Tag Archives: autism

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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Unique Issues

I’ve spent this past week immersed in retail sales. Not for a major store, but running a middle school book fair.  And “running” is a good way of putting it.  I hustled from place to place all week.  All in the name of books.  My weakness.  How could I not “run” the book fair?  Since books have run me for a long time now.  Maybe I’m getting older or just more reflective, because I have chaired this committee in past years, but this year I learned something I hadn’t keyed into before.

Aside from the “unwashed public” of teenagers and a few parents, I spent the majority of the time in the company of other moms chatting and sharing. And I realized something: each of us and our children have some type of special need.  And not ‘special’ in the terms I have grown accustomed to in the “disabled” world.  All of us have difficulties, failures, weaknesses and pain that should be attended to in a unique way.

I have written in past blogs about the words “special needs” and how much I loathe them for the negative connotation it brings out in my mind; well really for the plain fact Ryan has that label. However, I ‘m hoping my experience this week will allow me to stop hating that definition (as much) going forward.  These moms reminded me that we all do whatever it takes for our children and family.  Sacrifices: financial and emotional and all that we do as ‘mom’ to keep our families propelled forward and happy.

I heard stories from the mom who has to worry about her aging mom, or the mom who has to deal with her son’s chronic lung issues (and a cancer survivor herself), or the mom who lost her son, or witnessing the mom of a special needs child. (Who handled her child so differently than me, but that is another topic.) Then I heard about the “typical” kids who too have struggles of their own like Dyslexia, and ADD.  Or even as simple as kids who are poor planners just suffer from plain ol’ forgetfulness.  Every mom I spoke to is juggling and spinning plates, just like me.  We all are fighting different types of battles to get to the same end: making sure everyone has their needs met.

So, I’m starting with me and going to change the perception of what ‘special needs’ really means; I will try to recognize that all of us and our kids have some issue that we need to handle in a distinctive manner.  Then, maybe I could get society to not think of Ryan as singled out with his “special needs” but thinking he has his own “unique issues”; just like everybody else. That way my “special needs” guy isn’t that special after all.  And I like that. A lot.

 

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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.”

Seriously? 

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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Thoughts for the day…today is “The Magic Pill”

A good friend mentioned to me today, that she misses my posts.  (If you haven’t noticed, I am in a holding pattern for posting any more chapters for the book.)  After I took my bow of flattery, I wondered if not posting would affect the other readers on this blog.  She convinced me that it would, so you can blame her for what I plan to do next.  Because quite honestly, I miss posting.  I miss telling stories about my family and the amazing journey we have been on.   I miss reactions and feedback to some funny and some heartbreaking episodes in the book.  So, as I am currently editing and adding sections to the book, I will continue to post even if it is out of order of the story or those posts may not make it in the book.  I will continue to put messages out there that I hope speak to you. Here goes the first “thoughts for the day”.  (Don’t worry, I won’t call it’ thoughts for the day’, that sounds too much like a daily affirmation calendar, I will come up with a witty title.) So make today’s: “The Magic Pill”.

Ryan’s 1st grade teacher, gave me a book called “Rules”.  The book is about a teenager girl who has an autistic brother.  “Ms. Abrams”, the lovely lady who took such an interest in Ryan, thought it fitting for Jenna to read the book also.  Jenna was in fifth grade at the time and started reading the book first and quickly had a question for me.

“Mom, in the book, the girl wishes for a magic pill to take away her brother’s autism…do you wish we could give Ryan a pill like that?” She asked me seriously.

I had to take long breath in and find a suitable answer.  If I’m being honest, the immediate answer is Yes! Of course! What mother wouldn’t want her baby to be “normal” again?  But as I quickly reflected on Ryan and all that he had been through and all that I had grown to appreciate about him, from learning to speak to seeing his crooked smile more often, I knew my answer.

“No, Jenna, I would not want a pill to take away his autism.” I looked at her to make my point.  She had a surprised look at my answer.  I spoke slowly so she could really hear what I was about to say, and to make sure I said it right.

