Friday, January 30, 2009

My two faces of autism

There are a lot of bloggers and parents of autistic children who look to celebrate their autistic children everyday, and want to tell and show the world how wonderful their kids are, and to choose to look at the gifts that they offer instead of the disorder that they are burdened with. These parents want to offer their voice to speak in support of autism—the fight for its existence, acceptance and its sustainability.

I understand this attitude and this activism. And, personally, I do embrace autism and all of its colorful puzzle pieces to a point. I embrace Nick and his disorder and want the world to know just how special he is because I believe he is special and great—just like you believe that your child is great. So, I’m here to say that I’m standing right there beside you—like-minded parents—who want to promote autism as a positive movement and stop judging it as a negative one for the sake of our high functioning autistic kids and their fragile place in this world.

I can say that I get it, I do. They are our little gifts in life more precious than most and who hold a very warm spot in our hearts, and the hearts of others who have the privilege and open-mindedness to get to know and embrace them.

However, I also represent, respect, and understand the other side of autism that we call: Hell.  For those of you who understand what Hell is, because not all of you do. Whether you like to hear it or not, there is this side to the disorder and it’s often hidden from the world. It’s a sadder, scarier, exhausting and, frankly, a horrific side to the disorder that you know as severe or low functioning. It’s a perplexity that I’m still trying to wrap my brain around and understand, even after 13 years. It’s autism at its worst and I’m not choosing to celebrate it. Not a chance! It’s a side that few people actually get to know, try to understand, or accept because they give up before they can even try and have to institutionalize their child at the tender age of 5. It’s autism at is worst—an evil, hell, devastating, and heartbreaking. And don’t tell me to stop and look on the bright side, or be positive, because there is no brighter side to this side of autism. Trust me, I’ve spent time searching, begging and pleading that there would be a brighter side, at some point, someday; because how can a parent allow herself to feel this way?

A severely autistic child, like Meghan, is not a child, like Nick, who has high functioning autism, and a child you can mainstream into classrooms, and show off in public places without worry or incident. A severely autistic child cannot be mainstreamed. She is not a child you can trust to play in the yard without running off; to trust with a toy without breaking it; to trust to use the bathroom without playing with her feces—even at 13. She is not a child you can talk to and have a conversation with, or to get to know her precious little thoughts and teenage secrets. After 13 years I still don’t know  Meghan’s favorite color because she doesn’t understand the question. Children like Meghan cannot connect, speak or relate easily to you or to me—her mother—or to even speak those precious few words that we all wish to hear: "I love you, Mommy," or even "Mommy" would suffice. I’m still waiting. I’m still waiting to hear her voice. It’s autism at its worst, and I know it just as much as I know autism at its best.

Harsh? Maybe! But it’s true. But I also want to say that it’s okay, too. It’s okay to feel this way. It's okay not to pretend that everything is okay when it’s not. To allow yourself those fleeting moments to feel hostility instead of happiness.  To feel dread instead of hope.  To want to condemn autism instead of celebrating it, because it’s real, and it’s raw and it's hard. And it’s hidden from the world because, frankly, people want to see the hopeful side of autism.  The prettier side. The acceptable side.  The side that we want to show off, celebrate and promote to the world with open hearts, because it makes us feel better.

Wednesday, January 28, 2009

Miles for Miracles…Boston Marathon Run

Please help sponsor a friend running in the Boston Marathon… You know the “run,” the arduous, 26-mile trek from Hopkinton to Boston….Her goal is to raise $10,000 and will specifically support the Children’s Hospital Autism Language Program, a unique program focused on enhancing the communication of children with autism and improving their quality of life. So far she has raised almost $2,000 and needs your help... so spread the word..

Please read more about Christine Carlson and her “Miles for Miracles” Boston Marathon run.

Read more about the Autism Language Program:

Good luck, Christine… you are an inspiration!!

Miles for Miracles…Running for Autism…

Please help sponsor a friend running in the Boston Marathon… Her goal is to raise $10,000 and will specifically support the Children’s Hospital Autism Language Program, a unique program focused on enhancing the communication of children with autism and improving their quality of life. So far she has raised 2,000 and needs your help... Spread the word.

Please read more about Christine Carlson and her “Miles for Miracles” Boston Marathon run.

Read more about the autism language program:

Good luck, Christine… you are an inspiration!!

Tuesday, January 27, 2009

My son gets all As and Bs, but he won’t graduate from high school

Every quarter Nick and I are invited to a special “Honor’s Breakfast,” a breakfast hosted by the school in honor of the kids who make the honor roll.

My son has made the honor roll every single quarter since he started middle school--two years ago--because he gets As and Bs on his report card--and he’s in a special needs class.

A Special. Needs. Class. Don’t get me wrong, I’m always proud of him, and, lately, I’m proud of the fact that he has taken an interest in reading his own report card and noting the good grades and the few comments some of his teachers have written about him in the special comments section.

I’m glad that he does well in school and that he knows it, too. But my problem is this:

Since he’s in special needs and that he does not follow the typical curriculum, but, instead, a modified curriculum designed for him and for his needs--then what is the actual measure used in grading him?

