with unlimited potential who deserves to be accepted fully by her community, even if she needs a bit more assistance in developing her own voice. But it should be her voice – not the voice of well-meaning people thinking they are speaking for her.

Thank you CARD staff, families and friends, thank you everyone in CBCS and USF for the gifts of your friendship, wisdom, and insight. I leave here the better for having known and worked with all of you.

– Jean

jean and anna 2

The Importance of Person-First Language

You may have heard the term “person-first language” before (that’s person-first, not to be confused with first-person, a point of view); simply put, it’s a manner of speech which aims to avoid any kind of dehumanization or marginalization amongst those with disabilities. Now, there is some controversy surrounding the usage and importance of person-first language, but we here at CARD believe its use to is of the utmost importance. I’ll go more into it in this, but if you would like to read more about what person-first language is, here’s a link to a page explaining it in great detail: https://www.thearc.org/who-we-are/media-center/people-first-language.

 
First of all, what is person-first language in the context of speech and writing? Let me give you an example: instead of saying “that autistic boy,” we prefer “that boy with autism.” Autistic is an adjective; i.e. a word that describes or defines something/someone. In our opinion, a person should not be defined by their disability, be it autism or some other condition. Autism may be a part of who they are, but it is not the main aspect of their identity. When describing others, most people will say, “that girl with the long hair,” not “that long-haired girl.” The long hair is just a part of who she is, not what defines her. While not an offensive or even particularly distasteful example, the same concept applies here. If we utilize person-first language for such mundane things as hair color, then why not do the same for autism?

 
There is one other thing I would like to add, and it’s the main reason why I personally advocate the usage of person-first language, especially in regards to autism. There is a particularly nasty trend going that’s been going around, mostly on the internet, which uses “autistic” as an insult for behavior and/or actions deemed undesirable. To use a personal example, I have played many games online where I witnessed someone make a simple in-game mistake, to which many will viciously attack that person, calling them autistic just because they didn’t fit their definition of perfect. It’s even happened to me, and it’s very upsetting. For a long time, “retarded” has unfortunately been a rather prevalent insult, but now the vocabulary is expanding to include autism specifically, and it saddens me. The thought that calling someone “autistic” carries such a negative connotation is a disheartening thought, but it’s just another reason why I believe person-first language is the way to go. Being on the spectrum is nothing to be ashamed of, and you should be proud of who you are!

  • G. Sosso

 

People First pic

Still Learning from My Adult Child with ASD

noise
Long ago, I stopped accepting most of the things that are supposed to be true about people with autism spectrum disorder (ASD). Recently, I was reminded about two of these supposed “truths”:
     1. People with ASD make meaningless sounds such as humming, and sing or recite content from movies just to hear themselves make noise.

     2. People with ASD have sensory processing issues that must always be controlled externally by altering the environment or providing them with additional tools such as weighted blankets, noise-cancelling earphones, or other sensory-calming products.

Whether verbal, non-verbal, or somewhere in between, our children have a lot to teach us about how they perceive and process the world around them. Perceptive parents quickly learn a lot from their offspring – about ASD, about children with other differences, and most importantly, about their own children as individual human beings.

This is a little story about tuning in to my 26-year-old daughter, whose habits, movements, sounds, and sensitivities I know almost as well as I know my own, though I don’t always understand the communicative intent of her behaviors.
Three mornings a week, a van arrives to transport Anna to her day program.
Every morning for several years, she would pace, recite movie lines and hum in an agitated manner with her fingers stuck in her ears in anticipation of the van’s arrival. As it pulled up in front of the house and the horn honked, she would gasp loudly and push harder on her ears, then walk out to the van holding both her lunchbox and her ears.

For the past month or so, there has been the same van, same driver, and two quick honks on the horn, all of which have made much of the morning more predictable and easy. However, the time of arrival still varies each day, and that still meant there was enough unpredictability that waiting was anxiety-producing.

Over the last few weeks, Anna would pace, cover her ears, hum and chatter only for a few minutes, then as the time drew nearer for the van to arrive, remove her fingers from her ears, and peer intently out the window. Inevitably, within 60 seconds of the time the van actually arrived (how does she KNOW that?!), she would softly insert her own closely approximated version of the tone, pitch, and time interval of the two quick horn blasts into the rest of her chatter. “Yada yada yada yada beep beep yada yada yada yada.”

It took a few days for this to get my attention, but once it did, I also noticed she no longer gasped and clamped her hands over her ears when the van arrived, and it dawned on me what she was doing. She was preparing her sensory system for the unpredictability of the arrival time, using her own version of the sound of the horn, something like an auditory immunization. It’s brilliant! All of the muttering and chatter seems to be meaningfully connected to the two little honks she makes.

So – two things are still true, after all these years:
• never assume odd noises and sounds are meaningless, and
• it’s easy to miss noticing when our children teach themselves calming and self-management techniques on their own and apply them to specific circumstances.

