Autism and the Holy Communion April 16, 2011
Posted by hopeauthority in Autism, autism diet, humor, religion, special education, special needs.Tags: Autism, communion, first holy communion, gluten free host, religious special education
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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.
Autism: Birthday Party or No Birthday Party? March 10, 2010
Posted by hopeauthority in Autism, Children, Family, Parenting, special needs.Tags: Autism, autistic child's birthday party, Family, special needs
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Well, it’s that time of the year again. Time to plan Fabio’s birthday party. He wants an indoor pool party (we still have snow here).
And I won’t even get into how bothered I am by the fact that he’s turning EIGHT. Where did all that time go? And yet, sometimes it feels like he should be 20 because he’s been 2 for about 10 years…
As I was making out the short guest list, I realized that only one of the kids who had autism had had a party of his own and even that kid just had one or two. And its not a financial thing. The moms, all of whom I know well and for at least 3 years, offer these reasons:
1. He doesn’t “get” the birthday party concept, so why spend the time and money?
2. He doesn’t “get” the presents thing.
3. He doesn’t interact with his peers, so why bother if he won’t even notice anyone’s there.
4. I can’t predict how he’ll behave on that day and if he’s “off”, then it’ll all be a waste.
5. I’m tired of family or friends complaining that he doesn’t come up to them. They don’t get it and I have no patience.
6. He won’t know what he’s missing.
On one hand, I can relate to a lot of what they feel. And yet, even with hesitation, I booked the party today. For this Saturday. (Not too last minute, right?)
Maybe I’m just wishful, but I think Fabio does understand that kids should have a birthday celebration. And I think I’d be sad if the only cake was the one at the dinner table with just the four of us. Is it just that I can’t let the dream of typical die? Maybe. And I’d beat myself up with Italian guilt if I did actually hurt his feelings by not having a party with his peers. But that’s me and it’s what I hope is right for my son.
I’d love to know what others think about having traditional birthday parties for their autistic kids. Do you or don’t you? Do you do it only for your typical kids? And what about the guests: a mix of typical and special needs children or not? What kind of party do you have (ie pool, bowling, etc.)?
Share your thoughts here.
Autism Diet Challenge: Just Try It! March 1, 2010
Posted by hopeauthority in Autism, autism diet, Children, Health, Parenting, specific carbohydrate diet.Tags: Autism, autism diet, celiac, children's diet, Crohns, Feingold diet, GF/CF, IBS, Jenny McCarthy, Parenting, SCD, special needs, specific carbohydrate diet
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Right off the bat I want to warn you that I am sticking my neck out here in an effort to save the world, instead of just worrying about helping my own son. And I’m sure someone is going to make me regret that I did, but I’m going for it so I can sleep at night…
Ok. I try to be open-minded, and I love a good debate. And I really try to be respectful of other people’s opinions when they differ from mine.
But if I’m being truly honest with myself, I need to face this one pet peeve I have that sort of deviates from what I just said.
I can’t for the life of me understand why parents won’t at least TRY an autism diet to see if it would help their child!
Let’s examine some top reasons why people won’t try it:
1. There’s no proof it works, and recently, there have been reports that say it doesn’t.
To that I say: Not everything, especially something like the implementation of a diet and it’s affect on behavior, can be adequately tested in a study. Is there anyone out there who wouldn’t trust their own gut and eyes over a medical report? Let’s not forget how many decades the government and medical establishment let us go on thinking cigarettes weren’t harmful…
2. It’s too expensive.
Yes, it is more expensive in the sense that you will spend more money on food for a special diet than a mainstream diet… unless of course your regular diet is one of take-out food. But, if your child felt better and behaved better, wouldn’t that be worth the cost? Maybe you’d offset the diet’s cost with the money you might save on other treatments that may now not be needed.
3. It’s too hard to do.
It is hard, at first. And at times, like parties and holidays. But parties and holidays with a wild child are hard too. What if the diet helped your child and you and he could enjoy the party for a change? In time, the diet just becomes a part of life and that’s how you’d have to look at it. Look at it as a lifestyle choice, not a diet. Otherwise, like all diets, it’ll be doomed to fail.