I already know the answer to this question. There’s no measure. He is not at the top of his class because he is not competing with his class; he's receiving good grades for simply doing the work given to him and learning the information at his own pace. He receives a good grade for simply moving forward and, well, learning.

And of course I’m very proud of him for this and for his quarterly achievements--even if it’s not based on the same academic performance and measure of his typical peers… And I will always be proud of him for whatever he works hard for and achieves; I tell him this all the time, because I know it matters.

But what I do worry about is that even though he’s doing well and receiving good grades based on this modified criteria, he will not meet the requirements to graduate from high school. That is: he will not wear a cap and gown and walk to the football field or march through the gymnasium to partake in the ultimate celebration of his life--and receive his diploma--the very same diploma that demonstrates his years of hard work and achievements. In other words: he can attend quarterly honor breakfasts and chew down some donuts, cupcakes and bagels, but he won’t be attending a graduation--or a “congraduation,” as he calls it.

Ironic, isn’t it?

The biggest problem is that he knows all about this “congraduation” and that one wears a cap and gown on their “big day”; a day that I believe he’s looking forward to just as much as he’s looking forward to finally leaving school, but I don’t have the heart to ask. It’s actually funny because I joined Facebook about a month or two ago and one of my classmates from high school found an old picture of our high school graduation ceremony. It was funny to see, but not all that fun for me, because I know that my son will not have one of his own to look back on, some twenty five years later, or to simply remember the day fondly.

And I would love to show him this picture because I know how tickled pink he would be to see an old school photo of me, especially at my high school graduation ceremony and all decked out in my cap and gown …for my congraduation…

But I can’t bring myself to show him the picture.

Btw: I'm third in from the left, front row.

Saturday, January 24, 2009

Lack of common sense or lack of interest? About 8 year old autistic girl arrest

I’m sorry but have you seen Common Sense? I can’t seem to find it out there and frankly it has me scared to death for my autistic children.

I could so easily be talking about a lot of the headline news; sometimes it’s just enough for me to suck down my morning coffee without chocking on the latest heartbreaking news. But, today, I’m primarily focusing on the backlash of last week's story of the 8-year-old girl with Asperger syndrome (AS) who was arrested and sent off to be charged with battery (later dropped).

Children with AS usually do not have intellectual disabilities and, therefore, are more easily mainstreamed into typical classroom (sometimes not so easily) -- and sometimes require an aide for classroom support and behavior modification. Apparently, the teacher in this little girl's school didn’t understand autism and some of the behaviors associated with the disorder (or at least didn’t appear to) and, in this case, the child may have exhibited sensory issues: the child wanted to wear her hoodie (hooded sweatshirt) which was also a cow outfit and the teacher wanted her to remove it and the child became behavioral and started hitting the teacher. Now I don’t like hearing about this sort of situation anymore than anyone else who has autistic kids--because--for some of us--it really does hit home and it’s upsetting and scary as hell. But as I was looking further into the opinions (commenters) of the story, I noticed that “some” people believe that the teachers had no choice in the matter, as in saying--the teacher and school did the right thing, and then had some harsh words for the child.

Clearly some people don’t understand autism, but do you really have to understand autism to know that it wasn’t the right thing to do?

I was stunned that someone would even think that having the child arrested was actually an option -- but then again, the school officials and the teachers also thought that it was the “only option” or “right thing to do” or “protocol” or “by the book.” I don’t care how you say it. And to further stun those with actual common sense, the child was charged with battery -- an underage 8-year-old autistic child who weighs 50 pounds. And let’s not even start to identify the emotional trauma that she might have walked away with after, um, leaving jail…. So let’s recap: 8 year old who doesn’t completely understand the world around her was taken away in handcuffs by police officers (who also like to “work by the book”) and whisked away from the only people she knew and probably not knowing if she would ever see her mother again …

In this abc news article the child’s mother said:

"She started screaming 'Mommy, I don't want to go! What are batteries? What are
batteries?'" Towry said. "She didn't even know what she was arrested for."

And back to the fact that this child weighs, what -- just about 50 pounds -- could even be considered a threat to grown adults and would warrant such treatment.

A very interesting fact about an incident like this is that it has happened before....

I certainly understand that business and organizations have rules to follow; hell, one of the assignments that I had last year was to write a Policy and Procedure manual for a new business… so I am one who knows, understands and appreciates why there are rules to follow and procedures to carry out… but in this case?

And furthermore, rules are designed in black and white … there’s no grey area or when and where to follow good judgment and some good, old fashioned “common sense?”

Perhaps the use of common sense should be enforced, too.

Or perhaps it’s not about common sense but simply not wanting to deal with the child with special needs--an “undesirable” student? From the information that I found in Writeslaw website, (special needs advocates) this seems to be the schools way of thwarting their responsibilities of ‘dealing with kids with disabilities.” I’m not a lawyer, but if you are, please weigh in your thoughts.

Let me just say that if Nick was taken away in handcuffs because he yelled at the teacher or shoved someone because they made him mad (which could easily happen--his emotions have a way of getting ahead of him, and, since communication is lacking due to his "disorder"...) being arrested would ruin him (and for a mistake) and he would have a very hard time recovering from such a trauma ...

