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Autism: To Medicate or Not to Medicate? January 30, 2009

Posted by hopeauthority in Autism, Health, Parenting, Uncategorized.
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How’s that for a loaded question?

Anybody have “the” answer? Well, then, does anybody have the answer for you? I’d love to hear from you all.

I used to bring Fabio to a DAN allergist/immunologist from his 3rd birthday in March 2005 til December, 2006. He started Fabio on the diet, but also wanted us to follow a pharmacological approach, which I was resistant to. Everytime we went there, we came out with vials of injectible MB-12 and a stack of prescriptions. Prescriptions I just wasn’t comfortable filling.  It was worse right after a big conference. What was the new flavor of the month he’d prescribe? It was getting awkward to go back without having taken his advice. So… I stopped going back. (It also didn’t help that Dr. B…who must have been about 85 years old… looked like the crypt-keeper and had no rapport with my son.)

So, we started Fabio with a DAN chiropractor in September, 2006. We love the chiropractor and his holistic approach. He is a healer. Plain and simple. Fabio absolutely adores this man. There is a calm that comes over him whenever he sees him. A trust. 

I was never a believer in chiropractors before Dr. S came into our lives. In fact, I was a skeptic. But I believe now, because I’ve witnessed great things over the past 2+ years.

Enter the dilemma.

As part of the program at the HBOT center we’ve been going to since November, the center director strongly suggests that you see the DAN pediatrician they have on site on Thursday mornings. Our appointment was today…

Nice to meet you, Dr. E…partner of the crypt-keeper. Um, is anyone else here just a wee bit uncomfortable?

No, it wasn’t a surprise. I was tipped off when their office tried to get me to pay 75 cents per page to copy Fabio’s chart from Dr. B so that his freakin partner Dr. E would have the records to review at the HBOT office visit! I already had my own copy to provide Dr. E today. Thankfully, Dr. E. had the good sense to pull Fabio’s chart and read it before our visit…thereby redeeming himself in my eyes, as I had wrongly prejudged him a loser based on his staff and partner.

So the visit goes well. I like this Dr. E.

I like that …unlike his partner..he is a pediatrician, has a good way with special kids, knows and respects our chiropractor, is very knowledgable in a less pushy way. And he doesn’t look like he’s been embalmed.

Fabio definately has the mitochondrial dysfunction and inflammatory bowel to go along with his autism. This we know from testing. Dr. E. believes we should do some lab work and see if there’s more we can do to help Fabio be all that he can be…

I am on the fence. I am leaning toward doing the blood and urine tests since Fabio hasn’t had a battery of them run in quite awhile. But, after that, I am not sure. I certainly would never leave the chiropractor. Can they both work together though? I keep thinking about the old theme song to the “Odd Couple” TV show: “Can 2 divorced men share an apartment without driving the other man crazy?”

While I never say never, and I’d never judge anyone else’s choices, I really am so leery of medication, with its unknown side-  and long term-effects.  I am stuck at the uncomfortable intersection of  Traditional Medicine Blvd. and Holistic Way. Also known as “this medication may be all he needs to live a typical life (but he may not live a long one) ” vs. ” knowing I’m not doing anything that can harm him (but am I doing enough)”.

I am open to all opinions on the traditional medicine vs. holistic approach.  Why did you take the path you’ve taken? Are you happy? Do you have regrets? Have you “recovered” or mainstreamed your child? Have you found a compromise of the two approaches?

How do you sleep at night without worrying that you chose the wrong approach? Okay. That was a trick question. We all know that we don’t sleep at night any way…

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“A” Day Anniversary January 27, 2009

Posted by hopeauthority in Uncategorized.
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Five years ago today, Fabio was diagnosed with autism.

Can’t really say “Happy” before this anniversary, now can we?

I can’t believe it was five years ago that time stood still, that my ears actually stopped hearing momentarily, and that my whole world fell apart. And… whether right or wrong… my dreams died.

