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.

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.

https://howtohelp.childrenshospital.org/bostonmarathon09/pfp/?ProfileID=CC0103


Read more about the Autism Language Program:

http://www.childrenshospital.org/clinicalservices/Site1850/mainpageS1850P0.html

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.


https://howtohelp.childrenshospital.org/bostonmarathon09/pfp/?ProfileID=CC0103




Read more about the autism language program:

http://www.childrenshospital.org/clinicalservices/Site1850/mainpageS1850P0.html


Good luck, Christine… you are an inspiration!!

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.

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

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!!

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!!)

“Okay!”

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
FOR ADDITIONAL INFORMATION: 617-541-LION or visit www.franklinparkzoo.org

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...

HOW CAN YOU HELP?

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 www.autismvotes.org/.

For more information on the autism insurance reform initiative in Massachusetts, visit www.AutismVotes.org/Massachusetts.

Warm regards, Judith UrsittiRegional Director of State Advocacy Relations Autism Speaks

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!!