And you all know that Meghan has hit and shoved her teachers before, but the teachers and school officials know this as a behavioral issue due to her disability and lack of communication skills, they would never have called the police... Nonsense. Instead, we found her a new school with teachers and staff who are trained to handle her behaviors and help her... Not ruin her.

We want to help kids, not ruin them..

Feel free to share your own thoughts about this situation?

Here is the full story from ABC News

Friday, January 23, 2009

Kids' Update...

As you might know I have not spoken of Meghan in a few weeks… that is because all is boring on that side of the great kid divide.

What I mean is: Meghan is doing wonderfully. Really. She has a good and consistent life (home and school) and she’s comfortable. At school she has a daily calendar of schoolwork (Which she loves—now how many kids love to do schoolwork?—she’s going to be a genius when she grows up!!) and then she has activities, special programs and she goes swimming twice a week. And when she goes to her “house” she does more (request) schoolwork, colors, and plays a game with one of her favorite friends…Oooh, did you hear that? She has a friend… It’s funny because when I receive a weekly call from Meghan’s assigned house teacher, she tells me that Meghan is the most social student (at least of the 8 girls at the house). It brought me back to when she was four (two year after her “severe end” autism diagnosis) and we were seeing a neurologist at the Ladder’s program in Mass. and the doctor said Meghan was special from the other (severe) autistic kids she knew because she said Meghan is “social.”

And it’s true, to a point. She is not what I would call a social butterfly; looking to entertain kids and people around the clock… but she has always been willing and able to acknowledge people and work for their attention— positive or negative, either one—she doesn’t care; she is not looking to please anyone but herself. If you think about it, isn’t that the way of a well-adjusted person? Looking to seek pleasure from others, but not willing to give a piece of yourself for the sake of others. It’s the attitude of a well-adjusted person, but not necessarily a person who would keep a lot of friends. Interesting, isn’t it?

On the other side of my kid divide is a boy who sits on the opposite end of the spectrum (high functioning) and could attract so many kids if he were…well…social. Just a little social; a small chapter from Meghan book is all that I would ask for; to balance his willingness to please with some social skills and an interest in other kids--of any kind, would be a great gift—for him. And maybe a little bit of healthy work ethic to go along with it, too. He hates school and work (unlike Meghan) and as of late, he told me that his aide gives him the answers to schoolwork—how about that for honesty!!? Ugh. And do I know this boy of mine—his handsome face, nice personality and cunning gets him everywhere!

Perhaps in time and if they hang out together when they’re grown adults--there’s hope, right?-- they would make the perfect dynamic duo (like Batman and Robin): with his ability to retain friends at a single bound, and her ability to attract them like no other…Wow, they would conquer the world and set out to new sites and actually leave the bat cave and live a life of solidarity and less solitude!!

Ahhh, a mom can only dream… and I’ve got comic books on my brain.

And at this very moment I am awaiting Meghan's return home for the weekend--loaded up with her favorite snack foods... and we will take in a day of sledding--her favorite! And I have a smile on my face... see

Happy Weekend to you too!!

Thursday, January 22, 2009

What's Nose Hair, Mom???

"What’s nose hair mom?”

Ugh!! Here we go again! I know how this conversation will develop… Let me just explain about Nick and hair-- if it’s not on his head, he doesn’t want it. He still stares at the one chest hair that he barely has and wants to shave it…and let’s not even mention his legs and, um, another place… so let’s take this ride together, shall we…? because you're coming along too... too bad, don't complain!!

“Everyone has nose hair, Nick, it’s normal.”

“But I have nose hair see…” (Nick demonstrates a finger and a turned up nose in my direction. If he wasn’t my son I would have to say Ewww, here….)

“Yes, you have nice nose hair, Nick!”

“I don’t have to cut it?”

“NO, see I have it too.”

“Only men who get really old have long nose hair?”

“Yes.” (If I were to guess, he is talking about his late great-grandfather who died over 5 years ago … and was 93 and had grey nose hair…and, apparently, "problematic" nose hair, too!)

“And they have to cut it?”

"Sometimes." (Oh, no, was that a concrete enough answer?? Try that again…) “Yes, they have to cut it if it gets long…” (I can’t believe I’m having this conversation…I will crack a beer now… You can crack a beer now, too, if you want, I won't blame you..)

“Why do we have nose hair?”

So we looked up all of the functions of --- nose hair --- (interesting! read here for your nose hair reading enjoyment, too!! It's only fair!!)

What! Satisfied? Wow. No obsessing for hours about nose hair, or chest hair, or hair growing in odd and “all” places…. But I just cracked a beer and am ready!!
Oh wait, he’s coming back…

“Should I shave my legs like you do, Mom?”

“Absolutely NOT!”

“Only girls?"

“Yes, only women shave their legs…”

And he was off...
That was it. Nice and easy. And he’s satisfied…

But what's he shaving!!!??? Do YOU want to ask??