When I replay that home visit from the county’s experts in my mind, I am pretty unforgiving towards the naive mother that I was back then. I totally missed the knowing exchange of glances between the experts after they ran their tests. I felt confused by the slow delivery of the news from faces that looked like they were imposing a death sentence.

I don’t know if it was better or worse that they first called it PDD. What the hell was Pervasive Developmental Disorder? I’d never heard of it. But by the time they’d left the driveway, the internet had taken my breath away. How thankful I am now for those few extra moments of ignorance.  If they’d said “Autism” from the outset, my visions of Rainman would have induced an immediate breakdown. That came 4 months later with the MD diagnosis.

I was one of those moms who spotted something wrong relatively early. He was diagnosed at 22 months (and in therapy even before the second opinion arrived).  I acted on my suspicions quickly. But I was still not prepared for anything other than someone saying Fabio had a speech delay. And I was burying my beloved sister-in-law the next day. Surely, this was the lowest moment of a life filled with many awful, low moments.

I am amazed at how this epidemic has raged and that now….only five years later…everyone not only knows what autism is, but they probably know someone who has it.

He didn’t look when you called his name. He didn’t point. He didn’t even flinch when a loud bell was rung behind him. The handful of words he’d previously spoken disappeared in the night. After his MMR.

And so we began the longest journey ever undertaken. The one where there is no rest for any of us at any time. The days are full of therapy sessions and opportunities to teach which must not be squandered. The nights are merely a series of snippets of sleep, interrupted by our children’s night terrors or our own nightmares.

There is a sense of urgency everywhere…the idea that the window of opportunity for recovery or mainstreaming is closing with every chime of the clock.

There is the never-ending frustration of watching the passing of deadlines we never should have set for Fabio’s recovery. I remember thinking when he was still three and in intense therapy, that we had 2 more years…2 whole years…before kindergarten. Surely this whole “autism thing” will be behind us by then. But had we not set those deadlines, we would surely have gone insane. Our minds were just trying to protect us.  We were not ready to consider back then that this wasn’t going to go away. And we still aren’t.

Fabio has made the most incredible progress and I am so proud of how hard he has worked every moment of every day of the last five years. I am thankful for all the therapists and teachers and doctors who brought him back to us. And he is back. There is no sound sweeter than the little voice you’ve waited so long to hear and the infectious belly laugh of a happy boy.

When you look at it that way, maybe it is a happy anniversary after all.

Who is Your “Sue”? January 24, 2009

Posted by hopeauthority in Uncategorized.
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Today is the 5th anniversary of the untimely death of my beloved sister-in-law, Sue. On the one hand, I can’t believe it’s been 5 years already. On the other, it feels like 20.

Autism would not be that hard to handle if Sue was here. Maybe there’s a friend or family member in your life that is your “Sue”?

She was the glue that held my husband’s family together. She was married to the oldest of 3 brothers (I’m married to the baby). With nine years between Mike and my hubby, and Mike and Sue being high school sweethearts, my hubby can’t remember a time when Sue wasn’t around.

She was one of those fun-loving people, who simply loved children. Not just her own two, but anybody’s children. She had a magical way with kids. I’ve never met anyone like her. And she was like a big sister to me, which was especially important when I (an only child) lost my mom, then dad, before I had my children. Sadly, the middle sister-in-law has never been interested in or close to our side of the family.

When my daughter finally arrived, no one was more excited than Sue. No one did more for me than Sue. I had to pry my baby away from her half the time! I was so easy for me to eventually go back to work a few days/week, knowing my daughter was in the best hands.

Sue battled cancer for 4 years. She died on January 24, 2004…just missing both of her children’s weddings that March. Her first grandchild was born that June. Fabio was diagnosed with Autism the day before we buried her. She was only 49.

I am thankful that she lived long enough to know and love both of my children, though only my daughter will have memories of her. I cherish the memories I have of her holding Fabio when she was strong enough to do so. Actually, I cherish every single memory of Sue.

Our family is not the same without her. If she was alive, she would be here for my family and autism would not be so difficult. So I miss Sue every day…especially today.

