Talking Letters

I was graciously interviewed on Monday night by a remarkable woman.  I hope someday to tell her story.  During the interview, I read the following post.  I wrote this a few weeks ago, and just never posted it.  Ah, summer break how you mess with my writing schedule.

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Communicating with an autistic person has more variables than I could ever name.  Due the many degrees of autism (hence the spectrum) you sometimes require many ways to say the same thing.  But one thing is crucial, no matter what you are going to say, keep it simple; especially for a young child with autism.

When Ryan was newly diagnosed, I was on a deep learning curve, reading every article, attending every seminar, talking to whomever I could.  Aside from learning how to control his erratic behaviors, my biggest concern was his language. For I was certain, his loss of language was the key to his frustration with the world.

After a few years of behavior modification, and speech therapy (with the aide of sign language) Ryan was able to retrieve his words. Nothing short of miraculous to us, for then most of his frustration was alleviated.   We were carefully trained to speak to him with few words so he could process them.

I once attended a seminar where Temple Grandin was the keynote speaker. She described eloquently what listening to someone speak was like for her. She said it was like seeing words across a computer screen. If someone asked her a question, she would see the words in her mind and have to “read” them. Hence, it took her some time to respond. And if someone moved on to another question, she had to start over.  Sounded like a vicious cycle to me. But her words stuck with me and I took to heart the instruction of using few words and then…waiting. Needless to say, I still try to speak slowly to him, because I am a fast talker, even though he can now communicate on a level that would fool an unknowing outsider.  It still makes his life easy if I keep it simple.

Ryan recently discovered the captioning on his Kindle. Actually he saw it on my Kindle first and asked what it was. Not a particularly stellar moment for me (I was trying to secretly indulge in a guilty pleasure of “Orange is the New Black”). He was quietly standing behind me as I chopped vegetables while watching and he began reading the dialogue-out loud. Luckily it was an innocuous moment: no nudity or cussing, but when he realized he was seeing the words as they were being spoken, he immediately asked what it was. And then wanted it for his Kindle.   Much as I wish he would use his Kindle for reading, (but really, how could I ask if I use my Kindle for extracurricular too) he mainly uses it for “The Google” and Netflix. He is a master at searching for any show or movie he wants to watch, a modern child, for sure.

After a few days, I hear him narrating a movie he’s watching, not just the dialogue, but parts like “crickets sound in the distance”, “laughter in the background”. When I walked over to see what he’s watching, he says, “Look at my talking letters, Mom.”

Talking letters?

What a brilliant way to describe captioning. After all, they are letters that are showing what people are saying. Why I didn’t think of that?

Ryan reminded me you don’t need a lot of words to describe something. Keep it simple and your message will be heard. This time, he taught me.

Talking letters. Maybe I should copyright that…

 

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Choices

There are seemingly mundane things I plan, coordinate, and perseverate on, like getting my carpets cleaned. I revel in anything that improves the cleanliness of my house.   But something about clean floors is a downright religious moment for me. I come by that mania rightly–my aunts too had that obsession. I remember watching my aunt clean and re-clean her kitchen floor because it was streaky and felt sticky. So glad that trait came down to me. But back to my impending carpet cleaning: my random-OCD acted up and suddenly every inch of carpet upstairs had to be cleaned. I moved everything I could physically muster, off the carpets and into the bathrooms; then enlisted Dan to help me move the heavier things, like chairs and side tables.   I decided as long as the cleaner was here, perhaps he could clean the rugs downstairs too. Oh heavenly clean bliss was about to come my way.

Obviously what follows is, well, wet carpets and rugs.   Our wonderful carpet guy offered to leave his industrial fans to dry my rugs. I was thrilled! It’s the little things remember.

However, when my very routine son comes home and the house is in disarray, all my grand plans float away like smoke. My idea for blocking the stairs with a kitchen chair (so the dog won’t put his yucky paws on my clean carpet) and leaving the shuddering fans to dry the rugs overnight—were about to cause havoc.

At first, I thought priming Ryan would make it go smoothly. I explained the carpets were wet and things had to stay off them, like toys and dog feet. He seemed okay and I had hope it would all be fine-until we got home and he discovered the chair out of place and the raucous fans. Plus, all his toys in the family room had been moved from the distinct places he had put them.