Go Ape during February Vacation Week, in Massachusetts

Help Little Joe Celebrate His 16th Birthday During February School Vacation Week
Franklin Park Zoo Plans Special Activities for “Go Ape Week”

WHAT: Set off on a tropical excursion during February school vacation week - bring your family to Franklin Park Zoo for an ape-themed getaway! Little Joe turns 16, so Franklin Park Zoo will celebrate his birthday all week! Activities include:

  • First 25 visitors per day receive a special gift
  • Sign a large birthday card for Little Joe
  • Enjoy gorilla-shaped birthday cake (on Monday, February 16)
  • Opportunity to participate in a variety of creative and educational ape-related activities
  • And, many other surprises throughout the week! .
WHEN: February 16 – 20 11AM – 3PM (Go Ape Week activities happening every day!)

Monday, February 16 11AM; Enjoy complimentary “gorilla” birthday cake by Montilio’s Baking Company

TICKETS: Events are free with regular paid admission
Franklin Park Zoo Admission: $12.00 for adults; $7.00 for children 2-12; children under 2 are free.

WHERE: Tropical Forest, Franklin Park Zoo , One Franklin Park Road, Boston, MA

Autism Insurance Reform, Note from Autism Speaks..

Dear Massachusetts Autism Advocate:

Autism Speaks is pursuing autism insurance reform in over twenty states across the nation, including Massachusetts.
Last week, an autism insurance reform bill was introduced in the General Court of the Commonwealth of Massachusetts. The bill, sponsored by Representative Barbara A. L'Italien (D-42) and State Senator Frederick E. Berry (D-7), will require private healthcare policies to provide coverage of the diagnosis and treatment of autism spectrum disorders. The autism insurance reform bill will cover applied behavior analysis (ABA) and other medically necessary, evidence-based treatments prescribed by an insured's treating physician or psychologist. Autism Speaks is partnering with AFAM (Advocates for Autism in Massachusetts) to ensure passage of this crucial legislation.
There are currently eight states that have passed similar bills across the country, including five states during last year's legislative season: Arizona, Florida, Louisiana, Pennsylvania and Illinois. This legislation will position Massachusetts to be one of the next groundbreaking states that provides access to treatment for families dealing with the challenges of autism spectrum disorder.
Your help is needed to generate support for the autism insurance reform bill from your Massachusetts representative. Note that the deadline for co-sponsorship is February 4th, so please reach out to your state legislators now...
1. CALL YOUR STATE LEGISLATORS. Find out who represents you and their phone numbers here.
2. SEND AN EMAIL TO YOUR STATE LEGISLATORS. We encourage you to take the opportunity to personalize the e-mail before you click send. You can do so in the box below our letter.
3. STAY INFORMED Visit the Autism Votes website and sign up today to receive alerts and information pertaining to the autism insurance reform bill.
4. FORWARD THIS TO EVERYONE YOU KNOW A far-reaching grassroots effort will be crucial to the success of this legislation. Reach out to those who have asked how they can help by asking them to support this bill. They can show their support by by contacting their Massachusetts legislators and by registering for action alerts at
For more information on the autism insurance reform initiative in Massachusetts, visit
Warm regards, Judith UrsittiRegional Director of State Advocacy Relations Autism Speaks

Wednesday, January 21, 2009

Social Group for Kids with High Functioning Autism on South Shore of Boston

I am still looking to start a group for kids with Asperger's Syndrome or high functioning autism on the South Shore (south of Boston). I've noticed that there aren't many --or any, rather -- social groups in my area for Nick to enjoy.

As you may know, kids with autism have trouble making friends and being in social settings--and Nick is no exception. I'm not sure about your child, but Nick doesn't have many friends outside of school to do activities with or to meet up, so I thought that starting a group of friends (on the south shore) might be a great idea ...

Leave a comment or send me an email if you are on the south shore and have a child with high functioning autism, and are between the ages of 6th grade - high school (Nick's in 8th grade) and wish to do fun activities together (start a social group): go bowling, rock climbing, arcade, ice skate, ski ... etc..

***Update*** So far about 3 moms have emailed me, some are also interested in a mom's dinner night out!!

Tuesday, January 20, 2009

First Hundred Minutes...Let's hope not

My son doesn’t understand satire. But that doesn’t hold him back from enjoying his MAD magazines. He loves it. He loves that they spoof a superhero or two throughout the magazine, and in almost every issue, too. Whenever he runs to the mailbox to get the mail, I know that he’s eagerly awaiting either a Netfilx movie or his MAD. And when he does get his monthly issue, he runs to me to show me what’s so funny this month.

I know it as satire and laugh at what I see; a totally different reason than why he laughs and what he sees. And this months edition was no different: It’s titled: “Ohama, The First 100 Minutes” and has three cigarettes hanging out of Obama’s mouth—just to say the least.

Of course Nick found it hilarious just the same--the cigarettes, that is. And not really understanding why Obama is parodied looking disheveled, sweating profusely, eyes bloodshot, aspirin and Pepto Bismol running amok -- “You know cigarettes are bad for you!!” he says of the scene. “And he has three in his mouth and two ashtrays full” laughing along amusingly. And, of course, the whole cartoon of Obama looking -- well -- just hilarious is enough to tickle his funny bone.

I do try to explain more of what is funny about the picture. The truth. The politics. But I think some things are better left for the adults who understand the complexities of the world—not for innocent boys like Nick. I do smile at his enjoyment and his delight of the magazine as a whole. And I do wonder, as he reads cover to cover, if he’s getting the message—if just a little bit. Perhaps in time and after a few hundred MAD magazines he might start connecting to the real world a little more, and losing that sweet innocence along the way. But no hurry!