If you have someone like Sue in your life…someone who you’d be absolutely lost without…I hope you’ll call them today and tell them how important they are to you and your child. And tell us your story so we can feel good about them.

People like Sue…the unsung heroes…are a priceless gift. Be sure to thank them.

Happy National Pie Day January 23, 2009

Posted by hopeauthority in Autism, Parenting, special needs.
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No, I don’t have too much free time on my hands.

I have celebrated National Pie Day for many years and I encourage all of you to partake in some pie today too. Do it for me.

I’ve noticed that my kids, both the typical and the autistic, the girl and the boy, like to help me when I bake. And since I have been a competitive baker for over 20 years..and consider pies to be one of my strongest areas…I love that they want to help me.

On National Pie Day, I bake pies to eat and to give away. Today, I will be teaching my Junior Girl Scout troop to bake pies at our meeting…and they are all very excited since none of them (except my daughter) bake at home. Pie-making is becoming a lost art…and it’s time we change that!

We eat pie for breakfast, lunch, dinner, and dessert on Pie Day. There’s pies, tarts, quiches. Dessert pies. Pot pies. Shepherd’s pies. For the lamest and laziest, there’s even pizza pies.

My challenge for you all today: If you are able to, bake a pie with your special needs and typical children. If it just won’t work out for today, plan to do so at a better time soon. Then buy a pie and eat it today. Or buy one and give it away if you’re dieting.

Trust me on this one. It’s a sweet deal any way you slice it.

The Richie Reader Awards…from Hell, of course January 22, 2009

Posted by hopeauthority in Autism, Children, Parenting.
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Well, we’ve established that birthday parties can suck. Problems when your kid gets invited and problems when he doesn’t. But there’s another area that gives birthday parties a run for their money when it comes to potential for disaster…

Awards ceremonies.

Some background… before the rant: My son’s elementary school has a program that’s been around longer than 25 years called “Richie Reader” program. Starting each September, every kid in the school is encouraged and expected to participate and read more books than could possibly be devoured by the nerdiest of bookworms. (To date, over 59,000 books have been read this year.) Log sheets are filled out of all the books read and are signed off by the parents. Then they’re converted to stamps on giant tally sheets along the hallway walls. Legions of PTA volunteers work countless hours keeping track. Mega-long year end award ceremonies involve trophies and ribbons and pomp and circumstance. Monthly award ceremonies are held where each class sends 2 reps to be called upon to go on stage and shake the hand of the most frightening mascot this side of Tokyo: Richie Reader.

Wanna guess who the rep was in Fabio’s class for today’s monthly ceremony?

This Richie Reader mascot is freakin scary. No two ways about it. I swear there were 5th graders whose knees were quivering at the thought of approaching this thing awaiting them on stage. I don’t know if he is an alligator or a dinosaur or a dragon. He’s green, with sharp white teeth, an alligator-type mouth agape, and terrifying, flaming yellow eyes (where the whites should be).

He looks like what you’d get if you crossed Dorothy the Dinosaur with Godzilla. Then embalmed it.

So we go to this noisy, over-crowded event. Listen to the BS speeches. Marvel at how nicely Fabio is sitting in his seat right up front. Video camera ready. Two proud parents to support him… Enter the dragon.

Fabio’s name is called, thankfully in quick succession with the rest of the 1st grade reps, who dutifully and quickly fill the stage. Where is he?

Still in his seat. That’s where.  Right where I expected him to be. And there was nothing dear enough on the planet that could have been offered as a reward for going up on that stage at that moment. I’m amazed he didn’t flee the scene, frankly.

Yep, that video footage is gonna be lots of fun to watch over the years. Should’ve used the tape from last summer’s end of the year Richie Reader ceremony… where his aide carried him up on the stage with him hiding his face in her boobs (smart kid). Or maybe his pre-school graduation… where he wouldn’t go onstage for his diploma…or wear the doofus cap either.

For a “ham”, he is amazingly anxious and shy at such events. And I don’t blame him one bit. But I just hate these ceremonies. With the tape rolling, I keep thinking  Maybe this will be the time he goes up there.