4. I can’t imagine “doing this to him” for his whole life!
First of all, take small steps. Tell yourself you’ll just give it a real try for 30 days. And then give it a real, honest try. Even when it’s difficult. And it will be hard at first…especially if it is working! No cheating. You will know in 30 days if there’s some noticeable improvement in your child. And when you see that change, that is where the strength to continue the diet comes from. And support groups online. For me, I saw improvements in my son within 2 weeks, but it took about 18 months on the diet before his gut healed enough that he finally had a formed stool…just days before his scheduled colonoscopy and endoscopy, thank God.
In my son’s case, we were fortunate enough to have very specialized labwork done through an autism study he was involved in (lab work you can’t just order from a local lab) and we KNOW he has some mutations and can not digest the proteins in certain foods. In fact, his body breaks them down into harmful opiates, which, when released into the bloodstream, travel to the brain and contribute to the autistic behaviors. For me, feeding him the typical American diet is like feeding him poison. What if your child has that kind of mutation, but you don’t know it?
5. He won’t eat that food. He’s picky.
Okay, who is the parent here? This is the time to get tough. And the earlier you implement a diet, the easier it is to do. My son was just turning 3 and you have more control at a younger age. Plus the diet will be well established by the time he starts school and he won’t even remember McDonald’s nuggets, so he won’t long for them, though he may be curious about them.
Think of those processed foods as the enemy. Most kids are picky eaters. It’s in your hands whether you are going to let your kid’s chosen 4 favorites be healthy ones or not. If you stick to your guns, your child will eventually give in since his survival instinct will make him eat this way if that’s all you offer. Plus, some kids are actually addicted to foods their bodies are craving because bacteria in their guts need those foods to live. If that’s the case in your child, you need to break that cycle by depriving the bacteria from feeding. You do that by eating differently. You starve the bacteria and they die. And the gut heals.
6. It’s not healthy.
Come on. How balanced do you think the typical American diet of chicken nuggets, hot dogs and pizza is? With so many children becoming obese and diabetic, these diets are actually a gift of health that you can give to your child.
Even adults would do well on this diet. The Specific Carbohydrate Diet that my son is on has been helping celiacs, Crohns and IBS patients for over 50 years. Have you noticed how middle aged folks are suddenly unable to tolerate dairy or gluten? I’ve been told it’s because our bodies haven’t evolved fast enough to keep up with the processing of the foods we eat today. We so-called healthy people can’t break down these chemically-processed foods. How can our children then?
Under the supervision of a medical professional and with the proper nutritional supplementation if needed, these diets can resolve intestinal and digestive problems that you may not even realize your child is suffering from. Don’t you want to feed your child a diet that makes him or her feel their best?
7. My child doesn’t have any food allergies or sensitivites so he doesn’t need the diet.
Maybe. Maybe not. A doctor can give a diagnosis. But a mother’s instinct says a lot, too… if she knows what to look for. Does your child have any of the red flag signs of an allergy or sensitivity…such as red cheeks, skin rashes/eczema, dark or reddish circles under their eyes? Maybe constipation or diahhrea? Does he eat certain few foods to the exclusion of most others…almost like an addict? Can’t sleep at night?
8. I don’t know where to start.
First, find a doctor who supports autism diets. A recommendation from a friend is best, but failing that, look for a DAN (Defeat Autism Now) doctor or chiropractor. Allergists and immunologists with autism practices may be able to help you. Some, but few, pediatricians may too. Be sure they have experience with autism diets.
Do some research. There’s a few different diets out there. The best one (in my opinion only) is the Specific Carbohydrate Diet my son has been on for 5 years and you can learn all about it by reading the fascinating book Breaking the Vicious Cycle by Elaine Gottschall. SCD is like GF/CF to the extreme since it allows no grain at all and my challenge is to try this diet for 30 days if you think you can handle it! (For more info, see the Autism Diet Help tab in this blog). But there’s also regular GF/CF (gluten free/casein free) diets and the Feingold Diet.
****I’ve always been an advocate of therapies that may improve the lives of our autistic children …so long as they do not have the potential for harm. These diets are healthy ways of eating for anyone. There is no harm if a doctor is on board with any nutritional supplementation. It may not make any difference in your child’s behavior, but it won’t hurt him or you to try it.