To truly appreciate why Nick found the cover picture so amusing … read this older post of his obsession with cigarettes and smokers alike … It’s just as amusing!!

And let’s hope that President Obama’s first few minutes are better than illustrated….

Good Luck President Obama; Nick’s rooting for you!!

Sunday, January 18, 2009

Getting older; getting wiser...

Nick was at his usual obsessive "talks" of not wanting to grow up. It started off the same:

“My art teacher keeps saying that I'm tall; and said she can’t believe I’m in the 8th grade!”
“All teachers say that, Nick.”
“Yeah! You know I don’t want to grow up!!”
“I know.”
"And you KNOW I don’t want to go to high school!!"
“I know.”
“Why do the stupid teachers tell me that I’m big? I HATE that!!
“I know, but most teachers think that you like to hear that.”
"Well I don’t! (with a demonstrated fist in the air) I HATE THOSE STUPID TEACHERS, I'M GOING TO PUNCH THEM!”
“Nick, the teacher doesn’t know you don’t like to hear that; you’ll have to tell her next time, that’s all.”
“Yeah, well you know I don’t want to grow up and be older!”
“I know!”
“But it’s a good thing too?”
“Yes, it’s a very good thing…”
“I can do more things, like watch rated R movies?”
“Yup, older kids can watch whatever they want…”
“It’s boring to be little all the time?”
“It sure is; being older you can watch and do whatever you want…”
Big smile as he bounced out of the room and down the hall …

In case you didn’t catch the drift of what happened in our conversation, let me paraphrase: Nick introduced why he was mad; then his rage climaxed; then he gently talked himself out of it with the same content used to "settle the problem" in previous similar conversations… I had very little to do with it!! Remarkable!!

It’s getting easier now, and he’s memorizing and using points of conversations that help him feel better… I can just sit back and take the ride…YAHOO!! Or at least I could, this time. But it was wonderful to listen and note his progress!? No temper tantrum. No crazy talk. (Um, trust me, the previous outburst wasn't the worst!) He’s definitely growing up—physically and emotionally… And I’m so proud of him!

All I really have to say is Ahhh--my work here is done!! (well, kinda!!!)

And yeah, but… um… he will always be my little boy, Ubaboo, though! Right?? That’s U-ba-boo. It's love talk in native Mama, and it’s one of many, many nicknames that I have for him! And, Yes, just so you know--I do beat the record of "the most nicknames given to ones children," (if there is such a record) and I can prove it, too!! ;)

Friday, January 16, 2009

Come Play the Animal Way! Stone Zoo during Feb. Vacation

Come Play the Animal Way! From: Stacey Goldsmith-Nathanson

February 16 – 20, 11:00 a.m. – 3:00 p.m. Stone Zoo

Beat the humdrum winter routine and come out to Stone Zoo during February school vacation week. Watch wolves, coyotes and others have fun in the cold, and learn about neat animal adaptations to the winter temperatures. Just like you, animals can get bored when they’re cooped up all winter, so we have come up with some neat enrichment activities to keep them happy! Come and see all the creative things we do for our critters, and learn how we keep them active and playing throughout the winter using enrichment techniques.

Please contact Brianne for any questions: 617-375-9700

Thursday, January 15, 2009

Comic Books for all ages?

Ummm, maybe I was a little hasty about a point that I recently made in my last post about Nick outgrowing superheroes--entirely. Yesterday Nick asked me to take him to Newbury Comics, his new favorite store since he discovered that they have every comic book under the sun (and far out beating the bookstore). Not to mention tons and tons of superheroes figures, toys, memorabilia … you know Newbury Comics, right?

Well as Nick was looking over the comic books and choosing the one he wanted (Hellboy) since he still had a 50 gift card (from aunt Susie) for Christmas, I was observing a guy standing near and checking out comic books himself… and then I started to listen to his phone conversation (on cell) talking about “Spiderman,” I believed… unless he was saying that he just saw a spider, man!! But I didn’t think so; I think he was talking about Spiderman—the superhero … um, the fictional superhero, right?? And since he had a deep voice and a “beard,” I had to think that he was an adult—aka a grown adult male who loves superheroes, still!!! And then I realized that his buddy on the other end of his cell had to also be an eternal fan of all things superheroes, as well!!!?—perhaps there’s a club for all men who (don’t want to grow up) like superheroes?

I did quickly try to sneak a peek at the comic book that the “man” had stashed under his arm, to see if I could make out exactly what he was buying and if--just if--I had made some tragic mistake and the section that I had Nick practically stalking was, in fact … you know, the nude-girly superhero comics … if there was one? I did actually think that for a quick sec…

But then I realized no, and calmed my overactive imagination while standing by "observing" and holding my jacket, Nick’s jacket, Nick’s gloves, Nick’s hat, my purse, my hot coffee, my bags —and watched the boy and the man reading comics.

I noted that a lot of people (in all different age groups and cultures) love comic books, does this include superheroes for all ages? What do you think??

Wednesday, January 14, 2009

Everything Batman, but predicting not forever!!

Dunanananana BATMAN, BATMAN, BATMAN…Dunanananana … (click here if you want to hear the orginal tv show song and the tune in my head...)