As I started mindlessly sweeping the dog hair clusters the fans had blown from under the couch, I see Ryan making frantic trips back and forth to his toy closet putting toy animals away. I had to stop and concentrate over the din of the fans to realize he was bordering on tears.

How could I have been so caught up in the glory of fresh carpets that I overlooked how it would make it feel? This isn’t my first go round at dealing with change and Ryan–so don’t think me insensitive.  It’s the progress he has made; he rolls with things so much easier than when he was younger. He transitions to changes in plans with hardly ever a batting of his eye. He can tell me verbally when he’s getting upset. But today I’m not sure planning or priming would have helped. It was too loud and too many things out of place. The one thing he finds peace in is coming home to his house with all his stuff where he left it.  It shouldn’t have been a surprise.

I should have watched for his reaction as we walked in the door to the noise and the displacement of furniture. If I could have heard his gasps as we walked in the door, I would have stopped. But, I was deafened by the noise and caught up in the continual job of cleaning. It’s hard to stop once you start.

As I stood there with the broom and a pile of dog hair and watched his disturbed face, I knew I had a choice. I could stop his unease very simply. Though I wanted those rugs dry as quickly as possible, I realized it wasn’t worth it to stress him out. They are just rugs and will probably dry on their own overnight.  And I’ll just have to watch the mongrel dog to make sure he didn’t go up the stairs with his messy self.

Fans were turned off and put aside. The chair was put back at the dining table and I saw a visible change in him. He asked if he could put on a movie and then carefully began placing his toys where they belong. Peace returned.

I sat down to ruminate on my thoughts of choices I make for each of my children.  Simple thins, like how I choose to make their breakfast and lunch every morning (Dan helps too); how I choose to take and pick them up from school; how I choose special treats at the store; how I choose to spend a Friday night with them watching a movie; how I choose their happiness over mine and would everyday.  It’s worth every offering, even my beloved clean carpets to keep them happy.  I will forgo my silly cleanly pleasures–I will forgo anything for them.  And I will do this until I no longer can.

That’s when I heard the dog retching about to throw up…

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The Small Things

Years ago, we purchased bicycles for Dan, Jenna and I. Jenna was finally at the age we felt she could ride between us safely. We were thrilled to take on a family activity like bike riding. We added a child seat for Ryan onto Dan’s bike, assuming Ryan would enjoy it. The struggle Ryan put up getting him in it, and the crying that we had to endure, contradicted any fun for any of us. Needless to say our dreams of family riding times were dashed.

About a year later, prior to a trip to Yosemite, we had begrudgingly decided not to take our bikes, because we had no way for Ryan to particpate, when our neighbor generously offered us a “tag along”. (A tag along is a ‘half-bike’ with only a back tire, handle bars and pedals, that fits on the back of a regular bike.) One does not need to know how to ride a bike to use a tag along, just be able to stay seated. Fortunately, Ryan actually sat on this bike and seemed to be happy doing it. This tag along allowed us to take our bikes to Yosemite, and many other happy destinations. It provided us a sense of security to have Ryan safely behind one of us.

We used the faithful tag along well beyond where Ryan fit on it, mainly because we could not find a suitable replacement and no bicycle shops seemed interested in helping us modify it. Plus the fact Ryan continually refused to learn to ride a bike. However, I am proud to say, this past summer I put my no-quit attitude to test and enrolled him in a bike camp for special needs children. It was truly a test to my mind-set; but after five days of literal blood, sweat and my tears, he learned to ride a bike. (I highly recommend this camp.) Not to say he was happy to accomplish this, but we were. We bought him a beautiful bike and forced him to practice for a while. Yet, we still had the question of his security and riding by himself. So we fell back to the good ol’ tag along. The poor child did not look comfortable by any means, with his knees up to his chest, but he didn’t complain and we kept on.

While on a mini vacation a few weeks ago, which is very bike friendly, I pleaded with Dan to ask a local bike shop what they could to modify the tag along. I know he felt it was another waste of time, but I wanted to try—this seemed like the place for us. We rode to the shop, with Ryan on the back and showed them our predicament. Perhaps bringing Ryan along and showing them his discomfort added to our persuasion. They quickly seemed confidant they could help us, so Dan returned later that morning. He arrived at our campsite victorious, he was truly humbled by the care and time this wonderful shop provided us. They had outfitted us with a taller seat and handlebars—exactly what we had asked other shops for over and over. Ryan hopped on his new and improved tag along and the smile that crept across his face was true bliss. His tag along was perfect–again.