This story does not negate instances where self-produced sounds may be stimulating or reinforcing for unknown-to-us reasons, nor does it argue against the anecdotally reported benefits of sensory-integration tools and techniques. I appreciate fellow parent Beverly K. for pointing out that we especially need to remember many of our younger children have not yet developed self-management and self-regulation skills to help them deal with bothersome sensory input. For parents of younger children – when people tell you, “It gets better” – this is the kind of wonderful thing they mean.

Watch and listen closely! We never know what our children, no matter what age or ability, might have to teach us!

  • Jean

Guest Blog: “Interfere with her”

These were the final words of advice from the child psychologist who diagnosed my daughter with ASD over 23 years ago. At the time, I understood neither why this was so important, nor how to do it.
As I read books and articles, connected with community service agencies, therapists, and most importantly with CARD, the picture slowly began to emerge.
Left to her own devices, my daughter would quickly develop rigid habits, obsessive rituals, and limited interests. It became important to offer her alternative opportunities and experiences, although each new experience often led to yet another expectation, habit or ritual. But at least they were expanding, right?
The research literature years ago was more focused on interventions than it is today. These days, most research dollars are aimed at understanding genetic and environmental causal factors for ASD, and thus possibly identifying biomedical treatments for the core symptoms. To date, though more and more physicians are prescribing medications for children and adults with ASD, none successfully address the core symptoms of communication/social skills and restricted and repetitive interests and behaviors. Most medications simply attempt to address non-core symptoms such as anxiety, aggression, depression and OCD.
As for interventions, most researchers are satisfied that methods based in various forms of applied behavior analysis are considered the most effective. Other interventions based in relationship development, cognitive behavior therapy and mindfulness are among those considered emerging, promising, or even sufficiently evidence-based to be recommended by referring professionals.
As a parent, I tried to identify what all the numerous types of interventions had in common, and the one thing I kept thinking of was the psychologist’s words to me as I was on the way out the door: “Interfere with her.” These interventions all, one way or another, attempt to draw individuals with ASD away from habitually limited patterns of thought and behavior, and expand, or generalize, new skills into more socially- and community-based interactions.
So…how do we do that, as parents, when our children can’t be in therapy every waking hour of the day, and most of us cannot afford the maximum recommended amounts of interventions suggested by research?
Some interference occurs naturally, through regular family activities such as worship services, or when children reach an age of eligibility for school services, whether that is at age 3 or 5.
Entering new environments such as school, therapy, or community-based athletic, recreational, or arts classes, can be problematic and stressful. However, if the transition to a new environment is handled according to the child’s need for information through social experience stories or other visual supports, most children with ASD adapt well and come to anticipate the regularity of the new environment. Rules and expectations for each setting may be contextually-specific, but are usually readily accepted by our children, once they successfully comprehend what is being asked of them. The importance of this step cannot be overemphasized.
Other ways of interfering may take place in the family context at home or in the community by deliberately adding activities to a wall calendar or posting flyers of upcoming fairs, football, baseball or hockey games, concerts, or even unique community events such as the recent “Light it Up Tampa”. Each event or activity is a great opportunity to expose children to new environments with new sets of rules, expectations, and perhaps even inspiration.
Just be aware, this may create dozens of new expectations for events that occur weekly, monthly, or annually. In our family, each season is replete with events my daughter anticipates months ahead of time, and we are a very busy family, especially during fair and festival season.
However a family chooses to “interfere”, one thing I have learned is that the gentler that interference can be, the better and more effective. Roughly pulling a child away from a session of lined-up cars or recital of lines from his favorite Disney movies will create resistance without adding a new skill or motivation to divert his attention. Supporting a shift through advance awareness and rewards, which can be faded as the experience itself becomes more reinforcing has worked well for us.
Having said that, the tendency to engage in rigid, limited or ritualized behaviors is still present, but the people who work with my daughter who understand her need to be gently mentored and guided into new areas of experience are still the most successful, and she seems so much happier for it.

Jean

anna clay

Notes from the Universe (A Love Letter)

“A sense of having been forgotten by ‘normal’ life is common when we are going through difficult times, as if we are trapped in a parallel universe where broken people live.”  

                                                         – Sharon Salzberg, Love Your Enemies, 2013

Dear world,

When my daughter was diagnosed with autism twenty one years ago, there was an overwhelming perception that our family had been snatched out of the only universe we assumed existed, and dropped into a parallel reality from which we could see friends, family members and colleagues continuing along in a brightly lit time-space continuum to which we no longer belonged. Our new universe moved slowly, was a little darker, and the force field between the two realities seemed impenetrable. It often felt as if people in the other world had the power to reach out and pull us back in, but they chose not to.

The assumed sense that one could move about and participate freely in the community was replaced with a list of all the places no longer among our destinations – day care centers, libraries, concert venues, movie theaters, churches, music lessons, art classes, dance class, junior sports leagues. Some of this had to do with being told my child was not welcome, and some had to do with her inability to participate, sit quietly, pay attention, or perhaps my unwillingness to endure the stares and comments of well-meaning people who thought I simply had no control over a three-year old child.