I sing that song every night as I walk down the hall and glance into Nick’s bedroom. As a spin-off of my last post (about my daughter’s favorite things) my son loves all things superheroes … and Batman was one of the gifts that he got for Christmas--well actually, several Batman things, but I’m not counting or judging. One of these Batman things were Batman pajama pant bottoms; and after several weeks, I still see these Batman pjs hanging from the top bunk of his bunk beds, and still hanging from its hanger—“like on display.” Hmm, it would appear that he was not wearing the pjs and not really caring about them because, you see--you still don’t know about my son and his clothes hanging issues and clothes storing habits …. more on that later… but it’s simply not true. I see him at night walking around with the very same black and white Batman pjs--as in “worshiping” form. So my conclusion to my not-so-heavy research into this very interesting mystery is that he is wearing these pajama pants at night--as I do witness him sporting them proud throughout the house; and in the morning before his shower at 6:15 a.m, I can only assume that he is carefully taking them off and hanging them back on its hanger at the edge of his bed (like Batman would do) so that they don’t get dirty, wrecked, wet, ruined, or spoiled in any way…

Good grief, the only thing I can do at that hour is drag myself to the kitchen---with all of my “original” nightclothes still on my body (and NO, they are not the same clothes I would have been wearing the “evening” before… my life isn’t that much fun … anymore!!). But all I can do is make and pour myself coffee; hanging up clothes would be a far-reaching fantasy at that hour--but my 14 year old has been doing it dutifully for several weeks.

Now let’s go back to this boy of mine dresser drawers: sock drawer, pant drawer, pajama drawer--which has clothes strewn about and disheveled. Some of the drawers don’t even shut all the way because the clothes are so carelessly thrown in and hanging out--like a real slob’s room would look … But his Batman pjs are hung back up fresh, careful and without a wrinkle--and on display respectfully at 6:15 every morning.

God forbid I wash them and some tragic thing happens in the washer--my washer is on the fritz and it has been known to wreck clothes: rip, destroy and eat up to shreds ….

Ohhhhh, don’t even think that!!!!

But I don’t think that superheroes will be with him forever; at least not at the same obsessive level. If I’ve been observing anything in my life, it has been my son. And through the years I’ve noted that what he used to love and obsessed about, he no longer finds interesting. He doesn’t talk about, or read about, or play with dinosaurs (his very first obsession); and he hasn’t mentioned the words Power Rangers in years. So, if I were a scientist and this were my case study, I would conclude that this too will pass and he will move on to things of adults nature--as he grows into an adult: Women, sex, family, jobs—eek, sex and women are not comforting elements to think about; but one must face the tune as most parents across the globe do, regardless of if we accept it or not.

And if I can throw a cyber penny into a cyber wishing well and make a wish and have it come true, I wish all these things for him--everything he wants in life--even the scary adult stuff that all good parents must bear to witness of their special children. And I wish for a nice woman in his life who will love him more than anything and anyone; and…um…who just so happens to have a good paying job as a successful attorney, doctor, scientist--no, I’m not picky, but a scientist would be preferred, because that would be so much more fun for him!! And, of course, this wonderful woman would find her mother-in-law equally wonderful, deserving, praiseworthy … Okay, okay, I’m going too far, but it’s my penny and my wish!!

Tuesday, January 13, 2009

Smashies -- Kids Tested ...

Got kids? Or better yet, got kids who love apple sauce? I do! So when I was asked to review a new, all natural and organic apple sauce called “Smashies,” I was all over it!!
My son, Nick, is the applesauce connoisseur of the family and was just “delighted” when we received our Smashies; just so excited about trying a new product, and that it was “apple sauce,” Oh, my! After a taste, he just loved it and couldn’t get enough; he ate 2 out of the three we received in samples and has since asked for more. Now my daughter, on the other hand, is very picky about food and has never liked applesauce, so when I gave her a pouch to try I expected her to give it back to me, but she didn’t. I think she was intrigued by the packaging, the pouch, and after just a taste, she was going in for more—Mmm “approved by Meghan,” now that’s hard to beat!!

They even loved the pouch that it comes in—easy to open screw top and no spoon required!! It’s a great idea and ideal to eat anywhere at anytime. And, of course, I love that it’s organic and all natural—that’s No. Sugar. Added.

And no, I’m not getting paid to review this product; it’s definitely a green light for two young special teens! And yes, I'm having trouble refraining from calling it a "smashing idea!!"

Nick has requested that I pick some up; and after searching the Internet, it doesn’t seem to be available in stores in my area as of yet, so I will have to purchase them online through their website.

Here's more from Smashies:

Smashies is an all-natural line of organic applesauce that comes in a revolutionary pouch. No mess, with an easy to open screw on cap, it’s a great way to keep a nutritious and fun-to-eat snack at your fingertips. Each pouch yields 1 serving of whole fruit and is packed with antioxidants and Vitamin C. There is no added sugar or high fructose, and it’s low in calories and all natural. I’m hoping you agree that Smashies is a great product to feature.

Fact Sheet:

Who We Are: Smashies is the first organic, no sugar added “squeezy” applesauce line in the United States. Packaged in portable, convenient no mess pouches, they are perfect for lunchboxes or on-the-go families.

