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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.


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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The School Bus



“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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I’ve been absent from this blog for awhile…funny seems to coincide with summer…strange.

Anyway, after a lengthy meeting (that I asked for) yesterday, I walked away and kept repeating a phrase in my head.

“I have a writing partner. I have a writing partner.”

This may not be something most people would get excited about, but it’s actually quite thrilling for the want-to-be writer I am.

I’ve noticed there are many things we have partners for: life partners (typically a spouse, but could be someone you live with for a long time), business partners, work-out partners, partner in crime (usually a friend you like to hang with and most likely get into trouble with), actual partner in crime (if you a police officer) and a sparring partner (if you are a professional boxer).  There are more, I am certain and please comment if you can think of any other clever types of partners.

But why is a writing partner so important? To me, it’s finally taking my book-in-progress to the next level and committing myself to a twice a month meeting with a responsible, highly intelligent, gifted writer–who also happens to be my long-time friend. (I actually met my life partner because of this writing partner.)  I’m hoping through her wisdom and guidance I will finally finish editing and re-editing this book you have all been reading about.  In case you are wondering, she’s not just doing this out of the kindness of her heart (although, I believe she would) I am going to attempt to help her with a project she has underway.  Hence the whole “partner” concept in play.

I hope she is okay with me putting this out there…I just had to put it down in words and get it out of my head.  I am so grateful to her for accepting my invitation.

Now it’s real. Now you all know…stay tuned.

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Traumatic memories

Post traumatic stress syndrome (PTSD) develops after a person is exposed to one or more distressing events like injury, assault, or the threat of death.  It’s often seen in veterans after returning from war.  I feel it an injustice trying to compare what I’ve been through with Ryan with any of the horrors my dad experienced in the war.  But there are times I reflect on Ryan’s days in public school and feel my emotions stir up quickly.  My pulse races, and I begin to shake with anger at the hardships he endured.  I relive those moments as if they have just happened, much like a person with PTSD.

What separates me, is the ability to stop those memories quickly.  Mainly from the pure satisfaction of the choices we made for him; the glorious exhale of relief that I no longer worry about him after dropping him at school.  I don’t fret over how he will behave.  I am not concerned about an outburst that could send him over the edge.  I don’t agonize over his safety—will he run off campus again?  All the emotions I literally lost sleep over, are no longer my concern.  Because he is in capable hands.  I cannot speak for the school district, as to why they would not allow our aides into the school.  As much as it makes me scratch my head with wonder, I refocus my energy and bask in the glow of my boy who is now happy to go to school.  A boy who asks why there isn’t school on a holiday.  A boy who gets ready on his own without prompts.  Who would have guessed that four years ago he would one day enjoy school like he does?

When he was in first grade (for the first time) I was laying out items for school after the long Thanksgiving break.  On weekends and holidays, I put the kid’s backpacks in the hall closet so we don’t trip over them.  As I brought them out to put in the kitchen, my silent child (this was at a time when he didn’t show a lot of emotion nor did he speak very much) stared wide eyed at his back pack, as if it was on fire, and burst into tears.  He began to say loudly, “No school, Mommy, back pack back in closet. Back pack in closet!”

I stared at him in pure shock.  I had no idea he associated the back packs in the closet with no school.  I didn’t realize he even paid attention.  Apparently that was a big visual sign to him.  I pulled him to me and wrapped him in my arms as he cried, over and over, “No school, Mommy.”   Soon, I was in tears with him.

What was I doing to him sending him there?

How can I send him back after he begged not to go?

PTSD may be too strong a word for my painful recollections, but  memories of your child begging not to go to school when he could barely ask for milk,  evoke a physical and emotional response as fresh as the minute it happened.

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The Special Hat

When your child has been giving the title “special needs” you quickly learn  the word “special” by itself isn’t  a compliment.  Even though we are forced to use it in conjunction with “needs” to define our child at times, I sort of hate the word by itself.  Kind of like in the movie “Elf” when Buddy realizes he’s not good at ‘elf-things’ and his elf supervisor tells him he’s not a cotton headed ninny muggings, He’s just ‘special’.  The frown on Buddy’s face is how I feel when I hear that word too.

An annual carnival near our house has a “free day” for the special needs kids in the area.  Ryan’s preschool teacher gave me the flyer, and I thought it would be fun to take him.  The second we pulled on to the grounds, he started whining. This was before he could completely talk again, so I learned to interpret the level of whining.  This wasn’t a code blue, but he was agitated.   I was afraid he might put up a fight to go in.  Luckily, I brought our kid wagon, thinking he would be more willing to go if he was sitting versus walking.  He let me put him in and my thoughts were buoyed that this might be a good time.