With that monster waiting in the wings for his approach, I doubt his time will come any time soon. Someone should just slay it and make it into something useful like a pair of shoes and a bag.

That thing is just scary enough to make a kid choose illiteracy.

If Autism Went to the Inauguration January 20, 2009

Posted by hopeauthority in Autism, humor, politics, special needs.
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Well, today’s the big day. The long-awaited changing of the guard. All the drama of the train ride to the capitol, the rock stars and celebrities, the almost poetic set-up of Martin Luther King Day on the eve of this historic event…

It’s the inauguration of the man who promised to help families with autism. (Did you think I was going to say it’s historic because he’s the first president who’s part African-American? Please…that point’s been beaten to death. Time to move on to the issues.)  

Everybody who is anybody will be there…

What? You’re not going? Well, why the hell not?

Oh, we’re not going to play the “autism card”, are we?

Come on. Washington DC is only about 6 hours away from here. If we factor in the crowds, maybe its 9 hours total. Let’s all pretend we’re like regular American families today and throw the kids in the car and head off for the inauguration. We can cheer “Yes We Can” all the way there.

I can see it now…

After 9 hours in the car, the kids will be so excited to be able to get out and stretch their legs when we finally arrive in DC.  Wait a minute…is that MY boy running full speed across the White House lawn? (Gee, I’m so sorry Mr. Secret Service man. Please call off your snipers…)

Yep, I’m just gonna freshen up in my $5,000/night fancy hotel room for a moment. (That’s just a drop in the bucket for the average American family with autism, ya know.) Um, Mr. Conceirge, what do you mean the satellites are jammed and you can’t get Noggin?

Okay. Don’t panic, just let me think a minute. Food. Yes, food…that’s what we need. How about some room service?  Look, your freakin brochure said you COULD accommodate a GF/CF diet!

The swearing in should be interesting. No you can’t color in THAT book, honey…it’s Mr. Lincoln’s bible and the President won’t share.

Just think how comfortable they’ll be in a crowd of only, uh, 2 million strangers…Don’t touch that man. Its snowing, put your hat, gloves, coat and shoes back on. Don’t touch that man. Why are you covering your ears, honey? Don’t. Touch. That. Man. 

Glad I rented that little tux for the occasion. I know the tag bothers you, honey, but you really can’t go to the Inaugural Ball in your standard bare feet and underwear.

Shoot. I never get to dress up and go out. Do you think its ok if I wear the last fancy dress I bought to the Ball? Apparently not…The 90’s called. They want my dress back…

Look, I really wanted to go to the Ball. Hey, maybe I can find a sitter. There’s only 2 million people in town. Surely one of them has a Master’s in Special Ed, is trained in ABA, PT, OT, Speech, Sensory, Floortime, PECS, and has knowledge of the GF/CF diet, lives to change diapers, has lots of hugs and kisses to spare, the patience of a saint and a clean background check. Well…maybe not.

Even in a crowd of 2 million, autism would feel alone at the Inauguration.

If I want to feel alone, I can just do that every day at home. Better start unpacking the car.

Let’s hope that change really is coming…

The Punch Heard ‘Round the Neighborhood January 17, 2009

Posted by hopeauthority in Autism.
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Ya know when you’ve really reached the end of your rope? The last nerve? The final straw?

I’m talking about the absolute end at the edge of the cliff where you’re hanging over this black abyss and are ready to jump. You are at the point where you just want to scream and punch something.  You have had it. Had. It. 

But something happens to pull you back from the brink. Maybe the scream gets out, but the punch doesn’t. It just never gets out. And when you calm down, you wonder what it’d be like if you ever really just let it out. And the thought scares you.

I’ve been there. Often.

But not today. Nope. This morning started out with such promise. Lots of fun things planned for the family…which is rare for us. Starting with my hot shower.

Then in a split second… dumb ass me put my fist through the bathroom window. No fist of fury. Just a sleep-deprived mom in a drafty bathroom attempting to coax a frozen window open so I could see if the storm window behind it was closed. Can anyone tell me what the hell I was thinking by punching a frozen glass window? Anyone at all?

