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Autism and the Holy Communion April 16, 2011

Posted by hopeauthority in Autism, autism diet, humor, religion, special education, special needs.
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It was a tough year of religious education with “C”. Many cold and snowy Saturday mornings. Many bouts of his OCD with the doors making me crazy. One sweet old doormat lady 1:1 volunteer who was totally useless ill-prepared for working with an autistic kid.

There are 3 special ed boys making their communion this year out of the class of 12 kids. Because of his many food allergies, there would be gluten free Jesus on the big day! Thank God…I thought I’d have to make my own Jesus and have to admit I wouldn’t know where to begin.

Out of all these kids, mine is the only one known to the parish priests. No, not because I was a good Catholic who brought him to Church every week so he’d get used to it. I didn’t. I was weak. I caved to the public “skunk eye” pressure after one incident where he threw up down my back after a crying fit at Mass as a toddler. Yes, you can get the skunk eye in Church.

They know me, my husband, and our son because our daughter has attended the parish school for 8 years. And since I am one of those parents who volunteers for everything up at the school, they know us well. Which makes the following tale even harder to tell.

Cut to the Communion rehearsals.

The doormat, bless her heart, has no control over “C”. (He immediately sized her up last fall and zeroed in on her weaknesses. She was doomed.) I decide not to intervene to see if she could guide him through this rehearsal. Big mistake.

You see, “C” is obsessed with doors, so just getting him to walk into the church (instead of repeatedly opening and closing the big glass entry doors) is tough. Of course, if you blow that, you’re sunk and he will spiral into a fit of non-compliance. The other problem is that his sister acts in local community theater, so to him, the altar’s raised, 4-step platform is just a big stage calling to him. Loudly. And he can’t pass a stage. Not without bowing, anyway.

So, he breaks away and goes up on the altar! He is taking a bow to imaginary applause. He is even holding his arm up and out behind him, like stage actors do to give props to the pit orchestra. Just great…

Now it becomes apparent that I have to go get him down. As I head toward him with the look of death a serious face, he runs behind the altar and, looking up at the 80 foot tall crucifix hanging above him, blurts out “SUM OF A B-I-I-I-I-T-T-C-H”.

Could you freakin die? Seriously.

And I’m standing up there asking myself what the hell I was thinking putting myself him through this sacrament. Sure it’s funny now. It really is.  I have my own issues with God and the “why my son?” thing. So why is it that this Communion is so important to me, I wondered, while dragging my holy terror off the altar in a headlock.

The second rehearsal was more of the same. With a sprinkling of him declaring to the congregation “Face it. I’m just not good in church!” Ugh.

So when Communion day arrived, I was a wreck. I’d warned the handful of family and close friends (who still don’t really get it) of how bad it could be, in the custom invitation I’d sent out. I worried big time about the fancy navy blue suit, crisp white dress shirt, and (gasp!) tie and (another gasp!) dress shoes. He is, after all, a kid who can (and does) undress himself in 5 seconds or less, every chance he gets. I envisioned him coming down the aisle barefoot,  in his wifebeater undershirt. I also worried he’d spit out the “church food” as he called it. Yep. Church food.

Turns out, he made a fool out of me. Walked down the aisle like a GQ model down a runway. I mean, he really worked it. He sat through the whole four hour Mass like an angel. And when it was time to receive his gluten free Jesus, he was precious. Took a couple little bites and swallowed hard like they were stuck in his throat. I had his shoulder in the Vulcan death grip the whole time, but his curiosity over the church food trumped the appeal of the stage. Take that, you Skunk Eyes.

God truly has a sense of humor.


Prayers and Good Thoughts Requested May 9, 2009

Posted by hopeauthority in Autism, Family, grandparenting, Health, religion.
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On April 25th, I wrote a post about my Aunt Angie’s visit. Please read it now, if you haven’t already.

I was a little exasperated by the way she played with Fabio constantly, but in a way that was too “in his face” and therefore frustrating to him at times. She kept trying to connect with him.  I was frustrated at how hard it is to teach someone how to play with an autistic child…and at the fact that playing even has to be taught.

What Fabio really responded to was the way my Aunt Angie just loved him. It was when she would back off that he’d seek her out for hugs or kisses. And I’ll never forget the memory of Fabio climbing into her bed in the morning and her responding by simply … instinctively… covering him up with the blanket and drawing him into her side for a snuggle.