As we approached the gate, young teenagers were enthusiastically handing something out.  They put it in my hands and I saw it was a hat.  Not the best looking hat, but ‘what the heck?’ I thought.  I turned it around to see that it said in big, white, curvy letters: “I’m Special.”


I stared at it and then up at the kids, who I now saw were all wearing the same hat.  I must have looked like an idiot staring, mouth open at them, but I truly was in awe.  Obviously they thought it was cute, because they were all wearing one.  Some had it sideways, some backwards; some kept it flat billed, as teenagers do.  I handed it back and said a little bit too roughly, “No thanks.” The kid looked at me puzzled and actually said: “No lady, its okay, its free for the special kids.”

The special kids…how very offensive this felt.  As if they were personally pointing at each and every child in a mocking way. And in case your child doesn’t have an outwardly obvious disorder, like autism, here’s a hat to make sure everyone knows!

I know it wasn’t their fault that some thoughtless genius had a great idea to make an in insensitive hat for all the kids with issues. But, I was so overwhelmed with emotions of resentment and anger; I literally broke out in red blotches.  I stormed away.  I didn’t have the words to explain to this young person how completely inconsiderate the hat was.

I tried to imagine the board meeting where a ‘chairperson’ would have suggested making this hat.  I had been in plenty of planning meetings like that.  What amazed me was that everyone on the fair committee would’ve had to agree on this hat.  Did no one at that meeting have any association with special needs kids?  Did they really think this was a good thing? Did no one think it would offend me as much as it did?

My mood threatened to spoil the day, but watching Ryan at the petting zoo made it easy to brush away temporarily.  I tried not to notice all the handicapped kids with the offensive hats on.  I didn’t look at the other parents, aides and teachers and wonder why they let their kids wear such blasphemy.

Maybe I’m too sensitive, I thought.

When we got in the car later, one of the hats was in the bottom of the wagon.  I guessed one of the teens handed it to Ryan, because I made sure they got mine back.   I took it inside to show Dan and talk to him about the inhumanity of this hat.

I stared at the happy shaped words  and in my mind I saw Buddy’s the Elf’s face again.  I frowned too at the irony of that damn word.

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Babysitters and the Universe

Allowing someone outside your family to care for your children, is frightening aspect for most parents. Finding the right person is whole other ball of wax entirely.  I was put through the ringer in my quest for the right person for Ryan and Jenna.  I say “I”, because it didn’t take long to realize when it was time to look for a baby sitter the task was left up to me.   Actually, I think Dan thought they magically appeared, because when I mentioned needing someone, he dryly remarked, “well, just handle it”.  As if I could wiggle my nose and conjure them up.  As if it was that easy to recruit, screen and accept someone to care for your most precious assets on earth.

Once Ryan started home therapy, I needed someone to be there so I could schedule time to work.  Luckily, my mother in law offered one day a week to stay with him.  I was grateful for that one day.  So that left me three as I could easily spend one day a week working from home.  But three days is still kind of daunting.

I first utilized the “respite” babysitter and quickly realized it wasn’t going to work. (Respite is a service the county offers children with special needs for childcare; you get a monthly allowance of hours for “relief” i.e. time to do errands, work, or even go on a date with your spouse.) I used them because their people had experience with special needs kids.  No disrespect to this respite caregiver, she was a lovely lady, but she had her plate full with her own family, and talked to me a lot about all that was going on.  I felt like I was taking her away from them.  I had my own mommy guilt and couldn’t handle hers too.

I went on the next candidate they recommended.  She coincidentally was labeled special needs herself, due to an accident at birth.  I thought she would be good in a sense that maybe she could relate to him and perhaps him to her, on a different level. But I soon saw she wasn’t mature enough to handle my kids; As she demonstrated to me by picking Ryan up by his arms and literally throwing him five feet up in the air and on to the couch as he screamed bloody murder.  She said he liked being thrown.  The terror in his face told me otherwise.  Ugh. Next.

So the search began, on my own.  One of the brokers at my office mentioned to me finding her perfect assistant.  She had written down exactly what she was looking for and “put it out to the universe”.  The next week she found that perfect person, who wasn’t even looking for a job.  She assured me if you are specific, the universe will bring it to you.