Fast forward ahead to the horror movie scene that ensued. Wrist gash hits a vein. There is no way I am going to the hospital. Somehow I am going salvage my day’s plans without adding any white coats to the picture. And I want my freakin shower too.

Sometimes it really is all about who you know. Like my cousin the plastic surgeon who lives about 5 minutes away. And happened to be home. So I took my shower. Yes, I took the one-handed shower first.  And got my bloody wrist over to the “Dumb Ass Free Clinic” for some quality medical care. Some surgical super glue and I was ready to roll.

I couldn’t help but think about how I would’ve been interrogated by hospital personnel if I’d have had to go to the ER today. I probably would’ve been subjected to some kind of psyche evaluation too. And who knows how the heck that would’ve gone…  So I am very grateful that I avoided all that drama.

But I feel jipped too…

I can’t believe I punched my hand through a pane glass window by accident! All those times I imagined doing something dramatic like that to release the tension of any number of stressful moments…but I held back. 

Really, you’d think that all that blood and glass could’ve been put to better use.  I feel like such a doofus.

So, the question is: In your most sleep-deprived moment, what “dumb ass” thing did you do?

Introducing My Son, “Fabio” January 14, 2009

Posted by hopeauthority in Autism, Children.
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Okay. I ‘ve been wrestling with the whole “what do I refer to my son as” dilemma from the time I started this blog. I know that many bloggers post photos and use real names of their kids. I so want to be that open, but I’m just not quite comfortable enough with the idea.  Some make up names and others just use initials, like I’ve been using “C”. 

Maybe it’s my background as a lawyer. Maybe it’s my cynical nature as a New Yorker. I’m just very protective when it comes to my kids and I worry about the weirdos in the world. And, truth be told, my techno-challenged self couldn’t figure out how to upload photos if my life depended on it anyway…

But every time I refer to my boy as ‘C’, it bothers me. I mean, my kid has a name. So I’ve decided to use one of the nicknames we have for him. There’s “Little Man”, but a fellow blogger uses that and I kinda see her boy as little man now. “Monkey Boy” was an option… for the reasons I’m sure it’s a popular choice among autistic families. And his fondness for sunglasses has earned him the title of “Hollywood” around here.

But the one nickname that stands out most is the one I’m going to go with here…Fabio.

My little man is gorgeous. Really.  Being so cute … and using that to  his advantage (which he has already learned to do) will serve him well in life. He has always had long beautiful hair and strangely, he is aware of his hair and when he’s due for styling by “Haircut John”. He is a flirt since birth.  And…he loves to look at himself in the mirror. Or the doorknob. Or anything that gives a reflection. He is almost obsessed with himself and his looks.  It’ll be obnoxious when he’s 16, but it’s cute as hell at 6.

I’d love to hear what nicknames you’ve given to your little ones and the stories behind them, if any.

A 12 Word Sentence…and no curses. January 11, 2009

Posted by hopeauthority in Autism, special needs.
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‘C’: “Hey Mom, can I have a big piece of that bread, please?”

Me (mouth agape, then recovering enough to leap from my chair, scoop him up and run toward his coveted loaf): “That was great asking honey! You can have the whole loaf if you want!”

Then, six big slices later, and as soon as I sat back down… He says: “Hey Mom, I’d love some big drink of cold juice. Please Mom.” So, I again leapt into action. Which incidentally, pretty much wraps up my aerobics for the day…

Since November, we’ve gone from an average of 2 or 3 words to convey a thought…to about 7 words in December…to 12 words today.

Of course, I want to believe its the excessively expensive HBOT that is responsible for this transformation. And I am aware that today’s lengthy utterances could just be a fluke. But it is  progress.

Undeniable progress.

It’s not like I am in the habit of counting his words. It’s just that it really is noticeable when the length of a typical sentence jumps like that… so noticeable that you actually stop in your tracks while your brain replays the sentence and counts off the number of words used… as if in some kind of word-check mode. 

