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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.

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Autism is like the Olympics February 24, 2010

Posted by hopeauthority in Autism, autism diet, Children, Health, Parenting.
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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 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…

Stroke: Autism’s “Cousin” May 18, 2009

Posted by hopeauthority in Autism, Children, Family, grandparenting, Health.
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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.

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.

Regression by Strawberry May 2, 2009

Posted by hopeauthority in Autism, autism diet, Children, Health, school, specific carbohydrate diet.
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Gotta love those care-free days of youth and all the fun school projects you do in special ed first grade. You’ve got the non-edible projects with macaroni and glue. And, occasionally, you get the edible ones.

And when your kid is on a totally restrictive special diet from hell , these projects are the ones that make you want to kill somebody. Or kill yourself. Oh, and it’s extra special when you get only one night’s notice about the project…

So the note comes home:

We’re going to be making peanut butter and jelly sandwiches in class tomorrow. Can you send something in so that Fabio can participate?

Unlike the hundred of thousands of kids who’d die from it, it’s not the peanut butter that’s a problem for Fabio.  I have a special organic peanut butter with no additives that he loves.

And it’s not the bread. I make Fabio bread from cashew butter, eggs, baking powder and a pinch of sea salt. 

It’s the freakin jam/jelly that is the challenge.

I’ve been canning jams and jellies for competition for almost 20 years, so thankfully, I have a leg up on most folks in that area. And I can substitute honey for sugar in the recipes. The trouble is the fruit options.

Fabio can eat many fruits, but not the ones that make popular jams. He can’t tolerate berries, grapes, or apples due to their high natural salicylates and/or phenols. And what’s worse is…he loves them. If you put out a bowl of blueberries and a cake, he’d go for the berries every time.

When he eats these fruits, he is in heaven. Until the next day. And the five to ten days thereafter. Yes, you heard me. The effects far outlast how long the food was in his body.

It’s like a Jeckyl and Hyde thing.

He regresses across the board. Total loss of eye contact and any functional language. Very bad behaviors. Repeated tantrums. And it goes on for days! Of course, it’s never worth the moment of pure joy he had while eating the coveted fruit. And yet again…

Still, every 6-12 months a situation will arise when the temptation is too great. When heroic efforts would be needed to avoid the fruit. When just enough time has elapsed since the last time to let me forget how hard those several days of hell are going to be on all of us.

When you think that maybe… just maybe… this time it will be different because maybe… just maybe… he somehow outgrew this allergy.

So I stay up til 2 am making this gorgeous, ruby-red strawberry jam for my little man. And I bake him a fresh loaf of his bread and slice it a bit thicker so he’ll be able to spread on it without ripping. And I packed a little container of his peanut butter. And I crossed my fingers.

Sleepyhead walks in to the kitchen at 7am, sees the jam in his lunchbox, removes the container, and says very nonchalantly: “No thank you.”

Umm… No freakin way!!! I thought. And… with the look of daggers coming from my tired eyes as I replaced the container in the lunchbox… I said through gritted  smiling teeth:

“Mommy made you yummy jelly to make peanut butter and jelly sandwiches today at school.”

“No thanks.”  As he removes it again.

Okay, this is going nowhere. So, I give him a tiny taste. And in one instant a memory awakened inside him. And his green eyes widened. And he smiled. Big.

So he happily went off to school with the promise of more jam in his future. And I met him up there later to give him some enzymes to help him digest the berries. And he came home begging for more PB&J sandwiches…which I gave him… until the small allotted amount of jam was gone. And he was in heaven.

Until the next day when regression set in.

But I’m happy to say that it is less severe than it’s been in the past. He has more language now and has retained it. Eye contact is okay for the most part. The bad behaviors are only evident when demands are placed on him that he doesn’t want to do and even then, not as bad as before.

It gives me hope that my boy will someday be able to enjoy the simple pleasures in life.

Like fresh strawberries in the summer.

And maybe a friend to share them with.

Autism and the Tooth Fairy March 29, 2009

Posted by hopeauthority in Autism, Children, Family, humor, Parenting, special needs.
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There’s the autism world. There’s the real world.