What could it hurt, I thought? It basically just a thorough job description for my perfect babysitter.  After the first two sitters, I had plenty of ideas of what I didn’t want.  So, I spent an hour or so writing out exactly what I  was seeking from her, yes, I specifically wrote down a ‘female’.  I decided no detail was too small.  Handing over my ‘ideal’ and very long description to Dan, I waited for him to be impressed.  He shrugged and looked blankly at me.  I know he was probably thinking something smug like I should have done that from the start.  Men. 

Now what? Was the universe going to deliver her to my door?  How long did I have to wait?

I did a sort of prayer/mini-meditation with my list of traits; the only way I knew how to inform the universe.  Just in case it didn’t actually read my list. And then I got on the phone.  I felt the more I “put it out there” with real people, the better chance I had at an actual answer.  After a few calls, I hit the jackpot.  One of the teachers at Ryan’s former preschool was leaving the school to go to a local college.  I knew who she was and I knew she had good ju-ju about her.  But, my friend told me, she already had a job lined up.  Crap.  I decided to call her anyway, maybe she had a friend or something.

After I told her our situation, she said she wasn’t too hot on the commute she was going to have with this other family, and being that we lived right up the street from her she wanted to come talk to us.  Just to see.  I don’t think I have to explain how we won her over with our wit and charm.  It’s pretty obvious-right? I mean, it is us.

Looking back at the time “Shelly” was with us, I realized a few things.  First how hard it was to find a good babysitter, so be specific and just ask.  Second, it’s even harder keeping one around, we purely got lucky to have her for over four years.  Lastly, the best part about having  a great sitter is the peace of mind they give you.  They free up your mind to do work, errands, or go on a date, if you truly feel like your kids are in good hands.  Hence the real definition of respite to me.

So, the universe delivered.

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I wrote this on Thursday, but as a wicked stomach flu attacked I am just now able to post. So for clarification when I say ‘yesterday’ I mean Wednesday.  And since I haven’t said it in awhile…thanks to all those still sharing and reading.  We are slowly getting more readers.


Women are typically drawn to other women for one outstanding reason: support.  I’m not saying that men aren’t supportive, but on the average, most men are “fixers” and women are “supporters”.  When something happens in a woman’s life, one of her first calls will be to a close female—weather related or not. Because women listen, and usually are sympathetic to each other.  Most female species do not try to fix it unless the other woman asks.

When Ryan was diagnosed and after I broke the news to my sisters, my closest female supporters, I felt lost.  I knew they would listen and sustain me, but I needed something more: understanding.  At the time, I felt it just simply wasn’t something they could provide because they didn’t have a child with autism—they couldn’t understand.  I sought out a support group that didn’t add up to the pieces I was looking for.  This was so disappointing as I truly felt a support group would pull all the ends together for me.  And make me feel less like a drowning victim. But I gave up on looking and just tried to mull about on my own.  As time went by, I slowly, started to find comfort in talking to Dr. Hunter’s staff (they were in my house every day, so I had lots of access).   They were able to make me feel like what was happening or what he was doing was part of the process and at some point talking to them became enough. I may not have had fellow mothers to talk to, but it filled a void.

Now that I’ve said all that I’m going to retract a bit.  As I was reminded yesterday, there is still nothing like sharing with a fellow ‘aussie’ mother the similarities in your life.  There is a sensation of being held in tender hands when you talk about your child and the other person wells up with tears.  Recognition i.e. understanding is the underlining difference in talking to a professional and a mother.  As Jenna McCarthy wrote in her book about her autistic son, she believes there is a special place in heaven for mothers of autistic children.  I believe it also goes for so many other mothers, but as I happen to be the mother of an autistic child and considering the amazing mother I met with yesterday, I certainly hope there is a roped off room with a VIP entrance for us.  I wish for a place that all the heartache we suffered on earth will be exchanged with cocktails, music and dancing.  And laughing.  Lots of laughing.

For now, I raise my pen (or later, wine) to all the mothers of special needs kids battling today on earth for their babies.  I especially want my fellow warrior mom to know, and she knows who she is, that she will have front row VIP parking, and table service for all she’s had to endure.  My heart is so full for her struggles, and yet she keeps going.  What else is she to do? She’s a mom.

So, now that I’m nearly beside myself in tears, I will finally get to my point.  No matter what your struggles in life: find support, find listeners, find understanding.  It truly is what gets us through.