“This is the way Ryan is, and without his autism, I don’t know who he would be…I wouldn’t’ recognize him…I like him the way he is.  He’s just Ryan.” I crossed my arms as a final statement that I meant it.

She sunk into her chair, as if my answer were too heavy for her.

“Oh.” was all she could reply.

I waited a few beats to see if she had anything more to add.  I could see her eyebrows knitted together as she thought.  It didn’t take her too long and that only proves the amazing kid that she is.

“Me too, Mom, I like Ry the way he is.” She smiled sweetly and I knew she meant it too.

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#56

“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.

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#55

*

Watching their hair blow in the wind and their small bodies bounce with the waves, I stare at them instead of the beautiful desert mountains surrounding the lake.  I am caught up in emotion watching Ryan sit close to his best friend, William at the front of the boat.  There has never been a different answer to the question, “who is your best friend?”  Since he could answer it, it was William.  They met in pre-school and quickly showed interest in each other.  I have learned the life lesson that you can count real friends on one hand, but for someone who has trouble with social skills, even one friend is an oasis in the desert.  So, I clung like a life preserver to William and his mom, and did all I could to foster Ryan’s first and only friend.

William doesn’t suffer from autism; he has a chromosomal issue that is very rare and has caused him some developmental delays.  I honestly don’t see the delays, and I think he is the cutest thing I have ever seen, next to my own.  William is gregarious and silly and outrageously funny.  When I met his mom, Jess,  I decided instantly we were going to be friends.

Jess, and Rich have invited us to their lake house for a few days.  We have spent many evenings at their house, poolside, celebrating the boys respective birthdays or just family barbeques.  It’s tough to meet another couple and like both of them, plus meet a family who can handle Ryan’s issues—even welcome him.  And even though they don’t have the same set of issues, being under the umbrella of a family with a special needs child is comforting.   So we happily accepted the invite.

“Can I jump in, Dad?” William asks Rich as he slows down the boat.

“Sure!” Rich says with enthusiasm.  Jenna and William’s older brother, Tyler, quickly jump up to the side of the boat and leap in the gleaming water.

“Come on Ryan.” Williams turns to Ryan, who is standing back looking cautiously at the water.

“It’s okay. Watch me.” William says and leaps off the side.  Ryan watches as William comes up and laughs happily.

“Go on bud, jump in.” I say to him.  He hesitates for another second and then climbs up to the seat and bounds off.   His head doesn’t go under as he lands in the water, keeping his hair dry.

“Hey! How did you do that?” Tyler asks in amazement.  Ryan doesn’t answer him, he is swimming after William with a huge smile on his face.

“Mom, did you see that?” Tyler yells from the water.

“Yes! Wasn’t that cool? Ryan, that was awesome!” Jess says smiling.  She turns to me, “how did he do that?”

“He always does that.  I don’t know how…” I turn to watch them playing. I feel a swell of pride at something that Ryan can do that the others can’t.  “His swim coach said that is a life-saving technique she learned, to keep your eye on your victim.  It’s supposed to be really hard to do.”  I am smiling so hard, the back of my head starts to hurt.

“I think he is kicking his feet before he hits the water.” I trail off my thought as I realize I should stop gushing about Ryan’s silly “ trick”,  but the look in Jess’ eyes reminds me she knows how to appreciate all the things our kids can do.

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#54

“I don’t know how we are going to make it through the actual day without totally losing it.” My voice cracks as I turn to Lusia, one of the other moms in our CCD Class.  I am welling up with tears but fighting the full break down.  She nods and I can see she tears in her eyes, I think she is trying not to cry as well.

“Okay boys and girls, come sit on the floor.” Ms. Sally says loudly over the ruckus.  Ryan and the other six children are running amuck in the classroom.  This is usually the way the Special Ed CCD class starts, a game of chase around the room.  Ryan loves this part the best.

These kids have been together for over a year and actually like each other.  As much as Ryan usually puts a verbal barrage not to come, once he’s here he will join in for most of the class.  Ms. Sally has done such a great job with this class.  Each week, I am always surprised what she pulls off.