Later that day, we rode to the bike shop, as asked by the staff, so they could see Ryan on the bike: another reason they became dear to my heart. Dan and I gushed too much over their handy work but they were gracious. Did they try extra hard to help us because they knew Ryan was autistic? It doesn’t really matter to me, but I think mainly they are just nice people and saw our extenuating circumstances, so: yes.  In any case, thank you, Ventura Bike Depot.

Sometimes it’s the small things that help people the most. It may not have seemed big to you all, but to us it’s monumental. There are few things our family can do together, willingly and happily, and you helped us get back to it.  We have a new lease on our biking adventures; where we feel safe with Ryan tucked behind, and he is happy to remain there for now.

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Siblings

I thought it fitting to acknowledge National Sibling Day during this Autism Awareness month.  My words may not do justice to how important my daughter, Jenna has been for, my son, Ryan.  Siblings can be the best built-in peer partners an autistic child can have–if the sibling is willing to participate.  Luckily, she has shown a keen interest in him since the day he was born, long before he was diagnosed.  To the point of (mostly his) annoyance, she has never left him alone.  I hear him scream her name no less than five times a day, and I know it’s because she’s teasing him.  God bless her for that.  Yes, it’s irritating, but she doesn’t treat him different and never has–even after she was old enough to know about his disorder.

I have been blessed with three siblings myself, and we naturally have different ways of communicating with each other.  Jenna and Ryan have only each other, and due to his language deficit, Jenna had to first relate to him by his actions.  In my upcoming book, Make a Wish for Me,  I tried to illustrate how early on Jenna was a wonderful ‘mini’ therapist and participated in Ryan’s daily sessions.  But, what I didn’t get to elaborate on is their interactions now.  Then, their relationship was still somewhat simple exchanges.  And she did a lot of “talking” for him as older siblings will do. However, I believe, she really did know how to interpret what he wanted or was trying to say.  I think due to his lack of speech, they found a way to mentally connect, not using words.  I know he did this with me, which is why I think that became their way of communicating.  This initial mental connection has stayed with them.

Now that Ryan has the amazing gift of speech, they have found movie scenes as their way of interacting.  If I had to guess I would say, that’s not Jenna’s first pick.  She probably would much rather do crafts or ride bikes with him.  But, as she learned long ago, in order to interact with Ryan, you mostly have to do what interests him.  So, movie scenes it is.  Again, the annoyance level for me is sometimes unbearable after hearing them act out the same scene for the fifth time.  But when I hear the sheer giggles of joy–from both of them, I can do nothing more than smile.  Smile deep from my soul and thank god they were given each other.

The complexity of their relationship isn’t easily defined, especially by me, because I’m only an observer.  But, what I see clearly is they adore each other.  I truly believe the one person Ryan would miss the most on earth is Jenna.  She is the first person he asks about every day; and if she’s away, he just isn’t himself with out her.  Same goes for Jenna–as she has told me many times unprompted, “Ryan is my best friend.” Although she may not say those words to him, she shows it.  And he knows.

So, today I honor my children as the best siblings in the world.   I thank them both for the love and attention they give each other. May they always be there for each other and never stop laughing.

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Don’t Judge a Book by it’s Cover

When I sat down to start writing my book (ahem…four years ago) I didn’t spend a lot of time thinking about the cover.  I think I was more worried about seeing my name.  And I’m sure any other writer has the same vain desire.  The first time I was published in a poetry collection in college, I couldn’t take my eyes of the “by LeeAndra Church” (maiden name).  And each article I wrote after that, the same thing.  I can’t say if it’s a writer’s desire only because that’s all I’ve ever wanted, perhaps everyone gets as much guilty pleasure seeing there name in print. So, as I was writing, I was almost imagining an old fashioned, leather bound book with the title and of course, my name in bold.

I’ve learned a lot about covers in the last few weeks of working with my publisher.  They actually let us have a big say in what we want and what we think, which is admirable.  So, once I started thinking about it-it became a little bit of an obsession.  I started looking at other books and realizing more than half the reason I pick a book up at a bookstore is the aesthetics of the cover. I don’t remember this always being the case in my lifetime, but most certainly now in the world of publishing I think it’s a reality.