This has been a long time coming. In the early years, one of my biggest worries was that he’d never speak. His therapist was always careful not to promise me anything in that regard, despite my repeated attempts at reassurance. It drove me crazy back then, but one day…about two years into his speech therapy…she told me she was comfortable in saying that he would speak. That it was a delay. A long one, but a delay nonetheless. And she was right. (Thanks Kathy!)

So to all those parents still waiting for words…or waiting for sounds..or waiting for echolalia to be replaced by regular speech, I want you to know that in many cases, it will eventually happen. It seems like it never will come when the therapists are working so hard just to get the letter sounds “A is Ah. B is Buh…” But they really need to establish those building blocks first.  And it’s hard to keep the faith as the years keep rolling by. And it’s hard to keep waiting for that first spontaneous “I love you.”

I promised myself in the early days …when all those parents of typical children would try to cheer me up by saying I’d be telling him to “be quiet” soon…that I’d never tell him to “Be quiet”. And I won’t…

Not even when he curses…

But I do hope he doesn’t start stringing those phrases together like some kind of George Carlin routine…

New Autism Diet: GF/CF… and B/F? January 8, 2009

Posted by hopeauthority in Autism, Health, Parenting, special needs.
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People think I’m crazy. They do.

When I explain the diet that ‘C’ has been on for almost 4 years…the Specific Carbohydrate Diet…I always get that same slack-jawed, glazed-over look. It is because SCD is like GF/CF on steroids!

He has no gluten…in fact, the has NO GRAIN AT ALL. No dairy. No sugars…in fact, no sweetner of any kind except honey. No yeast, soy, corn, flavors, colors, dyes, preservatives, yada yada. Nothin. Surprisingly, he can have nuts and eggs. But he can’t tolerate legal SCD foods which are naturally high in phenols and salicylates either.  It’s a bitch. But it’s worth it.

But this post is not about that… Its about Delthia Ricks’ article on page A4 in Newsday yesterday.

Are you wondering what “BF” stands for?

It’s for Bug Free… BUG FREE! (Yes, I just said freakin BUG FREE!)

Would you believe that food manufacturers are allowed to use bug-based dyes in our food, drink, and cosmetics and merely label the dyes as “artificial color” or “color added”!  Better think twice before guzzling that ruby-colored grapefruit beverage you love for breakfast. Or feeding your kid some popular brands of yogurt.  Or even kissing your mother with that mouth.

Apparently, it will take another two years before the food industry will be required to disclose on its ingredients labels an extract made from the crushed wingless beetle-like creature known as a cochineal. Two more years.

Now, I consider myself to be a pretty damn savvy label reader. And my gut can withstand the most fiery, spicy food. But the thought that we have been allowed to consume pulverized bugs …and that we’ve unwittingly fed them to our potentially immune-challenged children…is enough to make me toss my tacos.

Really….Would anyone KNOWINGLY ingest bugs? I bet the people who make that stuff don’t eat their own products! And it has no nutritional value.  It just provides lovely shades of red, pink, orange and purple to your food and cosmetics.

But it gets worse. The Center for Science in the Public Interest petitioned the FDA in July 1998 to create a new labeling rule regarding this bug use because some people had suffered severe…even life-threatening… allergic reactions after consuming or using products containing the bug-based dyes!

11 YEARS of potentially life-threatening allergic reactions… well, make it 13 by the time the new law takes effect. WTF?!

Some companies already list the dye, but not using words that would be a red-flag…or a Black Flag!… to the average label reader who doesn’t have a bug-ology degree. So here’s what you need to watch out for if you want to avoid consuming dead bugs:

  • carmine
  • cochineal
  • E-120

Is it any wonder that people are starting to consider that in some children there may be a link between autism and diet? Do we really need to color our food or our lips with crushed Peruvian beetles?

And most scarily, what other petitions about other dangers impacting our autistic kids are sitting around in the FDA…that we won’t learn about for another 11 years?

It makes my skin crawl.

Oh wait…it was just a Peruvian cochineal.