But what if it helps him? What if it even recovers him?
Can you live with yourself if you didn’t take that chance? It could be the simplest of answers. Just 30 days to see if it may help. You don’t need Jenny McCarthy or me to tell you. You will know if it’s helping. And if it’s not, go off it with the peace of mind of knowing you gave it a real try, instead of living with the nagging wonder if you should do it.
By April 1st, those persistent red cheeks and shiners could be gone. Maybe even some language. Please trust me and just try it. And come back and let me know how it went!
What has your experience been with autism diets? I want the good, the bad, and the ugly…
Autism: One step forward, two steps back February 25, 2010
Posted by hopeauthority in Autism, Children, Health, Parenting, special needs.Tags: Autism, brain balance, Health, Parenting, special needs, speech delay
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What was that saying from science class?
Something like “for every action there is an equal and opposite reaction”. Well, I think there’s some real truth in that…especially when applying it to kids with Autism.
Take my kid, for instance.
Every time he has a big break-through in language development, it’s accompanied by an equally big setback in behavior. Seriously, every time one positive gain is noticeable, so is the accompanying glaring setback.
Do you notice that in your kids?
It’s almost like the section of the brain that gets fired up and starts cranking out new language suddenly sucks up all of the brain’s total energy supply so that it can fuel the language burst. Like it steals the energy from the other parts, leaving the part of the brain that’s responsible for behavior depleted and gasping for air.
Leaving me with a little monster… who. won’t. stop. talking.
I’m not complaining about the talking. After all, I repeatedly promised … in countless late night secret bargains with God… that I’d never complain about how much Fabio talked or anything that might someday come out of his mouth if God would just let him become verbal. And I am so thankful.
But the frustration over dealing with behaviors resurfacing after you thought they were gone for good can be overwhelming. Why does nearly every milestone have to come with a price tag? Isn’t there ever a win-win?
So, with little choice in the matter, we wait it out. We wait for the balance in the brain to be restored and the energy to flow evenly. We wait for the language to take root and the behaviors to level off.
For we know that when this little maniac transforms back into his more manageable self, he will be one more step further along in his journey from a simple exchange to a conversation.
Autism is like the Olympics February 24, 2010
Posted by hopeauthority in Autism, autism diet, Children, Health, Parenting.Tags: Autism, autism diet, Children, Health, holistic, olympics, salicylates, SCD, specific carbohydrate diet
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The Thrill of Victory…and the Agony of Defeat.
My last post was clearly a thrill of victory one.
This one is more of an agony of defeat kind.
Been going through a rough patch with Fabio. I recently messed with his diet in one of my very rare attempts to broaden it ever so slightly. Nothing crazy or not permitted. Just some things high in salicylates, which he is kind of sensitive to…so we avoid them for long stretches of time and then periodically attempt to reintroduce them.
That attempt sadly sent my little guy over the cliff just like that Olympic skiier whose famous wipe-out in the 70’s lived on for decades as the “face” of the agony of defeat.
He’s been having trouble in school attending to his work and focusing. He’s been aggressive and often full of rage when the slightest demands are put upon him.
During the never-ending month long week the kids were just off from school, I finally took him to the DAN chiro, who took one look at his eyes and said, “What did you do to his diet?” Then he looked at my eyes, full of tears. All I could blurt out before they ran over was “One of us needs medication.”
Every minute of every day so often, I second-guess myself about the choices we’ve made regarding Fabio’s care. The natural/holistic autism course we’ve taken. But deep down, I think it was right … for us. Is right, for us. To me, it is more important that we do no harm. Even if the choice means that he doesn’t advance as far, as fast. It’s so easy to imagine that the other road would have lead to a happier place when we hit a bump in the one that we’re on.
So …to continue with my cheesy sports analogies…we’ve decided to stay the course. When the going gets tough, the tough get going … I’ve removed all of the offending additions from his diet, and finally after a freakin week of insanity am now seeing my happy little man emerging from the edge of the cliff he’d gone over.