One of the exercises the publisher asked me to do is look at other covers and tell them what I was drawn to.  From the looks of my cover, they nailed it.  But I have to say one thing, being the pain in in the ass I am,  I had a different vision in my head than what I told them I was drawn to.  I think I began imaging it in such a literal state; like it should have  more of direct meaning to the book.  I imagined a wish bone, or a wishing well or blowing out candles (I actually submitted a picture of Ryan looking at his candles as an option-but it was too “snapshot” looking).  So when the mock up came, I was in a stupor.  It’s not that I didn’t like it, I just had to change gears.  I kept closing the file and opening it again to get another look.  Each time I liked it more–to the point it now takes my breath away.

I guess what I’m getting at is an old pun, don’t judge a book by it’s cover.  Just let it draw you in-to pick it up and start reading; reserve the judgements until you’ve read enough to decide.  I think my cover will engage enough people to at least pick it up and give it a thumb through. What do you think?

 

MakeWish.indd

 

 

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Its happening…

“Look class, LeeAndra got an A+ on her report on the bumble bee!” My third grade teacher exclaimed.  The entire class unabashedly turned to me, as children will do.  I looked out the sea of blinking eyes and felt like I was on stage.  Like I had just received a great award.  In a way, I had.  The first thought that popped into my head was, “Wow, that was easy.  I should be a writer.” It was a flippant remark by an elementary child, but the simplicity of the thought stuck with me.  From then on, when asked what I wanted to be when I grew up, I would answer: a writer.

I kept that bumble report for many years as a reminder to keep going after what I wanted, not that writing was easy, but it was just that simple.  Follow your dreams.  Hone in on a talent or passion and keep crafting it.   Ellen DeGeneres said that if you keep at something long enough someone will either pay you do it or pay you not to do it.

I guess I’m finally grown up, because I can officially say, I’m a legitimate writer.   Last month, I signed my name on the dotted line and will officially have my words published as a real book.  The story you have all been following in these blog posts will be available to read in November.  (Now you might understand my prolonged absence from the blog–I am in heavy editing mode.  Deadlines are a bitch!)

I can’t thank all of you enough for following along, commenting and supporting me in telling this story.  I will keep update the progress of the publication as things happen.  But, be ready for November–and never give up on your dreams.

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This too is temporary

Most parents don’t want to dwell on their children’s deficits.  We want to focus on their strengths and celebrate their victories.  I believe this to be true whether our children are typical or unique.  But in the realm of autism or any special need, sometimes you have to put your cheer leading hat aside and truly acknowledge where your child’s weak points are.  It is a necessary evil if you are going to help them improve.  Being brutally honest is not my strong point, but one I have to turn to more than I like.   I was always taught to focus on the positive of every situation or person.  I strive for this daily and although I’m not perfect, I do believe it is one of my strong points.

To my own fault, I have to fight hard to see the negatives in Ryan or Jenna.  It’s like my positive blinders are made of Teflon. Like my heart won’t let me see them in anything but a glow of perfection.  Because they are perfect to me.  But, when a situation arises and I force myself to come face to face with a shortcoming, it hits me hard.  To admit to myself either one of them can’t do something or won’t be able to for a long time, literally breaks my heart.

I know I am not alone in these feelings.  I  need to remind myself of that, but there are moments in juggling the life of an autistic child, I feel desperately alone.  Even though Dan is an amazing partner, and I have a fantastic support system; it’s just my nature to take things so deeply.  To a dark place where hurt lives and makes me feel so heavy.  I try not to visit that place often, but sometimes I can’t avoid it.  Not when it comes to my kids.  Perhaps it’s because they were once physically part of me that they remain hard wired to my heart.

I will come out of it.  I will put my positive hat back on, and get my boxing gloves out.  But just for a day, I will allow my heart to be heavy and grieve a little for the things my sweet boy isn’t able to do…for now.    I know we will work to change these things.  We always find a way to bring him up, and he always finds a way to surprise us with what he can do.

I will never give up on either of my children and even when I have to face a blip on their map of life, they are still perfect to me.

As a wise man once told me as I was crying upon his departure, “This too is temporary”.

