Wednesday, April 29, 2009

Genetic link to possible future treatment for autism.

New findings in the cause of autism leads to hopeful treatment in 5 – 10 years. Here from Abc

For the first time, scientists have identified specific genetic mutations
that lead to specific abnormalities in how brain cells communicate and carry
messages in the brains of those with autism.

By comparing the DNA of those with and without autism, researchers were
able to identify several genes related to autism. Scientists say that autism, a
complex disorder, could be caused by as many as 50 genes.

The findings point researchers in the right direction toward developing
drugs to treat the disorder.

"What we're discovering in this study is that these genes appear to be
affecting similar biochemical pathways in the brain, and so then, if we can
develop drugs that can help to repair or restore that pathway, this eventually
could be extremely helpful as a treatment."

Read the whole story

My feelings are that it's great to know that we are realizing a better understanding of autism and its possible causes... and if there is an actual treatment for it, then what a bonus...

Feel free to offer your opinions in the comments..

Tuesday, April 28, 2009


An interesting thing happened a couple of weeks ago. We were walking into a—not so—local restaurant for Easter dinner with my family and spotted a family that we knew. Actually, they’re one of our neighbors who live up the street from us, and their kids used to play with my kids—especially with Nick, and expecially this one girl he liked. It was actually a nice period of time, a few years back, that kids would come into our yard and play with my kids… Ahhh, doesn’t that sound so nice!? And how did I pull that one off? I mean, how did I get a bunch of neighborhood kids interested in playing with my special needs kids who could not leave their yard. I vamped up my backyard with every toy imaginable—that’s how. I added a huge swing set w/ a fort, a fun trampoline, a basketball hoop, badminton, horseshoes, baseball game… get the picture? I bribed them to play with my kids without the actual contract. Until the day came that they all got bored. Sad! But the good part of this story was that when all the kids had dissipated and went off to the next fun yard, there was one boy who lingered. He was our immediate neighbor who happened to be the exact same age as Nick, and he would come over to play with him almost everyday, and sincerely, too! They would play on the trampoline together, then go to the family room and play a Play Station game… it was so nice for Nick, and I think this boy enjoyed himself, as well.

Then one morning while I was making coffee and looking out the window, my eyes did a doubled take in the direction of this boy’s front yard—I squatted, squinted, and with my mouth hung open wide, I saw the sign: For Sale.

Fuc* was my immediate reply.

But back at the restaurant, we said our very pleasant hellos to our neighbors and their extended family and moved on to our table led by the hostess. At the very next table from ours was a girl who I immediately recognized as a friend of Nick’s from school; a girl he knew from his special needs classroom. I said Hello to the girl and then quickly scanned the table to where her mother was sitting… I said a very nice hello, as did she, and as she was telling her husband who I was… I saw a look in her eyes that clearly said: You snob!

Meanwhile, Nick sat at his seat that was somewhat facing the girl’s chair. After seeing the girl, he immediately placed his hood from his hoodie on his head and I had to say, “Uh Nick, no hood, buddy.” I knew what he was doing; he was trying to hide.

I called it being civilized. I did not care about the people who were sitting next to us (either one of the tables) or their feelings about me, etc…We were having a nice dinner with our family--as were they--and that was all.

I bet you want to know what happened, dontcha!!?

Before I tell you the interesting details, I will tell you that it was an interesting dichotomy to be sitting between these two groups of families—that was for sure!!

At the beginning of the year, or shortly after, Nick was invited to this girl’s house for a playdate. After asking him if he wanted to go over her house and he replied yes, I called to make the playdate appointment. (Strange to say appointment isn’t it? Growing up as a kid in my small development, one merely ran around the neighborhood and pounded on any door that looked fun to play at…). On that day, I drove Nick to his playdate since he could not go over by himself because it was about 4 miles away, and even it wasn’t that far, I still couldn’t have him go to a compete strangers house by himself. (Again, unlike when I grew up. I remember banging on the door of the “new people's house” in the neighborhood and asking if she (the woman) had children—and when she said No, she asked me if I wanted to come in for some tea and cookies. I, of course, said yes—I mean, really now!! But how bored must this woman have been… entertaining a young, dirty 7-year-old girl who had just climbed a tree (probably) and sporting bare feet (most likely) with tea poured from a china teapot and offering tea cookies on a silver tray!! Uh, well I exaggerated the silver tray part, but you get my point!)