So I’m forced to face that as Fabio’s coach and biggest fan, I can dictate the course of his daily routine and diet, guide him as best I can, and cheer loudly from the sidelines as he works so much harder than the average person, day in and day out. I can triumph in his victories and cry over his setbacks along the way. I can help make him the best that he can be. But there are factors out there that I can not control. All any of us can ask of ourselves …and those we love …is to try our best.
And if he doesn’t get on the podium this year, there is always next time. Training begins hard… again… tomorrow.
Autism and the School Play February 18, 2010
Posted by hopeauthority in Autism, Children, Parenting, school, special education, special needs, specific carbohydrate diet, Uncategorized.Tags: Autism, mainstreaming, music, Parenting, SCD, school, school play, special education, special needs, specific carbohydrate diet
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“He’s going to be a horse.”
The note came home from his second grade teacher. The play he’s been working so hard for since October in his mainstream Music class was rapidly approaching.
A HORSE??
What the heck kind of play is this? Is it all horses? Is the horse a central character? And most importantly…can the show go on if the horse runs away?!
The note continues. “Must wear solid black, brown, or tan. A headpiece will be provided.”
HEADPIECE?!
You’re freakin kidding, right? Ok. Now, I’m starting to sweat. What kind of headpiece are we talkin about here? Doesn’t matter. I don’t see him even trying it on, much less wearing it for a 30 minute production.
Thirty minutes?
What are the odds of Fabio and his one other autistic classmate making it through this mainstream version of “The Tortoise and the Hare”…with about 35 other “typical” second graders?
Thirty minutes of standing in place on risers, many musical numbers with hand and arm gestures, taking turns, NOT running away, even in the face of all those parents and grandparents and their camcorders…and all the noise.
To date, Fabio has had bad experiences with stages. Graduation from his special needs program right before kindergarten didn’t go well. He was miserable, wouldn’t wear the cap, and was melting in the gown. And he refused to go up for his diploma. One of only 3 kids who wouldn’t. Ditto in two award ceremonies for reading since then.
But time has passed since those events. And Fabio has also had a chance to see his sister perform in several concerts and live theater productions in the community. He goes to the shows, sits nicely, and gives her flowers at the end. And he loves music. Maybe this would be different.
I figured I’d better prepare him in advance for the idea that we’d be coming to see this play. So a few days beforehand, while he and I were laying in my bed relaxing before bedtime, I said in my happy but not too excited voice, “Mommy and Daddy can’t wait to come and see you be a horse in the show.”
“No.”
“Well, um, yes, honey. We are going to come see you just like the other mommies and daddies of your friends. Ok?”
“No.”
Time for a new approach. “Honey, Mommy and Daddy want to come see you just like we come see Nic (Sister) in her shows. We are so happy and proud of you and want to come see your play. And we’ll bring you a present.”
I see the wheels turning as he considers this. I brace myself for the request. Surely he’ll ask for some costly toy…
“Bring flowers.”
Did I hear that right? Flowers? For a school production? For a boy? Well, why the hell not! You got it, bud. And I secretly applauded his connection between his play and his sister’s plays and the ritual of giving flowers.
So we grabbed the camcorder, special treats for the after-party that he could eat on his diet, and of course, the freakin flowers, and we hurried off into the snowy morning traffic to get good seats for whatever was in store for us. And we waited. All the “typical” kids came in and took their places. All the kids in the classes of those kids came in and took their places. All those kids’ parents and grandparents came in and took their places.
Where is he?
Then, bringing up the rear… like a cowboy hearding cattle… marched my “horse” with the horse headband on! He went right to his spot on the riser. The music began.
He was perfect. PERFECT. He was typical. In fact, he was better than typical. No one there would ever have guessed that he or his classmate beside him had autism.
I started to cry. My husband started to cry. His teachers and aides started to cry. His former teachers who came out in the snow from other schools and from maternity leave just to see him…started to cry. And for about 30 minutes we all watched in awe as he did every single thing just right. And he radiated happiness. The little black horse with the headpiece on his head.
And when it was over and the tears were dried, that little horse rode off into the hallway… carrying flowers like a champion.
Autism and the Nursery Witch October 19, 2009
Posted by hopeauthority in Autism, Children, Family, Health, special needs.Tags: Autism, autism awareness, autism diet, autism statistics, GF/CF, Health, special needs
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No sooner did I wrap my mind around the first article with the big jump in autism stats…1 in 100 instead of 1 in 150…but right on it’s heels comes the latest figures. 1 in 91.