(End note: I recently was introduced to a wonderful group of women who meet for support.  I have only been able to join them a few times, but I am thrilled to know I finally found a group.  They know who they are and I look forward to more sharing moments in the future.)


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“Can you call your brother’s and ask them to send pictures of everyone?” I ask Dan, looking down at my long list of items I have to take care of.

“Like family pictures?” He says distractedly while reading the newspaper.

I sigh a big sigh and shoot daggers at him with my eyes.  I wait un-patiently for him to get my message and begin to tap my pen loudly on the table.  He doesn’t budge.

“Hello? Are you new to this? You know I need face shots of everyone, so I can make the pictures of each person. And I mean everyone–all the nieces and nephews,  Uncle Ed, Aunt Bev and whoever else your brother has invited.” I say in most annoyed tone.

“Oh…yeah, yeah, right. I’ll let them know.” He says still not looking away from the paper.

“I need them like, yesterday, Dan.” I snap.

“I know, Lee.” He looks at me like he’s eaten pickle juice.  He puts the emphasis on my name so I know he’s annoyed too as if I couldn’t tell by his facial expression.

I look back down at my list, too busy to continue my annoyance with him.  Just making the PECS of all the people going is a mountainous job.   Copying and pasting, sizing all the pictures to one page, printing it out, cutting, then laminating and cutting again.  Then there’s the Velcro…I hate Velcro.  After the first few times, the scissors get so sticky you can barely get them to open.  So, you have to stop and use nail polish remover to get the gook off.   And considering I will need to make at least twelve of them, it will take at least an hour if not more. I need those pictures soon…

We have been planning this vacation for almost a year and now it is here.  Dan’s family reunion to the Outter Banks of North Carolina.  I am so excited for the trip but am so anxious for just getting there.  Will we really be able to take Ryan on a plane? He’s been on one before, but it’s been a few years.  He was practically a baby then and it didn’t seem to bother him.  It’s as if he has awoke from a ‘sleeping beauty’ nap and now everything upsets him.  Like his skin is on fire all the time.

“Brie is packing the therapy items, but I need to make sure we have some things for the plane.” I say out loud looking at my list.  How the heck am I going to get all this done before we leave? I sigh again. Thank God Brie  is going with us…we could not plan this trip without her.  He still needs therapy twice a day and there would be no way to take him out of that routine..

“Hey–” Dan reaches over and takes my hand to show me he’s not irritated anymore. “–Keep in mind how excited you are for this trip.  You’ve been talking about it for months. And, you were the one who was so gung ho to go…remember?” He raises his eyebrows.

“I know…I am excited.  It will be great, I’m just worried…about the flight, the house, the pool, cuz neither of them can swim, and …well…everything.” I say in exasperation.

I am actually thrilled to go; we have been holed up at home for so long, the thought of getting away is exhilarating.  Just thinking about being together with his brother’s and their families is exciting too.  We don’t see much of them as they live on the east coast, but we did see them a lot when we lived in Connecticut for a few years.  We had such great times hanging out with them I know it will be a laugh fest.  I am just not sure how Ryan will do.  The unknown of how he will act or react to them all of them, and just all the change is enough to make me on edge.






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The Bar

When you have an official reason as to why your child doesn’t like to go places, you begin to reevaluate your entire life.  And then decide it’s just plain easier to spend your down-time at home.  I decided if we were going to be home, I wanted to make our living spaces as “far away” looking as possible.  As if we were on vacation, but still at home.  Starting with our bedroom.  It was time to make it feel like a sanctuary, so when we crossed the threshold we could feel like we entered a hotel, far away from the ups and downs of living with an unpredictable child.

On our first real trip to actually purchase and not just window shop,  I found the perfect bedroom set.  I was in bliss just looking at that four-poster beauty. It was even called “The Hemingway Collection” not only one of my favorite authors, but it looked like it belonged in a hotel.  Perfect. Dan needed to get up here.  But he was downstairs tirelessly walking Ryan in the stroller so he would stay content.  I went to find him to trade.  He had a smirk on his face.  

“What?” I said.

“You have to take a look at this.” He eyes lit up.

“No, I’ve found our bed, this is it, you have to go see it.” I argued.

“It’s not a bed.  It’s a bar.” He was nodding his head and smiling like an idiot.

“A bar. I don’t want to sleep on a bar.” I said dryly.