Now I’m not that experienced with playdates… it’s been a while. But I wasn’t just going to drop him off and leave… From the way the girl’s mother welcomed Nick into the house, it seemed like that was her plan. No, I hung out and was deathly bored. But that was okay, I mean… I wanted Nick to have fun on his playdate—or date. Do 14-year-olds have playdates?? This girl has special needs too. Down Syndrome, actually, and she was very sweet and nice to Nick, and who also seemed to have a crush on him. I think Nick was curious about where she lived and, well, being asked over to her house was new for him; it doesn’t come along very often. Um, almost never, actually!

To make a long story short, the following week I offered to have the girl come to our house… and we had pizza, soda drinks, and some wine for the mom. Then the following week, the mom emailed me to have Nick come over again. Nick agreed and I sat there talking with the mom for an hour and Nick was doing nothing more than watching TV with the girl. Bottom line, they had nothing in common, and by the next invitation, Nick asked me if he “had” to go over and I said “absolutely not.” So he declined. Actually, I had to do the dirty work and tell them that he was busy, etc. And after three, or so, emails later, she finally got the hint that Nick didn’t want to come over… at least that’s what I would have thought. I mean, what is one to do??

Unfortunately, the girl started being a little mean to Nick at school—she was in the next classroom over from Nick’s class and would see him intermittently throughout the day. I knew it was her way of being mad at Nick for not coming over anymore.

And this mom’s face at the restaurant had said it all.

I mean, what is one to do?

All’s fair in love and war; all’s fair in special needs and typical kids alike, whether we like it or not.

Friday, April 24, 2009

Why Meghan Goes to a Residential School

It’s been a tough week to get through. And I’m almost there. No, I’m not trying to bitch about Meghan being home and how it has been a lot of work keeping her entertained and out of trouble…. Can I just say, though, thank God for television and a handy ipod…at least for Meghan, and at this moment; because without them, I would not get much of a break.

As you may have guessed, Meghan is home from her residential school for the week, enjoying a vacation—an at home vacation. It’s nice to have her home on one hand, but tough on the other. She has been up to her old tricks of trying to eat too much, washing her hands too much, dumping out soaps, shampoos and even toothpaste—I still don’t know why the toothpaste? She also loves food and would eat quite a bit at one sitting if she could--and does--when I’m not looking…(Um, that would be an entire bag of frozen French fries, a whole bag of bagels, an entire box of pastries…I think you get my drift! I still can’t get over how much she eats.) I actually have to stand guard, when I can, to “try” to contain the overeating.

It’s still a full-time job taking care of Meghan, but what’s different from how it used to be, just one year ago…? I am no longer scared to intervene and enforce a No when necessary--even though she may not listen. I have lived many years of trying to mother and discipline a reluctant autistic child. Spending most of my time with her and keeping her safe and on track. What track? Any track. But, as some of you know, when she turned 12 (her teenage years), she'd found a whole new way of manipulating me in trying to get her way—she attacked me. I would be left black and blue with bite marks all over …and let’s not even mention my bruised and broken ego.

