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Autism and the Teenager March 17, 2015

Posted by hopeauthority in Autism, autism activities, autism diet, autism teen, humor, Parenting, special needs, specific carbohydrate diet.
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He turned 13 this week. A teenager now.

Oh My God. How did this happen?

On one hand, I feel like it was yesterday when he was born, then diagnosed at almost 2. Maybe the fact that his autism had us locked into the “terrible twos” for ten years has something to do with my disbelief that my little man is now a teen. Yet on the other hand, I feel like I’m 102 and I can’t remember life before autism.

I had to laugh at all the Facebook friends who saw the birthday post that I have a teen… and started warning me to go out and buy hair color now. Hello? “Now”? “Now”, you say? Where have you been? Honey, I’ve been Clairol’s best customer for this whole 11 year ride. (Of course, I’ve been known to sport that gray “skunk stripe” more times than I’d like to recall when I didn’t have the time to get to the salon.)

Anyway, autism has grayed me, and aged me. And the teenage years to come scare me.

The hormones kicked in about a year ago, along with the teenage angst and the mustache. How is it that the kid has a mustache at 12 anyway? Seventh grade seems young to me for that. My boy. He is so gorgeous with his green eyes, slim build, long hair and ready smile. He could model…if only he could sit still and focus long enough.

I worry about his attraction to girls and their attraction to him. I see heartbreak and frustration coming. He isn’t “typical” enough for a relationship yet. Maybe someday. But he desperately wants to make connections and is trying so hard, though he lacks the conversational skills. His life-long desire to hug everyone, once cute, is getting awkward now as he grows to an already 5’4′ tall. Language is the one thing, no, the biggest thing, that prevents him from the breakthrough we all feel is right on the other side of that invisible wall.

He’s come so far though. I never thought he’d talk when he was first diagnosed. And while I can’t really yet imagine it, I am hopeful he will live a somewhat independent life someday. He takes dance and piano and acting lessons. He plays basketball, baseball and lacrosse on special needs teams. And in one of the greatest feats ever: He sang a two minute song…Do you Hear the People Sing from Les Miserables!…all alone with only an instrumental accompaniment while competing in a suit and tie in a local pageant on the stage of a large community theater. Massive accomplishment. Yet, he can’t hold a conversation.

You know what? Conversation is overrated. Today is a day to celebrate how far my wonderful teenager has come. And how bright his future will be. How bright all their futures will be.

* * * * * * * * * * *** * * * *

Brag on: What has your child accomplished that you never thought he/she would? Or what do you fear your child will never accomplish?

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Finding Time to Blog on Autism May 21, 2013

Posted by hopeauthority in Autism, autism diet, Children, humor, Parenting, special education, special needs, specific carbohydrate diet.
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your-are-late

Oh. My. God.

I am so sorry… and so stoked… at the same time.

I don’t have to tell you why I fell off the blog bandwagon because you “get it”. Autism gets in the way of so many things. Including blogging.

Days fly by. Then weeks and years follow. And before you know it, your little “Fabio” is 11 and ready to graduate fifth grade and go to Middle School next year.  I simply can’t believe the time has passed. And yet I look so young. Not!

I’m not sure if any of my original followers are still out there, but I’d love to hear if you are and to catch up on how your not-so-little ones are doing!

The good news is that I’ve tried many new things for my little man and will be able to share that all with you. He is still on the SCD (Specific Carbohydrate Diet) and that’s 8 years now! I never thought I could keep up this maniacal pace of cooking and baking everything he eats for so long now. But I have. With the popularity of Paleo and Primal diets, SCD is easier than ever as many of those recipes fit SCD or can easily be adapted to comply.

I am looking forward to being here more often. You see, I blog for a living for some really wonderful doctors (part of what makes it hard to blog for pleasure). But here, I only have you guys to answer to, and I don’t have to weigh Every. Single. Word. I can just let it spill from the heart. Or from the gut. Whatever it happens to be that day. Uncensored “stim talk”.

Before I dive in, are there any questions? Any issues you’re having I can help with?

I can’t wait to start sharing all the funny things, the inspiring things, the ugly things…come on, it’s real autism here not the sugar-coated version. Also, there are the therapies like NAET, Braincore and HBOT. And the school and extracurricular stories. And the cursing…

Puberty is coming. Lord, help me.