1 in 91.
Anyone else feeling sick?
It brings a recurrent and ridiculous vision to my mind. I am standing outside the glass of an insanely large maternity ward, looking in at rows and rows of newborns… with their cute smooshed faces and their arms tightly tucked into their cocoon-like wraps. Soft little beanies of pink and blue atop misshapen little heads. There’s about 100 of them all lined up. Or should I say 91 of them.
And like some sick, twisted fairy tale, there’s a witch hovering over one of those beanies…a blue one… casting a frightening spell that will manifest itself in about 18-22 months, upon the happening of a certain event.
I want to shoo the witch away, but I am too late. I want to hear what she is chanting, but the glass is too thick. I need to know what will trigger the spell to come to pass. Some environmental toxin? Some vaccine? Some seemingly safe food that wreaks havoc on the digestive and immune systems…not too far off from the poison apple?
There are still days that I can’t believe that my blue beanie was the one.
I remember shortly after Fabio was diagnosed 5 1/2 years ago…before I told anyone but the closest family and friends… I was at a carnival and spotted a woman with a boy about 5 years old. She wore a tee shirt with all the stats about autism on its back dating from the time it was 1 in 10,000 until the present. At that time, the most recent stats were 1 in 250. It cryptically stated: “Your child could be next”. I could not take my eyes off her, her child, or her shirt.
Back then, I was haunted by that shirt and so worried about my son’s future. I still worry about his future…every day as a matter of fact. But the idea that the numbers of children being diagnosed with ASD are rising too quickly to even make up such a tee shirt…now that’s a scary thing.
At this rate, it’ll be 1 in 75 by Christmas.
Someone really needs to kill that nursery witch. Fast. The survival of all our beanies depends on it.
Autism and School Picture Day May 19, 2009
Posted by hopeauthority in Autism, Children, Parenting, school, special needs.Tags: Autism, autism tips, Children, grandparents, photographing autistics, school, school pictures, special needs
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Is there anyone…anyone…out there in Autismland who has gotten a good school picture of their kid? Ok, I’ll settle for a decent one. Anyone?
Hmmm. Let me make this easier…
Anyone got one with both shoes still on?
Actually seated… without a tantrum in progress?
How about actually looking at the camera? Okay, that wasn’t fair to even ask. Anyone have one looking even remotely in the direction of the camera? I’m talking anything at an angle less than a profile.
Anyone with a hairdo that doesn’t scream “BEDHEAD”?
Anyone whose boy isn’t clutching a Barbie in each fist?
Anyone whose kid didn’t spill something on the shirt?
Anyone whose kid kept the shirt on despite the annoying tag in the neck?
As you may have guessed, today is school picture day…again. We are lucky enough to have one in the fall and another in the spring. That’s two wasted checks for $35.00 each in a vain attempt to get a normal looking photo like the rest of the world. And to shut up the mother-in-law.
Where in God’s name do these so-called photographers come from? The freakin’ Department of Motor Vehicles! You know the type…they say “On three. One. Two.” Snap. WTF!!!
Speaking of which, there should be a license required to take our kids’ pictures.
Until then, here’s a list of helpful hints to get you through the annual ritual:
- Order the least expensive package since you will probably either send it back or only keep copies for yourself. In the unlikely event you get a winner and do want to distribute it to the entire world, you’ll be happy to pay a bit more for the reprints.
- Don’t count on him wearing the new shirt. Hope. Attempt it. But don’t count on it. You don’t want to start the day on a stressful note by fighting over the outfit. Pick a comfortable favorite that you …and he…can live with.
- Write a note to the photographer in bold print where he can’t miss it (and also tell the teacher to tell him) that your child has autism and to please have patience and make the extra effort to get him to look at the camera…and ask him to take several shots so that one may actually be decent. I tell him I have tons of relatives and am just waiting for a good shot so I can order more pictures.
- Send a back-up shirt to school incase the first choice gets ruined before the photos.
- If you have an old school photo, show it to him before he leaves and tell him its picture day at school today and you want him to sit nice and smile…and then offer him a positive reinforcer for when he gets home.