Smashies Story: Hot on the success of his all-natural vegetable juice blends, Karsten Robbins decided to launch a line focusing on children. Armed with intimate knowledge of how to bring products to market, he quickly honed in on the key criteria that would guide him: organic & no added sugar (because he has kids, too), convenience, eco-friendliness, and taste. Karsten wanted a product made of real fruit, but with the convenience and portability that a squeezy pouch could offer. In October 2008, Karsten officially launched the Smashies line of all-natural products.

Flavors: Snappy Apple
A blend of Organic Red Delicious and Organic Golden Delicious apples gently pureed.

· MSRP: 3.2 oz pouch $1.49
Smashies Health Benefits:
· Each 3.2 oz pouch yields 1 serving of whole fruit
· Packed with antioxidants, 25% Vitamin C
· USDA Organic
· No added sugar or high fructose corn syrup
· Low calorie, low sugar, all-natural

Eco Friendly-ness:
· Flexible packaging developed to reduce land fill space
· Less weight, therefore less fuel needed during freight
· Less breakage means less waste during manufacturing, in transport, in the store and in kids hands

Smashies Differences:
· Organic, no added sugar, preservatives or high fructose corn syrup
· Tastes closer to a real apple: snappy, tart
· Squeezy pouch makes snacking a no mess, all fun affair
· Guilt-free for parents: organic, no added sugar, it’s just apple
· Perfect on-the-go snack
· Convenient
· No messy hard to open foil cups or spoon needed!

Founder: Karsten Robbins

Plantings: Smashies are launching in stores all over the East Coast in October 2008. Look for them in natural food stores, coops, gourmet delis and soon to be in Whole Foods Markets. Also available for purchase online at


Sunday, January 11, 2009

Consolation of raising a special child--or is it?

Meghan still loves Barney, you know the big purple dinosaur… although I've noticed that the show has new kids from when she used to watch it--years ago, and as I’m listening to it right now from down the hall, I hear a new Barney voice as well. Oh, nothing stays the same--well almost nothing, but Meghan couldn’t care less, she’s jumping around to Barney and the music as she did when she was still a baby sitting in her walker--just bouncing around with the same big smile on her face. Even though she’s now 13, it’s still cute as hell to hear and watch. A child who can do more for herself than she could as a baby, and learning math and spelling, and long since has learned to write her name, still finds Barney a great joy.

Every time I see moments like these, from either one of my kids, I can’t help thinking that these are the moments that mothers (parents) of typical kids can’t relate to or identify with—among other things; it’s kind of like a weird consolation to having a child with autism and other developmental disabilities; that there is a piece of them, an innocence that may never mature—and likewise, child-like behaviors that a parent will never tire of; but, also, a fine, fine line of crossing over to a damnable offense, and an unsettling future.

Friday, January 9, 2009

Oh, Private Practice…autism and vaccinations

Oh my. It was real, it was raw, and it was true ... The power of television certainly does outweigh the power of words and of celebrity, at least in my opinion.

ABC's Private Practice aired a show last night about a mother with three young sons, the eldest child had autism and it demonstrated that this mother was truly commitment to her autistic son by revealing that she sought after new and innovative therapies to help him any way she could, but it also revealed that she had chosen to forgo immunizations for her other two younger sons for “fear” of getting autism. And, unfortunately, one of her sons contracted measles and died.

The show certainly spelled it out in black and white, at least for me. It was so heartbreaking to watch because you just knew how it was going to end, I mean the boy with measles just had to die to make “the statement” and it was a fierce statement about pro-immunizations.

The intensity of the drama grew even more riveting when the doctor treating the children took it upon himself to immunize the third child, even to the mother’s gross refusal

I think that this nighttime soap opera—drama—did a great job at showing us the “total” picture-- that not immunizing your kids could start an epidemic of sickness and death throughout the world--and a new fear. The show even demonstrated how others could so easily contract the disease because it is so contagious, including a pregnant woman’s concern for her unborn baby and the possible sickness and birth defect that the baby could be born with—just like that.

Personally, I am for immunizing children. I do not believe there is conclusive evidence that immunizations cause autism, and since there is no scientific or conclusive evidence, then why put a child and a society at risk for preventable disease and death, especially since the MMR does not contain Thimerosal (mercury based preservative that was suspected of causing autism), and since other immunizations, including the flu shot, can be given without Thimerosal, then …

What about you, did you see the show and what do you think?

Wednesday, January 7, 2009

Falkenbury Farm and Guest House -- Vacation Idea for Children with Autism

I love Vermont! There's so much to do and see throughout the year: summertime sightseeing, hiking and swimming, fall foliage, and winter skiing... Last year I took Nick to White River Junction, Quechee and Woodstock and stayed at Killington. We explored everything including several farms: cheese and maple syrup making; we ate lunch overlooking the river and a waterfall; and Nick got to see how pottery and glassware was crafted by the artists themselves. Every place we ventured, there was something unique to see and explore--and the mountain backdrop is a photographer's dream... And when I saw this note from Falkenbury Farm I just had to share it...