I think there’s a big difference between being attacked by your child than being attacked by your husband. The being attacked part would be the same, I imagine: the hair pulling; being pinched in the most sensitive of places—the cheeks, the breasts, the neck—anyplace that would hurt you. But, I think when it’s one of your own children hurting you like this, it’s a lot different, at least from the mother’s perspective. In both circumstances the abuser would show the rage in their eyes—they change, and the whole look of the person’s face becomes someone else—a different person in the moment. At that point, the anger is so beyond control that the abuse will happen no matter what you (the victim) say or do. If my husband hurt me like this, I would call the police, have him arrested, and I would want him dead. When my daughter came after me (sometimes once a day) I would almost surrender to her and allow her to pull my hair and pinch my cheek; but, at the same time, I’d be fending her off as best I could without truly hurting her…. I mean, how can you hurt your child who doesn’t fully understand the world around her, and cannot speak—communicate—to articulate her own complex feelings… I mean, how else could she let it out? And whom else could she let it out on?

I, of course, didn’t like her attacks. And after those few seconds, while both of us were resting from the adrenaline rushing through our bodies: hers through rage, mine through self protection, the bites and the pinches were not as painful as the pain of what was left of me after those moments… when I would get away, run outside and cry.

Meghan, on the other hand, would run to her room, or my room, sit, watch TV and laugh. I didn’t think it was a sinister laugh, but I did think she felt better… I mean, she let it out, right?

My husband once asked me, after an attack, why it was that I was crying…

I couldn’t believe he had to ask.

I am not scared now… I know Meghan has learned that attacking people is not acceptable… She’s learned this at school—her residential school, where there are trained and knowledgeable teachers who understand the different facets of autism and its associated behaviors—and where there are always two or three women (teachers) on hand to stop her before she can start…They are not scared, because they know the routine. When Meghan comes after one of them, usually the one who told her NO, two or three teachers will be there to grab her arms and direct her to a chair until she calms down…and at the same time, redirecting her to another activity. And, consequently, they would not be sad, or scared, or be crying. They would not even be mad at Meghan, because they know best how to help her understand, behave, and, eventually, live to become a productive member of society (or at least learn to live to her fullest potential). And as for Meghan? Well, she has since learned that this form of “trying to get her way” is no longer acceptable. She still bites her hand and pinches or bites her teachers when she’s frustrated, but most of the time she will walk off to her room, or to a chair, to vent and regain control.

I sit here now with confidence that when Meghan is home, I will do my best to keep her from eating too much, dumping out soap, biting foreign objects, etc.. and keep her engaged in activities to move her along with her day. I will teach, or coach, her what I can while she’s here—because I now know I can without fear. I will also enjoy snuggling with her, watching TV with her, playing her silly little clapping game (one that she has learned at school) and know that the time with us will be invaluable and well worth the petty struggles (the small stuff), because she will go back to school next week and learn even more…and make progress.

Sometimes I wonder what would have happened if I hadn’t allowed her to go to residential school; if I just chickened out and thought, well, I will just manage and do what I can; and if I get attacked, well, it would be better than having her live outside our home…right?

I know our life would have been different—very different. Meghan would be at a collaborative school—one that would actually tolerate her attacks; but at the same time, not like her because of them, perhaps even be afraid of her. I mean, why not? The other schools were, so why would this one be any different? She would also be twice as tall, and three times as big (at that point), and her tirades? Well they would be commonplace. And Nick would be afraid now, too; he would run away from her and, in turn, not respect me anymore… He would want to escape to a place far away from his mother—who he had once felt close to and, ironically, safe with, but who has now abandoned him because of her broken spirit and lost sense of self.

And in the years that would follow, people—neighbors, would drive by my house, and at sometime, somewhere within the depths of their car someone would eventually ask: Hey, what ever happened to that woman who lives there? You know, the one with the happy disposition and easy smile. I remember when she used to have wonderful birthday parties for her kids and would invite the whole neighborhood to come… And someone else, the one who would know, would say in response, Oh, yeah, well she still lives there. You see, somewhere deep within her house, sheltered behind closed doors, she lives there with her adult autistic daughter who scares people…and, unfortunately, all attempts to get her into an acceptable program have failed. Yeah, it’s sad. Some people even say that the woman’s arms are always covered with bruises; her smile, gone; her spirit, lost.