Ten days after she went back home to Pennsylvania, she suffered a massive stroke.

For those who are so inclined, please pray for my aunt’s recovery.

The world can not afford to lose someone like her. Fabio can’t either.

Autism and the Assumption of Inconvenience April 26, 2009

Posted by hopeauthority in Autism, Parenting, religion.
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I call it the “Assumption of Inconvenience”.

You’ve all likely experienced it already. Often. But if not, you will. Oh, you will.

It comes into play when there’s an event, holiday, or a function of some importance… being hosted by friends or family with whom you may actually have a good relationship… that you so righteously expect to be invited to.

But… the invite never comes.

WTF?, you ask.

This just happened to hubby and me …again… this week.

In this latest situation, I innocently asked my good friend Rose on Wednesday when she came to pick up her freakin dog that I dog-sat for (more on that later) when her daughter…our Goddaughter…was making her Confirmation.

She replied: “Monday”.

As in tomorrow.

Ummm, were you ever even going to tell me?

These are really close friends. They “get” the autism thing better than anyone we know. We love them and their kids and the feeling is mutual. So why the apparent snub?

The Assumption of Inconvenience, of course.

Oh, let’s not bother Aunt T and Uncle A to have to make all the arrangements to be able to attend the Confirmation on a Monday night. They have enough on their plate already. Yada yada…

So, we will be missing yet another big event due to this misguided attempt to “help” us by excluding us.  Doesn’t it make so much more sense that if you’re so sympathetic to our plight, why not include us with an invitation and just be understanding if we do decline?

I really hate the the Assumption of Inconvenience.

Almost as much as the Snub of Intent or the Stranger’s Glare of Ignorance.

The Autism Christmas Miracle in the Church December 18, 2008

Posted by hopeauthority in Autism, humor, Parenting, religion, special needs, Uncategorized.
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For the record, we’re Catholic. Typical daughter goes to Catholic school. Autistic son to public. Both are in the perfect place for them. (I won’t get into how ridiculous their different vacation schedules are…)

Do we go to Mass every week? No. Every month? No. On holidays? Does running the Girl Scout cookie booth sale in the church lobby on Palm Sunday count?

Hey, my daughter gets her religious education during the school day and she goes to Mass once a week with her class. That’s something, right? It’s not really that I’m lazy. I just think that burning in hell for eternity would be less painful than suffering through an hour in church with my little angel boy.

And God gave our family autism, right? So He presumably understands. And hopefully forgives. But I digress…

So, last night was our daughter’s Christmas concert and she is in the choir. We have never taken ‘C’ to any of her concerts, so as not to overstimulate him or embarrass/upset her with the inevitable disruption. Never, that is, until last night…

Picture this scene. Long aisle in the church. Choir on the altar. Hundreds of people. Hubby took daughter ahead of time. Inlaws arrive first among the masses so we have seats in the very first pew. The plan was for me to arrive just before the concert started so ‘C’ would not have to wait any longer than necessary.

Did I mention I am always freakin late for everything?

So, I swing open the church doors … like someone about to object to a marriage or something… and the whole place looks at us as the first song is in progress already. I looked up at the big 25 foot tall crucifix over the altar and silently said “Dear Jesus, please let ‘C’ walk quietly down this freakin football field  aisle without being noisy, digging in his heels, running away, or throwing a tantrum.”

And, like a miracle, he did.

Then, he sat right down in the front pew and quietly, peacefully…dare I say typically…watched this concert for over an hour! No food, drink or toys (other than one hot wheel in each hand which he just held onto). Not a peep. Not. one. peep. He sat there taking it all in, loving the music. And for some unexplainable reason, I didn’t feel that ever-present fear I usually feel as I wait for the bubble’s inevitable bursting at a time like that. I didn’t feel that stress that ruins every outing, even when the outing does go well.

As time went by and he got tired, he’d rest his head against my arm. As his bedtime came and went, he began to yawn. I began to worry. But he just looked up at me at one point and said quietly “Time to go home now. Thanks. See ya next time.” Too adorable.

Against my better judgement, and knowing from past experiences that it was the wrong thing to do, I pushed my luck and didn’t leave. I told him gently that it was almost over and we’d be leaving real soon and I was so proud of how good he was sitting. And you know what happened next? NOTHING. He just kept being perfect.