There’s the bridge between the two worlds…that I imagine as one of those rickety, rotted, wooden suspension bridges with missing planks like you see in the Tarzan movies. Every day, desperate parents risk it all to cross over with their special kids. To bring them back from wherever it is they’ve escaped to. Back to the real world.

As if this isn’t hard enough to make sense of…

There’s also the fantasy world. Enter the tooth fairy.

Holy enamel, Batman! How do you freakin explain this concept to an autistic little boy? Do you even try?

Well, having a typical 11 year old who still sorta believes in all things magical..sorta…and who happened to lose one of her last few teeth on the exact same freakin day as Fabio lost his tooth, I had to face the fairy.

It has been about 2 years since Fabio lost his first two teeth in quick succession, so he doesn’t remember anything about the fairy coming. This particular tooth has been hanging on for ages, so I knew the moment was coming. When Fabio flashed me his winning smile yesterday morning, there was no denying that the tooth…suddenly laying down flat forward in a pool of blood …had to be “helped” out of his mouth. Gross, I know.

After priming him all day, Fabio insisted on falling asleep in his regular spot…our bed…and on making a “tooth samwich” by putting the tooth between two pillows. He and his tooth were moved to his bed. His sister fell asleep with her tooth under her pillow. The tooth fairy left her standard $5.00 bill amid a dusting of glitter under her pillow. (You know…fairy wing dust!) For Fabio, it was a bit different…

I heard him stirring this morning and quickly went into his room in the hope he’d settle back to sleep. I found him sitting up with a dollar bill in one hand and a Kooky pen in the other. Did I mention that Kooky pens are his absolute favorite thing in the world and he’d do anything for one? I thought I got him to lay back down for a bit, but, like a lightbulb had gone off in his head, he jumped out of bed, rounded the corner and, before I could stop him, made it to his sister’s bedside.

He snapped the light on, flung back her covers and turned over her pillow to reveal her haul. I know he thought he would steal her Kooky pen, but alas, she only had a five-spot. Yes he pocketed that anyway. And then he hit the lights and climbed into her bed for the first time ever and snuggled in for another hour of sleep.

So, he got it. Somehow, he made the leap from reality to fantasy. I don’t know who or what he imagined the tooth fairy to look like, or how he thinks she exchanged the tooth for the goods, but he didn’t freak over the concept of his tooth being gone or of the thought that someone or something came into his room in the night.

I think the key to making this a positive experience was the kooky pen. It was in making the reward something relevant and desirable for him. Just money would mean nothing to him…despite pocketing his sister’s haul.

Let’s hope the Easter Bunny goes as smoothly…

Share your own tooth fairy experiences here!

Autism and Stem Cell Research March 10, 2009

Posted by hopeauthority in Autism, Health, Parenting, politics, special needs.
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With a stroke of his pen, President Obama may have just untied the hands of the researchers who needed federal funding so that they may use embryonic stem cells to cure diabetes, MS, Parkinson’s… or even Autism. 

As is often the case, I again find myself in an interesting position when it comes to the impact of something in the mainstream media spotlight. And some people have asked me my opinion on the debate over not only the use of federal funding for embryonic stem cell research… but the use of embryonic stem cells themselves, regardless of the funding source.

You see, I am Catholic. I have a child with autism who could someday benefit from embryonic stem cell research. And I’ve also found myself with a handful of frozen embryos …with no interest in becoming an octo-mom. 

At the risk of over-simplifying things, I am glad we are getting past the moral/religious roadblock that is getting in the way of scientific/medical research which can cure millions of people. 

Some people may say I am not a good Catholic, or not Catholic at all. I see myself as a more “modern” version of a Catholic. (That’s what I imagine about 80% of the Catholics who are under the age of 75 to be.) I have rejected some mandates of the Church, but am a good and charitable person overall. I send my daughter to Catholic school, attend Mass when I can, and volunteer for many, many causes and events. It’s important to me that my son be able to make his Communion some day, even if I must become a religious ed teacher for special needs kids to make that a reality.

I don’t believe I am going to hell because I had my children through IVF (in-vitro fertilization) or because I may donate my frozen embyos to autism research or because my wearing of white at my church wedding was a questionable color choice. There are surely folks who disagree.