It’ll be a blast. I promise.

* * * * * * * * * * * * * * ***

Who are you? Tell me about your little one.

 

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.

Autism: Birthday Party or No Birthday Party? March 10, 2010

Posted by hopeauthority in Autism, Children, Family, Parenting, 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: One step forward, two steps back February 25, 2010

Posted by hopeauthority in Autism, Children, Health, Parenting, special needs.
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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 and the School Play February 18, 2010

Posted by hopeauthority in Autism, Children, Parenting, school, special education, special needs, specific carbohydrate diet, Uncategorized.
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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.
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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 Statistics Now 1:100! October 5, 2009

Posted by hopeauthority in Autism, Children, Family, Health, Parenting, special education, special needs.
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There’s many stereotypes and generalizations about autistic kids. Like they don’t handle change well…they like routine…they hate transitions. Well, maybe the apple doesn’t fall far from the tree in this house.

I was on a roll with this blog when my aunt passed away in May. For three and a half months, I found it hard to carve out the time for blogging. It’s not about just posting comments, but also about reading those of others. It’s about sharing and connecting.

My aunt died. My routine was broken. I was unhappy about both. Then a new routine of not blogging set in without me really realizing it. And then that became a hard routine to break.

And so much has happened that was newsworthy in the public eye… as well as in our private life… that caused me to at least think “I gotta get back to my blog!” Yet I didn’t.

I let horror stories go. I didn’t pay proper respects at the loss of Ethel Kennedy Shriver, or of local autism heroes. I’ve been lax in reporting Fabio’s HBOT progress or any of his milestones and challenges. There’s a 100 posts in my head that never made it to the screen.

But today, in Newsday, my local newspaper, an article by Carla K. Johnson, entitled, New study  reveals worrisome autism numbers, jogged me out of my fog and sent me running to the computer:

Two new government studies indicate about 1 in 100 children have autism disorders–higher than a previous U.S. estimate of 1 in 150.

Suddenly, I am moved to write again. But I am speechless. 

Perhaps a moment of silence would be best…

Autism and School Picture Day May 19, 2009

Posted by hopeauthority in Autism, Children, Parenting, school, 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…

The Mainstreaming Experiment April 21, 2009

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Today, Fabio had his first taste of a typical classroom. Just a taste.

And I am thrilled to report that it was freakin de.li.cious!

My little guy has worked so hard this year. A few months ago, he got to mainstream into a typical first grade class for gym. He happens to be very athletic and coordinated, so we reasoned that gym would be a good place to start mainstreaming. And because that’s gone so well, I suggested at his April 1st IEP that we consider experimenting with a more traditional and structured subject.

His teacher agreed and Fabio is now going to spend some time each day in Reading in a typical first grade class of about 25 kids. Starting today.

I wanted to call the school, like 15 times, to see how it went. I was imagining the worst.  Would he even go into the classroom? Would he melt down from the terror and be unable to transition? Would the teacher be supportive? Would the kids be nice? I could barely wait til the little bus brought him home to find out how it went.

Me (excitedly): So, did you go to Mrs. L’s class today?

Fabio: Yes.

Me: Well, how was it?

Fabio: Good.

Me: Tell me what you did. Did you read with the other kids?

Fabio: I want Noggin, please.

Argh. So close…yet so far. This is going nowhere. I know…I’ll check the communication notebook for a note from the teacher (who was forewarned that failure to send a note home with details would result in a frantic phone call instead).

There I found it. The note. It said:

Fabio had a great day. He went to Mrs. L’s class for reading. NO BEHAVIORS!  He raised his hand and participated in class. He was very interested in the new environment and was looking around the room. Fabio continues to do well in mainstream gym and he’s making friends.

I stood there and took it all in for a moment. Unable to speak. Joy and hope daring to well up inside me.

No behaviors? Raised his hand? Participated in class? Is making friends?

The words assembling a vision in my mind of my little boy… who works so hard… bravely facing this major transition. Boldly crossing over from his autistic class to a typical one…just for awhile. Overcoming all the social, behavioral, and sensory obstacles of his surroundings that no doubt were bombarding him the entire time. Mentally slaying those dragons.

The journey is long and hard. But it’s days like this that replenish the spirit.

I am so proud of my little boy. So, so proud.