A Note From Falkenbury Farm:

Recent visitors suggested I try to market our guesthouse to parents of Autistic children. Their child loved the animals and whole atmosphere of the farm. The parents were able to relax completely in the guesthouse and cook and do things whenever they wanted. They had been searching for 'hands on' activities for their child. He was able to feed the cows, visit the llama and bond with the goats. If you have any ideas how to target such an audience, I would greatly appreciate it. Or if you would prefer to simply share our website with someone you may know? Benson, Vermont.

Monday, January 5, 2009

The Breastfeeding Debate--it's so much more than that...

Sometimes I have to laugh at parents who sit and worry so much about such matters as whether to breastfeed and not to breastfeed (ongoing debate), and that these young mothers become so anxious about possibly “screwing up” the development of their child so early on…. These parents are made to feel guilty and shameful, and are usually open for ridicule from the “expert moms” and doctors who believe that they should over not.

As a mom who was not successful at breastfeeding her kids, Nick was just too hungry to be satisfied by my milk supply, that I would lean toward the bottle to supplement and then just allowed the convenience to take hold—because I knew my son and I knew what was best for him—case closed. Did I feel bad about it? Yeah—I’m no different than any other mother, but I also felt like a better mom for listening to my gut and not the words of other so-called "wiser” moms, doctors, and the damned “baby book bible.”

My point is that there are so many other elements to parenting—so far beyond those first few months and the breastfeeding issue—that parents really do need all their energy and focus placed on these other elements of their child’s development, progress and happiness. Trust me. Focus on getting to know your child for who he is and pay less attention to comparing, competing, or preaching.

One day when Nick was about 7 months old, or so, we were dining at a small restaurant in Boston and Nick was holding his bottle (Playtex) with one hand. We thought nothing of it because that was what he was able to do at that stage of his development. The people at the next table to us also had a son of about the same age and just had to say something about Nick. They were so impressed and in awe with his ability at his age that they started insulting their own child and his “lack of” abilities.

I didn’t walk away gloating that my son was a genius of all babies his age and soon to conquer the world as Nick the Great—hell, I already knew he was great!! But I took his abilities at what they were for him at that time. We all acquire our own skills, talents, concepts and opinions that others may have yet to acquire or own—heck, I’m still trying to acquire some myself, but the one thing that I did know about my son at that early age was his ability to sit, attend, and absorb information—even early on—and these are the “bigger things.” And more importantly, I learned to trust my own instincts about him—as my shield and armor—because I knew him so well.

Flash ahead a few years and we knew that Nick was slower to develop and needed special help; but, again, I also “knew” him and I knew he was taking in information and asking for names and labels and absorbing everything that especially interested him, regardless of what others were saying and prejudging his abilities.

So when a group of doctors—highly acclaimed in their field (who says so anyway??)—told me quite conclusively that Nick would be nothing more than a trash man in life, I thought what a fool I would be if I listened to them and not myself—someone who knew him and had learned to trust her own instincts. To actually believed in them more than I believed in us. To believe the words, convictions, and thoughts of others who had only known him for a few short hours as opposed to my expert opinion as someone who had known him his entire life—through and through—as only a mother could. To actually be swayed to believe or think differently of my child than what I had already come to trust in myself; well then—I would be a fool.

Friday, January 2, 2009

Why I blog

I know what it's like to have an autistic child, hell, I know what it’s like to have two autistic children. Even though I know what my life is like, I certainly don’t know what you go through day in and day out. But because I see autism at its severity, and on a milder scale, I think I know a little about you.

I didn’t start this blog to bitch about my unfortunate life. I don’t want to take a stand for “why me” and preach my anger for anyone to listen. I chose to start this blog to find you. To find those who are living a similar life with kids with special needs. I also hoped by telling of my experiences--my successes and my failures--that I could help others just starting out on their own journey of a “different kind.”

I know what it’s like to be angry and sad and cry yourself to sleep because you know more than anything else in this world that the child you love more than any other person is going to have a difficult life. I know what it’s like to be criticized and not understood. To be ostracized. To be cheated. To be taunted. And to be beaten down and intimidated. I also know what it’s like to stand up and fight, fight for what I want and need, and to advocate for my children and for their futures anyway I can. I choose to fight to keep ineffective teachers or bad therapists away from my kid’s classrooms; and I choose to work hard to afford good therapists not matter what. I know far too well about taking on a school program and meeting ugly obstacles, but I choose to persevere and not surrender. I also know that I’m lucky, too; to be living in a state that has good schools, services, programs and plans available to help me if I ask—and if I know how to ask. I know many states that can’t compete and, therefore, people can’t help their children as much as I can. I hear. I read. I listen. And I’m learning too. And count my blessings that I don’t have to go through what some may have to endure—but I’m willing to try, help, come up with ideas and think outside the box.

As far as I’m concerned, people who read my blog have something in common with me and I want to listen to what you have to say and I want to help.

I don’t think of myself as “fortunate” to find that everything I’ve fought for to help my daughter has now failed me; Meghan attends a residential school because I have no other choice, frankly, and am faced with no other options besides a deserted island and an isolated life. And if this school program (extreme in its intensity) doesn’t work, then I know my daughter’s future is forever jeopardized.

I’m a parent--just like you--trying to work hard to keep my kids head above water.