I feel that if God really didn’t want me to have children, he would not have created my brilliant doctor. Maybe I needed to overcome obstacles so I’d be strong enough to parent a special needs child. Maybe I would have taken motherhood for granted…as so many moms of typical kids unwittingly and naturally do… if it came easily.

My point is that maybe there is a greater plan than any of us realize when we first look at how our lives are going. Who is to say? Maybe the daughter I conceived through IVF will grow up to be the researcher who cures diabetes.  Maybe if I donated my frozen embryos to autism research, millions of children will be cured. Maybe my own son. Or yours.

Just as we all hope that the world will be more accepting and open-minded toward our special kids, I hope that people …maybe even the Church… will realize how important it is that we look at the bigger picture and the greater good that will be served from the federal funding of embryonic stem cell research.

Millions of suffering adults and children may someday be cured and saved by using the countless frozen embryos… that would otherwise be discarded … for research purposes.   Is is sad on some level that these embryos are not destined to be transferred into a ready uterus in the hope (not the guarantee) that they’d implant and develop into a viable child? Of course. But that is the reality. They are not going to be. You can’t mandate that the biological parents use them or donate them to another couple. So why discard them?

I do not choose to be an octo-mom. So what is to become of these embryos? Certainly not donation, for what other infertile couple would knowingly choose embryos that may have a genetic predisposition for autism. Am I the only one who sees research as almost a no-brainer option?

And as for the use of federal funds, well, our government is so quick to send money all over the world for all sorts of causes that, again…in my opinion… curing autism or diabetes with embryonic stem cells is at least as important as saving the freakin spotted owl in the yucatan, or whatever.

Although I am defending some of the actions I’ve taken which are contradictory to my faith, I love my faith. With the hand I’ve been dealt, it certainly would be easier to walk away from one’s faith than to stand by it. So, it’s obviously important and a great source of strength to me . I practice as I do rather than not practice at all.

I live my life… and encourage my children to live theirs …by first and foremost being good people who do the right thing. Always. Even when its difficult…especially then.  And do good things for others.

There is an opportunity for those children I will not be having to make a big difference in…maybe even save… the lives of millions.  Maybe save my son. Or yours. I can’t imagine God having a problem with that. 

How do you feel about the federal funding of embryonic stem cell research as a cure for autism and other diseases/disorders?

Sarah Palin: Special Needs/Autism Advocate or Savvy Speaker? September 10, 2008

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It isn’t often that I get to sit and watch TV… unless Noggin counts.  With autism, there’s always something to be done–no rest for the weary, as they say. So as I covered textbooks last week, I happened to catch Sarah Palin’s speech at the RNC.

And I was surprised by the effect five simple sentences had on me:

“Sometimes even the greatest joys bring challenge. And children with special needs inspire a special love. To the families of special needs children all across this country I have a message.  For years, you sought to make America a more welcoming place for your sons and daughters. I pledge to you that if we are elected, you will have a friend and advocate in the White House…”

What a mixed bag of emotions she dealt me with those words.

My first thought was “She understands my plight. She’s got my vote!” Then I wondered… if I really  believed her (and boy did I want to believe her!)… could I vote based only on one single issue? Sure there’s many out there who vote strictly based on one issue that they are most passionate about, like the right-to-life issue or the gay marriage issue.  But I think most folks (myself included) weigh the candidates’ positions on many issues before deciding who’ll get their vote.

I admit my next two thoughts weren’t very nice. I waffled between “What the hell is that baby doing out so late at such a loud, crowded, germ-ridden function?” and “She doesn’t have any idea– yet–how hard raising a special needs child will be”. It was almost like she hadn’t yet earned  the right to be our champion…like she doesn’t have the special needs battle scars yet.

Then I thought: Who am I to look a gift horse in the mouth? It’s not like there’s a bunch of other candidates with special needs children throwing us a bone.

Sure, I hate the price of gas, am worried about the economy, and have my opinions on the war. But we live with autism 24/7 and the toll it takes on the whole family. We need real help and real programs and more research to support our children and our families as a unit. And I worry that any progress that has been made could be cut back as a casualty of the economic crisis. So, it sure wouldn’t hurt to have a friend in high places.

Is the autism community at a point where we consider our cause to be the single most important issue in a presidential campaign?  Is having a “special needs friend and advocate” in the White House enough –all by itself–to warrant your vote?