- Send a brush to school and ask the teacher to use it if his hair gets messy. But if your kid hates having his hair brushed, reconsider this tip and just hope for the best.
- Ask the teacher in advance to schedule the photos for the best time of day for the majority of the class…usually earlier in the day.
So, there you have them. My golden nuggets of school picture day advice for the autistic. Oh, and there’s one more thing:
- Don’t sweat it if they come back embarrasingly lame…as they usually do. Just send your mother-in-law (and everyone else) an enlargement of one of the many great shots that you’ve taken of your kid.
You know the ones I’m talking about…the ones that only a mother can take.
The ones that capture the true essence and spirit of your child. As if you had a license or something…
Stroke: Autism’s “Cousin” May 18, 2009
Posted by hopeauthority in Autism, Children, Family, grandparenting, Health.Tags: Autism, autism and stroke, Children, Family, Health, Parenting, recovery from autism, recovery from stroke, special needs, stroke
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It’s been awhile. My aunt’s stroke has taken me away from the blog partly because of the physical things I need to do for her and partly due to the mental distraction of her situation.
She survived with mental faculties largely intact. Short- and long- term memory are great. Speech is pretty good. No facial drooping. But the right side of her body is essentially paralyzed. Can’t move the arm or leg. She came out of the ICU, off the ventilator. Now stable.
And cursing. A blue streak. (This from a proper woman who never, ever cursed in her life!) She was being starved by a$$holes for God’s sake! And mistreated by these bast@rds! Why, she was going to call her lawyer to start a suit against the whole lot of them morons!
Well, that was the status when I spoke to her last Thursday. So, I had to make the trip to Pennsylvania on Friday to straighten things out.
So, I arrive in under 4 hours, loaded down with dozens of fresh New York bagels and containers of cream cheese for each of the departments who have helped my aunt. Nothing shows your appreciation better than NY bagels!
Needless to say, the so-called bast@rds couldn’t be more accommodating to me…or my aunt. The Director of Nutrition Services came up to go over her dietary wishes in painstaking detail assuring me that nothing undesirable would ever cross her plate again… and that she’d eat plenty. Her doctor came right in to update me.
Even the priest from her parish had gotten my message and showed up to bless her, which brought her much needed peace.
Then just as I was about to end my 7 hour visit and begin the long drive home, they discharged her from the hospital and moved her to its 9th floor Acute rehab center. Argh! So, I started all over with the new staff…who is wonderful. And a few more hours later, I left her in their competent hands to begin her 3 hours per day, intensive therapy regimen.
As I visited with her, I couldn’t help but think about the parallels between autism and stroke. And it brought me sadness and frustration.
Like my son, she sometimes needed to “search” for the words she wanted to say. You could see from her face that they were in there somewhere and she was frustrated to have to make an effort to retrieve what was always so readily available. She will need speech therapy, like Fabio.
Fabio could certainly benefit from some occupational therapy (OT) for his pitiful little handwriting, but he doesn’t qualify for OT services since his other fine motor skills are stong and bring up his overall score on the eval exam. But how can I complain about his scrawl as I watch my aunt trying to massage the life back into her right hand with her left one? She will need OT to relearn every skill she ever had like writing, washing, dressing, feeding.
Fortunately, Fabio is a wiz when it comes to all things physical. I am ever grateful for this gift as I am aware that many autistic children need quite a bit of physical therapy (PT). For my aunt, intensive PT is the most important therapy of all. She must try to regain the use of her right side if she ever wants to live independently again. She needs to be able to move. Herself. By herself. Safely.
It’s independence or institution.
So, I sat there for hours…at times blankly smiling at my aunt while my mind secretly contemplated all these cosmic similarities between her situation and Fabio’s…and I felt sadness and frustration. And I felt tired from the battle he’s been fighting and from the one she must now take on.
But I spoke to her only of hope… though there is little for a complete recovery. A complete “recovery”.
And then I thought of my boy. And the similarities.
And I am sad. And frustrated. And tired.
Update June 16,2009:
My aunt passed away on May 23, 2009, which is why I haven’t been posting for some time. Thanks for your support and prayers.
StimTalk 