“Just go over there and look.  It would be awesome in the living room.” He smiled again.  I know he has always wanted an entertaining area, but this was not my priority.   A bar in our living room conjured up all kinds of images in my mind.  What I saw was made of tacky bamboo and had Gilligan standing behind it with his goofy white hat shaking coconuts together.  It just didn’t go with my formal living room look.  I could see he wasn’t budging, especially when he said:

“I’m not looking at that bed until you see this.”

I sighed in defeat and heard Ryan whine from the stroller so I knew I had to work fast.

“Fine.” I turned around and began walking in the direction he pointed.  Searching for the tropical section, I stumbled upon a piece of furniture that looked like it belonged in a library or exclusive golf club.  It was tall,solid, rounded and dark and, well, beautiful.  Yes, I know I am describing a bar, but it was not your typical bar.   It was a focal point…  Crap. He’s right, but we can’t afford it.  I walked around the back to see the lovely marble counter and wine rack and cabinets and built-in outlets and I wanted to cry.  Damn it! Who would think a bar could evoke this kind of emotion out of me? I mean I have patronized a few in my day, but suddenly I saw it…Our house, the hangout…standing behind it taking orders….passing out coasters. Ughh!

Well, we decided to stay home whenever possible, what would be more perfect than a focal point that happens to hold alcohol and provide seating?  I stared at the front of the price tag until I had the courage to turn it over.  Would I be willing to sacrifice our “hotelesque” bedroom for a bar? I turned it over. That’s it? The price was thousands less than I imagined.  

I turned back to see him standing there, gloating.  I had to give it to him, when you are right, you are right.  But I had to play this smart, I had to make sure he still intended to get our bedroom set.


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“We want to thank all of you for coming today to such a…amazing day for Ryan and for us.” I say to the crowd through tears in my eyes, partly from the glare of the sun and partly from emotion.  This day has been in the works for a year and a half.  I have invested many hours practicing taking the “Jesus bread”, that is what we called it for him to make sure he knew it was different.  I was getting a little worried that having it a home will lessen the idea of the bread being  special but that thought had to be shooed away quickly.  My job was to make him hold it and eat it—on cue.

“It means so much to us that you would come today and share in it with us…with Ryan.  We are so proud of him…” Now I’m crying. Dan rescues me.  He puts his arm around me to either steady me or shut me up.

“Yes, thank you all for going to his communion and for coming to this celebration.” He pauses for a second, and I am scared he will break down too. But he clears his throat and goes on.  Let’s raise a glass to Ryan.” He lifts his up and the group echoes with “cheers” and “here, here’s”.

I scan the whole party area so I can put it to my memory: the smiling and the teary faces with the sunlight radiating halos behind them, laughter from the kids in the pool behind me, the warm breeze all mix in with the warmth I feel inside.  Keep it together I coax myself.

Taking in a deep breath I hug Dan and walk around to thank everyone.  The first person I arrive at is Brie.  Aside from family, she has known Ryan the longest or at least known his journey.  She has literally been with us and him since day one.  It takes all I have not to grab hold of her and sob.  Plus she is pregnant and I can see she is teetering on a breakdown as well.

“Thank you for coming.” I say and resist the bear hug and go with a simple gentle pull-in followed with a pat. “We did it.” I say more to myself.

“Yes! You did, oh my gosh, he did awesome.” She is practically gushing.  And I love it.  I love that she and all his therapists take such pride in his accomplishments.  Dr. Hunter’s group have never wavered in their support of him, even when he was having a rough day or rough spell.

“All the kids did great.  I’m so proud of all of them.  I wasn’t sure how it would go but they all did great.” I feel myself getting choked up again.  I turn and see Ryan’s other two therapist/aides walk up.  They too look like they have had a fresh cry.

“Hey girls, thanks for coming.  It really means a lot to us.” I say as I pull them each in for a quick embrace.  I can’t take all the credit for him eating the bread on cue, it was Leigh and Toni who helped me at the summer home sessions.  We would practice it at least once a day.  So I know they have a special place of pride that he “performed” at the communion.

“And thanks to you guys, he was used to the Jesus bread and took it with out a problem.” I say smiling.

“Jesus bread.  That is so great you named it that.” Brie says smiling.  I knew we had to give it a special name that meant something and I do believe it did because Ms. Sally started calling it that and so did the rest of the kids in class.

“I love that he took it and said, ‘where’s my cake’?” Toni laughs a hearty laugh.  It was a comic moment for our family.  We had promised him his cake as extra insurance if he ate the bread.


Filed under Installations