Yeah, it’s sad there now, very sad.

Monday, April 20, 2009

Almost a year after entering residential school…

This week I thought I would stretch back to my archives and pull some oldies from when I first started blogging 10 months ago. As you know I started this blog to help me deal with the reality of sending Meghan to a residential school. And over these few months, many people have found me (this blog) for that very same reason: they are facing the same reality of having to send one of their own children to a residential school.

It’s interesting because back then I definitely thought that some visitors to this blog would condemn me. I thought they would tell me that I was “giving up” or “how could I send my child off to residential school,” or an “institution” for those who didn’t understand. I thought this because I, too, thought it of others who preceded me and had done it to their own children when my daughter was still very young.

Back then I had no idea what the future would hold for me, for my family, and for Meghan--and it scared me to death. The “not knowing” about our children is the horror in anyone’s story--as in any difficult situation or traumatic event. I can honestly say that I thought I was as a fighter, and fighting for daughter (for my children), and was determined to make her a success story. But by sending her off to a residential school was surely the start of just giving up and surrendering.

This was the main reason for writing this blog: A form of therapy, reaching out to others, helping others, seeing my words reflected back at me to completely comprehend what was going on…all of it. And I found myself pulling away from Meghan—physically and emotionally, as if to protect her and to protect me. I would find myself searching for an escape—reading books, spending time with friends… anything to detach myself from my failure. "Failure." It’s interesting to see this word and think of it as a common word used when one is failing at school, or a job, or a project…but not parenting. Failing your child is inexcusable. And no matter what anyone said to me in support of this decision, I believed it was a failure on my part and an end to her success story.

And now, after almost a year, I realized that I was wrong—terribly wrong. I realized that NOT sending Meghan to her residential school (and I’m stipulating her school) would be the true act of failing her. By not sending Meghan to residential school would be saying that I didn’t believe in her, her future and her ability to succeed. What I thought was selfish on my part—sending her away to school and in the care of strangers who could do a better job?  Was instead sending her away to a school with “many” trained teachers who could help her. I realized that this was a gift with a disgusting name in a cold and uncaring disguise. A gift to her.  A gift to me. And  a gift to our family. It was gold.

I also came to realize during this crazy, surreal and transformational year, that this was just the start of her success story.

Thursday, April 16, 2009

Spring, spring; it's here, it's here!!!

My kids will be home all next week for spring break, and Nick will come home from school this afternoon and ask for tomorrow off to start his vacation a day early… Hmmmm?? Anxiety or manipulation?? What to do?

Meghan will be home for the entire week. This will be a good...and fun...and lovely little break for all… and by Thursday, I will be a complete nut job (that is: more so than I am already).

I will require many trips out to bathe in the warm sun (there had better be sun or I’m gonna hurt someone) and enjoy some relaxing drinks.. (um, apple martinis come to mind); so while I walk around like a crazy person and sweetly sedated by liquor, I have just one assignment that I want to do for Meghan:

Paint her room.

Paint all of our rooms, actually--and the family room too. And the porch railings, and fertilize the lawn, repair the Adirondack chairs (J.C).

Anyway, my problem is this… I need to find out what color Meghan would like me to paint her room. I have, at one time, laid out swatches of color to have her pick her favorite, but to no avail; she just pointed to each one and recited the color---she's so proud of her “color speaking skills.” But I want to know “which” color to paint her room—or what her favorite color is, frankly—but she doesn’t understand the question.

Any suggestions? Please be my guest.

Otherwise, I’m going to go with Apple Martini green!!


And interesting to note: I have been wearing a shirt on my body for hours now—one that I didn’t recognize as my own, and much bigger... so I thought, hmmm, where the heck did this come from??” Anyway, it looked good on me so I decided, hmmmm, who cares, it looks good with my jeans!!