When she first brought us all together and told us her plan, I remember being cautiously optimistic at what seemed like a truly ambitious plan:

“We will meet every other week, and continue through the summer. It’s not the usual way of CCD but I think it’s important they have continuity and plus we have more ground to cover. Everyone okay with that?” She looks at each of us crammed around the table.

“So, they are…allowed…to take the communion?”  I asked and immediately felt bad for sounding like someone who did not understand what it’s like to have a child with special needs.  In my meager defense, I assumed Ryan would be much older by the time he was able to understand how sacred receiving the bread is.  No one seemed bothered by my question as I look around a little red-faced.   A few are nodding and looking intently at Ms. Sally for an answer.

“The Church’s stance is as long as they are able to understand the bread is not regular food, they can receive Holy Communion.  So when we feel they are able to understand that we can make a decision when the service will be.” She looks around us all again. “Sound good?”

There is a cacophony of nods and happy sounding “yes’” in agreement.  I am nodding like a bobble head.  I truly did not believe this would happen.

“Ryan, Ms. Sue said to sit down.” I say as I walk towards him.  He is running ahead of the children with a huge smile on his face.  I hate to break it up, but we have let them get a little over stimulated.  “Let’s go, stop running and sit down.” Miraculously a few children listen and come sit in front of her wheely chair.  This takes away Ryan’s fun of being the leader, so he reluctantly follows.

“Okay let’s start with the sign of the cross.” Ms. Sally says after they all are seated.

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#53

*

“Horse! Horse! Wook , Mommy, Horse!” Ryan yells from the back seat. His face pushed up close to the window…hands spread wide.  We pass a few stalls of horses on the long drive.  I’m thrilled he’s excited because it’s not often he gets this passionate about something.  But sometimes even with the picture schedule; I don’t think he really gets what I tell (and show) him we will be doing.  I made a new piece for his schedule with picture of him on a horse and next to it the words: “ride a horse”.   Per Dr. Hunter’s group, I now make his schedule with pictures and words, so when he gets better at reading we can take off the pictures.  I love the idea of him actually reading a schedule.  I am a calendar freak, always have been, so I appreciate making his daily schedule.  I have to do it for myself.  And I know how much it keeps him organized and knowing what to expect.

“Yes, bud, I know.  You are going to ride a horse today.” I say for the fourth of fifth time today, as I pull in to the dirt parking lot.  I think we are still a way from just words on his schedule or words to remind him.  No mater, he’s happy to be here right now and I am too.

This isn’t just horse lessons, its ‘therapeutic riding’.  I thought we should try it as he loves horses and maybe we can find something he can be involved in.  Therapeutic riding isn’t a new concept, and I had looked into when he was first diagnosed, but most of the places weren’t close by.  When I was looking to have a horse riding birthday party a few months ago for Ryan, the Riding  House Therapy Group came up in my internet search.  They didn’t do parties, but I liked that they were nearby.  When we saw how much he enjoyed his birthday, I decided to give it a try.   I liked that they served all disabilities as well as autism.

He opens his door and starts to jump out before I can turn the engine off.

“Hold on Ry, you have to wait for me.” I practically scream.  I quickly pull the keys out and swing wide my door to block him.  I grab his arm and then reach in for my purse as he is struggling to get away from me.  He is straining his neck around the door to see the riding ring with a horse, rider and three assistants.  Wow three people to one rider.  That seemed like a lot, but I can see the rider has a physical handicap.  I’m pretty sure, it’s for safety.

I grab his hand and walk down the gravel way to the small area with picnic tables and cabinets.  We are spotted by a lady in a straw hat.  She smiles broadly at us.

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#52

“Like what you see?” Ms. Abrahms asks from the doorway of her classroom.

I don’t know how long she’s been standing there, but I know I have a goofy grin on my face that I know she could see even in profile. I jump a little at her the sound of her voice and answer enthusiastically.

“Yes! Yes, I do.”

Ms. Abrahms has proven to be not just an outstanding teacher, but an amazing person.   I heard through the rumor mill, she actually asked to be his teacher when the principal told the staff he was coming aboard.  She later told me she has a friend who’s son is autistic.  And she really wanted to learn about autism.  Sometimes “fate” doesn’t explain when things like that happen.  I know there is a higher hand involved, simply guiding us to the right people at the right time.