 

 

 

 

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The School Bus

 

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“Oh just let that baby take the bus. What is your issue with it?” My aunt’s voice echoes in my head. I had been giving her an update the week before and told her the school district had offered transportation to Ryan as part of the IEP.

What is my issue with it? Is it the stigma of being a special needs kid and going on the “short bus”? Ugh…did I really just call it that? I want to give myself 50 lashes for even thinking this awful thought.  What is wrong with me?  I should be more sensitive to those kind of sayings.  But, it was in my mind before I could stop it.  And if I’m being honest, those busses are very recognizable.  It is one more element I hate about singling him out as special needs.

Aside from my stupid ego, the other, bigger concern, is putting my child’s life in a stranger’s hands. It’s not like bus accidents don’t happen all the time…I’ll go with that…safety.  Yes, that is more the issue than the special needs part of taking the bus.  What a shithead I am…

I don’t think he would have any issue taking the bus. He is actually quite fascinated with them. Every day at preschool he asks to get on the parked buses. The classroom aides think it’s cute; they tell me frequently how much he likes the bus.  Ryan has no concept that he would be perceived as different if he took the short bus. So why am I worried?

When the district offered it, I didn’t say no right away.   But, I have to let them know this week. Maybe just for summer school…I can try it.

Sitting at my desk trying to plan Jenna and Ryan’s  summer I am debating all this–sometimes out loud–weather or not to utilize the school districts offer.  Mainly, it just seems odd, since we don’t need it.  I have fully functioning car and my work is flexible, so getting him there is not an issue.  I never have minded taking my kids to school, in fact, I feel a void in my day if I don’t get to see them off.  I just like knowing they arrived safely.  Okay, maybe it is the safety issue.

I guess I could just have the bus bring him home from summer school… 

Summer school is actually called “ESY” (Extended School year) for special needs children. Many kids need to keep attending school over the summer to help with continuity issues and some to make up academics they struggled with during the year.  The part I don’t like is the ESY only lasts about six weeks and it’s usually at one central school for the whole district—not necessarily the school the child attends; which happens to be the case for us.  So for me it is adding up to one big headache.

First, I have to make his social story.  However, I won’t know have access to his teacher until the first day.  So, technically he will already be there before I make the book.  I will have to take pictures of his new teacher, the school, the class, his speech pathologist and his Occupational therapist.  If I can even see them on the first day.  Then download the pictures, write the story, print it, fold it and begin reading it to him the second he gets home from his first day.  Just that part is overwhelming.  Then there is the element of the coordinating being home for the bus.  Obviously someone has to be there and they give a big window of time it will arrive.

I just can’t decide if it’s worth it, all because he shows interest in the bus.  He likes Thomas too, but would he actually ride on the train? I don’t know.  And I can’t go with him to “try” it.

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It’s hard to outdo someone else, sometimes it’s even harder to outdo yourself.  I battle each month how to thank a class of 5th graders.

In Ryan’s class, the school allows (and thank god they do) our aides to host a “recess club”.  This club is set up to ensure Ryan has a peer to hang out with at most (if not all) recess’ and lunches.  It is completely voluntary, and is always stressed that the children only fill in their name if they want to.

Part of being in the club is attending a monthly “meeting” where Ryan’s aide spends a few minutes devoted to any questions about playing with Ryan.  She may give them a small piece of advice like “don’t let him always choose the game” or “you can include him with your other friends too”.  When we first started the club in first grade, I would have been happy if five or six kids signed up for most of the days; but it has always been a huge majority, if not all, of the children in the class who sign up.  And so far, a play period has never been left empty.

So, back to me, out doing me.  When Ryan’s aide approached me about doing the recess club, she mentioned giving the participants small tokens of reinforcement for being part of it.  I was all over that.