So out and about I suddenly noticed a little tear at the sleeve and thought--OMG, it’s Meghan’s shirt… how did I not known?

The bottom line: Meghan has been living outside our home for several months that I didn’t even recognize her shirt.

Wednesday, April 15, 2009

New Book Release -- The First Year, Autism Spectrum Disorders

For all of those just starting their journey and research into autism... this is a must read!! Pass the word around if you know someone who could benefit from this book!

A Message From Da Capo Lifelong Books:

I’m writing to let you know that our new book, The First Year®: Autism Spectrum Disorders, is now available. In this important new book, Nancy D. Wiseman, founder of the national organization First Signs, Inc., walks parents through everything they need to learn and do if they suspect their child has autism. Offering both compassionate insight and a wealth of information, it will provide parents with the range of care, treatments, therapies, and services available for their child’s needs.

Praise for The First Year®: Autism Spectrum Disorders:

"An invaluable guide. With this book as your companion, you can help your child live a happy, healthy, full life.”—Kenneth Bock, MD

To learn more about the book and its author, please visit:

Best regards, Lindsey Triebel
Marketing Manager
Da Capo Lifelong Books,
Cambridge, MA 02142617.252.5284 .

Tuesday, April 14, 2009

Happy Birthday Songs...

Nick’s birthday is today.. HAPPY BIRTHDAY, NICK!!

My parents call all of us on our birthday to sing the HAPPY BIRTHDAY SONG. I knew it was them when they called Nick this morning… based on caller ID and that I have a special tone assigned to their number… so I can tell it’s them w/o seeing the phone. A talent which Nick still can’t wrap his brain around…."How do you always know it's them, Mom???"

Anyway, halfway through the song that they were singing to him, Nick looks up to me to say: "Yup it’s them!!" As if he didn’t quite know for sure… so funny.

Afterward, I started singing him a song too, made up songs that I like to sing around the house every so often…

This was our quick conversation:

"How’d you like that song, Nick?"
Big smile on his face…
"Do I have a talent in this area??"
"Ah, NO!"

Uh-huh! Now that’s my honest boy who’s (big gulp) 15 today! YIKES.

Do I look like someone who has a 15 year old???

Well do I?

HUH??? ;)

And we will be going out birthday shopping with Nick today—to spend his birthday money, and yes, he’s loaded!! Thanks to Grandma, Grandpa, Aunt Sue, Uncle Rick, his parents… And, Yes, he’s playing hookey today. Of course! Then to Grandma and Grandpa’s house for dinner.

Did you hear that? (cue new song..) I don’t have to cook todayyyHooray, hooray….No, I won't sing this song because, apparentlyyy, I don’t have a talent in this areaaa… hooray, hooray!!

Awkward, isn't it???

Social Skills Programs, Community Programs, and Camps… Oh, my!!

This list started off as only one resource, and then it grew out of control… How fun!!

For those living in the Seattle area, I recently read about this program:

PEERS - Program for the Education and Enrichment of Relational Skills; A teen friendship-making program.

This program offers social skills intervention for motivated teens in the 7th-12th grade who are interested in learning ways to help them make and keep friends. During each group session teens are taught important social skills and are given the opportunity to practice these skills in session during real play activities (e.g. playing sports, board games, etc.). Parents are taught how to assist their teens in making and keeping friends by providing feedback through coaching during weekly socialization homework assignments. Regular attendance is imperative and parent participation is required.

More about the success of the program here.

For those in Massachusetts: A friend gave me the heads up for this program. Massachusetts General Hospital is offering workshops and social skills groups for your child with autism. There is a summer social skills program, offered in Wellesley, and will run for 2 weeks, three different sessions, 9:30-12:30. There’s also an after school program being offered. Check out the program and rates here.

I would love to have Nick attend this social skills class (it sounds great) but Wellesley would be a difficult commute for us this early in the morning.