“Good, good…”  She returns my smile and walks to her desk.  She doesn’t seem bothered that I am here unattended. I took advantage of an open door and let myself in to snoop before our team meeting today.

“I hope you don’t mind, I came in early…I love seeing his work.” I say sheepishly at being caught, but also beaming with pride.   She waves her hand in dismissal.

“Help yourself; this room is always open to you.” She begins gathering papers on her desk and I continue around the room.

I only give her a nod as I have my arms wrapped tightly around myself;  Either to hold in my joy or to keep me from snatching his work off the wall and sobbing.   I can always pick out his papers as his writing is messy and his pictures not as advanced as the other children’s.  However, there are a few pictures and writing samples that I notice are similar to his.  I don’t care either way.  I am simply overjoyed at the fact he even has work on the walls; that he is participating and getting the opportunity to learn.

One by one, the rest of our team assembles.  Brie, Toni, Leigh, and then Dan.

“Hello ladies, nice seeing me again.” He says with his charming grin.  They all roll their eyes and giggle politely as they all are too familiar with his lame jokes.  I too, smile at him as we all take a place around the semi-circular table.

I am floating with bliss at the reports of his success: with conversations with peers, with reading, with using the bathroom alone (a feat he could not do at public school-somehow he would hold his bladder: All Day).  I’m also amazed at his interaction with Ms. Abrahms.  She often asks to work with him alone and actually was able to access him with his academic progress.  Something the public school district staff had difficulty doing.  And she did it in a few short weeks.

“He’s not the top of the class and he’s surely not the bottom.  He’s right in the middle.” Ms. Abrahms says matter of factly and then gives a broad smile.  I can tell that she’s proud, and already invested in him…and I want to hug her across the table.

Right in the middle, right in the middle…I keep chanting it in my head.  Who would have thought how beautiful the equivalent of “average” could sound?

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#51

I must have a defeated look on my face as Miss Sally pulls up next to me.

“How’s it going? You guys okay back here?”  Miss Sally asks me.

“Oh, we are fine.” I say unconvincingly.

She smiles at me. “Really?

After the twenty-five minutes of chasing Ryan I am truly worn out.  Not just physically, but emotionally.  I don’t know how I can keep this up.  It really is pointless.  He gets absolutely nothing out of each class.   I was going to speak with her at the end of the year, but decide I could lay it on her now.

“Mrs. Sally, this is…Ryan has such a hard time…the class is just not made for his…” I stumble trying to figure out how to tell her nicely that it isn’t worth anyone’s time him coming to this class.

“I know what you are trying to say.” She says with a sweet smile on her face.  She always looks like she has a secret.

I feel the guilt rising up in my throat as I gain the courage to tell her we just aren’t going to come back next year.  I have been researching special needs catechism and did not come up with much.  But Dan and I decided after a long evening of me venting after class that maybe he just isn’t ready and we wait until he’s older.

“Mrs. Sally, I think it best Ryan not attend–“

“–I know what you are going to say.” She interrupts me.  “But, I’m going to ask you a favor.” She stops her wheely chair and turns it to look at me so I stop.  This seems serious.  Ryan is walking ahead of us with the other children so I keep one eye on him.

“Be patient.” She says simply.

That’s the favor? Be patient.  Does she not know that every part of my day involves more patience than I ever knew I had?  My whole existence is commanded to be patient with him.  Right now I feel Luke being spoken to by Yoda.   “Do or not do, there is no try”… doesn’t she know the painstaking ends I go to have patience?  I can only imagine the look on my face because she smiles even broader.

“I’m working on something…something really great, to fit the needs of kids like Ryan at our church.  I’ve got a group who need their own class.  I just need more time to get it organized.”

Oh! She doesn’t mean to be patient with him, she means with her.

“Oh, okay.” I say happily, realizing my blunder.

“I will get you some information over the summer.”  She starts to turn her chair to indicate the conversation is over, and stops again. “Don’t give up on us okay?” She doesn’t wait for my answer only wheels away.

 

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