We were desperate to find a way to “fix” her so we could rejoin life in our former reality. In our new life, her existence felt mostly tolerated, her experiences dramatically restricted, and her future certainly seemed bleak. The burden rested squarely on her family and specialists to get her back on track.

No longer envisioning her first day of school, her prom, graduation, college and marriage, I was instead learning about mysterious agencies and services that only existed in this strange new world. We became polyglots in many new languages – funding silo-ese, intervention jargon, doctor speak, ESE-ish and person-first-disability-advocacy talk. Our speech became unintelligible to our former compatriots. Those who stuck with us did so because they understood the language of the heart, which presents no barriers to communication.

Agencies, systems, services, organizations all blended together in a maddening soup. Which phone number leads to clinical services, which leads to funding information, or which leads to parent training? I’m sure I called some places two or three times. I can’t remember how many times I heard, “But that’s not what we do.” It took quite a while to understand, from the organizations’ points of view, that their missions, funding and service mandates were precisely defined by their administrative, funding source, or legislative overseers, and it wasn’t the person on the phone’s fault that he or she could not fix my child, starting tomorrow morning.

After countless phone calls, workshops, conferences and meetings, I finally assembled a map of this new universe.

My daughter worked her way through her new world effortlessly. Those around her scrambled daily to figure out how to smooth her path so that she would never know she was not part of the brightly lit, happy little world from which we had been summarily dismissed.

Through luck or grace, she managed to draw to her side the best of the best in all of the specialized professions. She miraculously found her way across the force field into some beautifully lit rooms from that other place, and from there, managed to draw even more wonderful people around her.

One of the greatest, most profound changes that took place in my own worldview came from one of the organizations I called early on, but set aside because they “didn’t do that” when I asked about direct interventions. This was the Center for Autism & Related Disabilities (CARD) at USF.

By chance, I ran into a CARD staff member at a workshop I was attending about 18 months after my initial contact with the organization. The staff member asked how things were going, and I said, “Okay….” She sensed the implied “but”, and thus began an enduring collaboration and friendship. Over the course of several home visits, quite a few community meetings, and many phone calls, I learned from the CARD consultant that my child was intelligent, funny, had tremendous ability to learn new skills, and most of all, that she was not “broken.” I began relating to my own child in a very different way.

My conversations with teachers and other providers changed from a desperate tone of “somebody has to fix my broken child” to “how can we work together to help each other give my child the supports she needs to participate more fully in the community?” Her school worked collaboratively with CARD and others from the university to learn more about positive behavior support, which at the time was a fairly new concept. Together, we created visual schedules, choice cards and other tools to help reduce challenging behaviors and increase her ability to understand and communicate with others at school and at home.

I began to see CARD in a different light, in terms of its long-term value in the community. Eventually, I became employed at CARD, working in the resource office. The hard-working consultants and other staff members are some of the many silent heroes of our time. Their work is not always something that makes a big splashy difference overnight (though sometimes it does – remember the Not-Too-Haunted Hallways event?). However, a steady, faithful commitment to the core values of community capacity-building, inclusion and quality of life does make a difference over the long haul. It changes how people view our children and adults with disabilities such as ASD. It changes how libraries, zoos, museums and hotels perceive our families. It changes how welcome students are in regular education classrooms. It changes how employers think about the people they might want to hire when filling positions, or how they relate to employees facing challenges of raising children with ASD and other disabilities.

Children being diagnosed with ASD today are coming into a very different world. There are many more options and supports, and it is becoming more possible for families not to feel as if they have been booted out of their own lives into an alternate, far less desirable reality.

Autism has become a word almost everyone has heard — a diagnosis attached to someone related to, or known to, almost every person you meet on the street. Places in the community that did not seem to welcome our children now approach CARD to ask how they can become “autism friendly”. More students with disabilities, including ASD, are being included in regular education classes, after-school programs and junior sports leagues. More programs are being designed to help young adults with ASD successfully attend college or become employed in competitive, meaningful jobs. More and more, people are thinking about long-term, big-picture changes we can make to help our children and adults with ASDs live fully included, meaningful and fulfilling lives as part of the community.

Without a sound or much fanfare, the illusion of a sad, dark, separate but parallel universe is melting away to reveal to everyone that individuals with disabilities never were “broken”, or truly “other”. We all belong to the one and only universe. Our children, too, have gifts to offer and challenges to overcome.

This is a two-way realization. In fact, it seems that people in that brightly lit, smoothly-moving “other” universe always did want to reach out, but until recently, did not know how.  Increased outreach and awareness have shown there is help, and where to find it.

So – to the unsung heroes of CARD and the many other organizations working every day to raise awareness, build capacity, and fundamentally change the (one) world in which we live – thank you!

Sincerely,

Jean MacNeill

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