Also in Massachusetts: Community Autism Resources is a wonderful program dedicated to helping and teaching children with autism through community programs. I have participated in several programs offered through CAR in the past years, and plan to again, for family time at Wellsprings Farms, while Meghan is home for spring break….Check out the calendar for spring here…. CAR also offers other links to programs such as, social skills groups, IEP help and Circle of Friends …

Summer camps: For those living in southeastern Massachusetts, Hanikids have great programs for all ages and special needs.

I asked Nick what he wanted to do this summer: handikids camp or sailing at the Duxbury Maritime, and he chose sailing. If anyone is in the Duxbury area this summer, here is the link.

Check out camps for kids—day/overnight for all kids—in your area.

For Everyone: Model Me Kids social skills training DVDs.

HELP: If you know of other social skills programs in your area that seem interesting, please let us know in the comments, or email me and I will let the word out…

Suggestion: my local Arc (Plymouth, MA) also offers social skills groups on an ongoing basis. Check out your local area Arc for groups and let us know at Fearless Females.
Note: all of these resources are also provided in the Resources links of this website...

Thursday, April 9, 2009

Literally Autistic

I don’t know why, but I keep referring to Nick’s ipod as his iphone…With his hands held open and his arms out wide, he tells me: “I don’t have an iphone, Mom!” He thinks so literally and sometimes lacks the creative thinking to substitute the correct word for my misspoken word (or vice-versa??), or in this case, the correct object…even though it sounds almost similar.

Sometimes I just want to yell: Ughhhh!! You know what I mean!! But he doesn’t really. And I’m still trying to work with him and teach him that people are “only human” and that they make mistakes—and all the time, too…. But then we’d just get into the whole discussion of “why are you mad, Mom? He thinks I'm mad when I'm simply exasperated, and thinks that I’m angry when I’m simply making a strong point! And in case you haven’t guessed, I just really want to say to him:

Hey look kid, I’m simply a product of my own mother—one who always appeared to have an extreme, and before her years case of dementia—to say the least.… So I grew up acquiring the fine art, or skill, of being able to play an interesting game of word-decoding and filling in blanks when needed; that is, putting pieces of stories together and making sense out of the jumble. And let’s not even mention being called three different names before coming to my own…and without taking it personally! So give my 42-year-old brain a break, would ya? Besides, a few centuries ago, most people would’ve been on their deathbeds at my age!!

But, of course, I wouldn’t dare say anything like that to my boy! I could never. I wouldn’t hear the end of the discussion—debate—theories—obsession—traumatic moment-of-a-14-year-old-boy’s-life… and the list could go on and on…

Especially the “death at 42” part…Whoa! I would hear something like: “WHAT, people don’t die at 42, they don’t die until they’re 100, Mom (like on the dot), you know that!! So stop making up stories!” Even though he runs—like a racehorse—to the nearest TV when he hears about death and dying on the news (and before the age of 100)… And I won’t even mention how he took the news about how cats only live ‘til about 20… “WHAT, but that’s just a teenager!!” Don’t worry; I’ll spare you—my good, loyal readers—the in-depth details of that particular discussion… But here’s how the rest of the ipod/iphone story went…

“Why do you always get things wrong, Mom?”
“I don’t know… I was distracted.”
“Why are you always distracted, Mom?”
“I don’t know, it just happens to moms.”
“Like Grandma?”
“Why does she always get things wrong?”
“Because she’s getting older…and that just happens sometimes…”
“What? she’s not old…100 is old, what are you talking about, Mom? Stop making up stories!!”
“I know, I’m only kidding…”
“Is Nana old?”
“Well, she’s 82..”
“Is that old?”
“Yes, a little”
“Yeah, she got all wrinkly already!!”

Hey, got wrinkles?? ;)

Have a wonderful Easter, or Passover…

Wednesday, April 8, 2009

Autism Advocacy

Lately I’ve found myself looking more closely into an autism advocacy group called “Acceptance vs Cure.” And I wanted to say that I was misguided and didn’t mean to antagonize a friend.