In the beginning it was easy to find “oriental trading” type give aways: pencils, erasers, note pads, even the occasional homemade baked treat (brownies go over huge). But as the years have progressed and the children have matured, I’ve had to challenge myself to find something new and pertains to what Ryan likes.  Since I’ve run the gamut on school supplies and have repeated the chocolate treats, I now have to rack my brain harder.  There are few that stand out over the years: the fortune-cookie-shaped eraser with a hand made “fortune” inside that read “You are a good friend” was well received.  Last month the chocolate cake mini-loaf with a sticker that said “good friends deserve chocolate cake” was a huge hit.  Except for the end of the year pizza party, which is the coup de gras, I’m afraid I have reached a pinnacle.  This month’s treat is simple: A small glass jar (Dan is worried this might pose a problem) with a gummy pumpkin or witch filled with m & m’s (Ryan’s favorite) and little note that says ‘Happy Halloween’. If I must say so for myself, they are super cute (I was going to include a picture, but I think you can get the idea.).  But I feel I’m at a pinnacle…what will I do next…

What I haven’t extrapolated on is why I try to out do myself each month.  It is because, Ryan’s classmates add so much to his life.  If they could hear how he talks about each of them every day.  How he gets out his yearbook and talks to the faces on the pages and “shows” them his toys.  How some mornings he practically jumps out of the car so he can go see them.  If they knew how much he has them in his dreams–yes this is new for him to talk to me about a dream, but he does and almost always his friends are part of it.  Not only does he believe they are his friends, they actually are.  And thanks to years of “training” and learning, they know how to play with him and don’t get too frustrated when he doesn’t reciprocate something.  If it wasn’t for the fabulous work of Dr. Hunter and her aides, I believe his social skills would be very different.  He wouldn’t really care about having friends.  But the recess club has taught him that when it’s time to play, there is someone there for him.

That’s why I believe they need to be rewarded.  I don’t believe for a second these tokens entice them to play with him, I think they feel they are a nice perk.  These young girls and boys are true, genuine friends to him and for that I am grateful.  Indebted to them in ways my words can’t express.  So, how next do I out do what I’ve done before to show these wonderful little people the light they have brought to Ryan’s life?  That is next month’s battle…for now I can’t wait to hear what they think of this month’s treat.

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The Benefit

This a new section I’m adding to the story…it’s only part of it…wondering if I should put it in or not…comments??

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Our first, “Autism Awareness” month was coming upon us. Ryan had been in therapy for almost 10 months and changed remarkably. We felt so blessed to witness this transformation in our boy and felt a sense of obligation to do something to show our support of this disorder and the month set aside for it. I felt compelled to do what my mother always taught me: give back. I didn’t want to just write a check and send it off. I want to have a “hands-on” experience and give myself another outlet to reach out to our community. So, we decided a small benefit to raise money would probably be the best.

Plopped down in our new “lounge Dan I started brainstorming on how to accomplish a benefit.  I’d never run one on my own.

First: where would the proceeds go? I had asked Dr. Hunter where she thought donations best be spent and she suggested a research facility in Northern California dedicated solely to studying the brain.  I showed Dan the website and he agreed. What better way to make a difference than to find a way to stop the disorder?

We  sat for hours and threw out locations, themes, ideas, and people to invite. How would we get the word out? How would we get items for the raffle? What kind of donations? We decided old fashioned word of mouth was going to be our best bet.

“I’ll call the office tomorrow and see if they will let me have the benefit there.” I told Dan as I sat with my clipboard and pages of notes. “I don’t think it will be a problem.” And we called it a night.

How do you sum up a benefit in one page when there is so much to tell?

After many drafts I came up with a one page flyer.  Ryan became a central theme–because after all, that’s what this was about.  Plus, I felt I had to make it real, about a real person: not just a cause that no one could relate to.  Seeing my sweet boy and reading about him being afflicted with this disorder, had to turn some heads…I hoped.   I found a great picture of him and fired off numerous copies.

I wasn’t nervous to get out and pound on doors. It’s funny how when you truly believe in something how easy it is to ask for help. My plan was to start at home and hit the whole shopping center.

I breezed into our local coffee house and asked if I could hang up a flyer for the benefit. I happen to get the manager and she looked at the flyer and then at me tenderly.

“Can we make a donation to the event? Like a coffee basket?” she asked.

“Uh…yes…wow, yes, of course.” I said the shock all over my face.

She smiled back. “We can also provide coffee for the night of the event if you like?”

If I like? What?… I stood there trying not to let the tears fall from my welling eyes.

“I don’t know what to say…I was just hoping to hang up the flyer…you have far surpassed my expectations.” And then it was over, tears coming down. I barely mumbled out “Thank You.”

She patted my hand sweetly and said, “Let me get an order form and we’ll get this all written up.”

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