At the end, he patiently got up and walked slowly behind the throngs of people ahead of us (front pew remember?). He patiently tolerated the happy stares and small talk from my daughter’s classmates’ parents… who gawked at my son and his remarkable behavior. Surely they imagined him shackled in the basement for the past 5 years since they last saw him… in a stroller!…at a school function. He got in the car and asked for his sister’s goody bag (a little gift we’d bought her). Instead he got the toy we’d bought just for him when we dared to dream that the night would go half as well as it actually did.

I got the rarest and most precious of gifts that night… a glimpse of the awesomeness of being a typical family. If only for an hour or so. An hour that felt like forever.

May you all experience such a Christmas miracle this season.

Explaining Death to an Autistic Child November 12, 2008

Posted by hopeauthority in Autism, Children, Family, Parenting, religion, special needs.
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 I recently read a newspaper article authored by a well-respected spiritual leader in my community that addressed this issue as it pertained to a nine year old autistic child who lost a grandparent. I was intriqued at the thought of him providing us with some guidance on just the right way to explain this delicate mystery to autistic children.

According to him, you handle it the same way you’d handle the topic with a “typical” child. At first I felt “jipped” out of some deep expert advice…like the good rabbi had copped out. But then I realized he was right on with his response.

We know better than anyone that our kids (for the most part) understand far more than people give them credit for. Maybe it’s because many autistic children struggle with language and have limited or no verbal capabilities. People forget that they not only hear, but they also understand what you are saying in their presence. And many people tend to underestimate just how much these kids do know.

This particular rabbi beautifully explained in a non-denominational way, that many children can understand a concept of the body and the soul. (I, of course, am about to butcher his beautiful essay in an attempt to summarize it!)

Okay. The body and the soul. The way to explain why they won’t see the physical person again on Earth is because the body dies and goes back to the earth. (This explains the funeral/cemetery/cremation.)  And the soul lives on and goes back to (insert your God of choice) where it gets to see all the rest of the family who’ve died before them (like a reunion to be happy and less scared about).

So, as the parent, it is your job to determine how much of the above description your child can handle. I guess we just take our child’s developmental age into account when deciding. Otherwise, the same general rules apply for our kids as for typical kids.

I’m not sure exactly how well my son would understand the above explanation just yet, at only six years old. Death is certainly one of those tough concepts to explain to a kid of any age, especially if the departed was someone very close.

That brings me to another tough concept: thankfulness. For a Thanksgiving project in school, ‘C’ was sent home with a yellow construction paper heart on which he was to write a word depicting what he was thankful for.

After all the attempts at priming him to answer with the altruistic “my sister, ‘N'” or “my family” like most of his peers will no doubt bring in on their hearts, he repeatedly…and somewhat emphatically…answered “Presents!”  So, with a sigh on one hand…and a laugh on the other…I encouraged him to write “Presents” on his heart. After all, it was his choice. His informed choice.

Now there’s something to be thankful for.

With Autism, Every Day is “Day of the Dead” November 2, 2008

Posted by hopeauthority in Autism, Family, Parenting, religion, special needs.
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Dead tired. Dead broke. Dead battery…

Today is the Day of the Dead. A day celebrated in different ways by different cultures. I have my own strange way of honoring the day which will no doubt creep many of you out…

I have a meal (usually lunch since its cold here in November) in the cemetery at my mother’s grave. Nothing fancy or drawn out. Just something quick that I eat while freezing my ass off on a blanket. I talk, she listens. I write down on a teeny piece of paper my hopes/prayers for the coming year that I’d appreciate her intervention with on my behalf. She’s been up there for almost 15 years now. Surely, she’s made some good contacts, right? Then I bury the little paper right there by her stone. And I hope. And hope.

For the past few years, any of you could guess what I’ve wished for. It starts with a “RE”, ends with a “Y”, and has a “COVER” in between. Each year, ‘C’ gets a bit better, but, honestly,  I am getting impatient. It’s friggin cold up on that hill overlooking the water…

Truth is that I really miss my parents. Neither of them lived long enough to become grandparents. It would kill them to see how hard life with autism can be most days…especially since they gave me a pretty great and charmed life (except for that awful Ford Galaxie from the government auction…with the bullet holes…which was my Sweet 16 gift–but that’s another story). Of course, if I had them in my life, it would certainly be easier.

So, today I honor them by sharing a meal and revealing my greatest wish. The other 364 days, I try to honor them by being a good example of a parent, under often trying circumstances. And I hope that wherever they are, they are proud.