As I have stated before, I want both: an awareness--an understanding of autism; and an acceptance of autism for the sake of our children—don’t we all?

However, I do support the studies of autism; to learn and understand more about autism and other similar disorders.

Some people believe that autism should be left alone and accepted for who they are in this world, as a difference. I agree to a point. I certainly want my children accepted in this world for who they are—who the hell wouldn’t? I also believe that my daughter is who she is—her strong, vibrant and playful personality defines her. I only wish that some of her own personal struggles with autism could be resolved, like: comprehension and verbal language ability, sensory overload and behavioral issues; if only to help her live an easier life.

I found this quote from Simon Baron-Cohen, a professor of developmental psychology at Trinity College, Cambridge and an autism researcher, I think he says it eloquently:

"I do think there is a benefit in trying to help people with autism-spectrum
conditions with areas of difficulty such as emotion recognition. Nobody would
dispute the place for interventions that alleviate areas of difficulty, while
leaving the areas of strength untouched. But to talk about a 'cure for autism'
is a sledge-hammer approach and the fear would be that in the process of
alleviating the areas of difficulty, the qualities that are special - such as
the remarkable attention to detail, and the ability to concentrate for long
periods on a small topic in depth - would be lost. Autism is both a disability
and a difference. We need to find ways of alleviating the disability while
respecting and valuing the difference."

In the News...and TeacherVision

In the news... the questionable and the truly unthinkable:

I find science interesting. I may not always believe what I read—like rain causing autism, but this is interesting: Women who conceive in the spring are more times likely to have a child with birth defects… Read the link for yourself...

And what's "truly" unthinkable: A Massachusetts mother withholds cancer treatment from her 9 year old son---who had autism, and later died of his curable form of the disease. Read here.

Feel free to offer your opinions in the comments...

Also, I thought I would pass this link on to anyone who may be interested. It's called TeacherVision and offers lesson plans, printables, and special need information and helpful suggestions for your special needs child, including IEP information. Great for teachers, parents who homeschool, and all parents....

Monday, April 6, 2009

My Two Stars

Sometimes I wish my kids were this young again… if just for a little while, so I can still pick them up and hug them tight!!

But, of course, I’m glad that they’re older, and some of the mystery of their lives are solved and their futures are a bit more in focus.

I know that Meghan is in a great school for her, and that next year she will be in a work training program—learning a trade that she likes, and taking on a job that she wants, while working on the building blocks of self-esteem, confidence, and happiness—her life. And when she graduates at 22, she will, hopefully, have the skills and the understanding to live as independently as possible in a group home with good friends whom she can relate to and rely on.

And Nick will move on to high school next year and have a teacher that he had back when he was in 1st grade; a little comfort in a strange new place. He, too, will graduate when he’s 22 and move on toward a work program and live wherever and however he chooses—and home will always be a choice for him. Perhaps in his adult life, and maturity, he will find that one special friend to hold on to and walk through life with—a little protection.

And I will be there, too. To watch, help and advocate for them whenever and wherever they need me, just as I was when I first shot these pictures.

Friday, April 3, 2009

Vacation at Home??

Sitting here while awaiting Meghan’s bus (and inhaling some chips and dip--salt, I need SALT), Meghan will soon be getting off the bus and running inside. Did you get that, running? Yes she will, because, to her, this is "vacation." Ohh, now I've got the Go-Go's "Vacation" song in my head.
And now it's in your head, too! Sorry! But what the hell, let's just enjoy it .... G0-G0's Vacation, live

Coming home every other weekend is a "real" break from a stricter routine and food menu. Yes, food too. I feel guilty because she just wants to “inhale” food when she’s home (like I'm doing with these damn chips!!), because she can’t do it at school. A food addict or sensory needs? Not sure, but she loves food, and the guilt comes into play because I give in a bit and give her “extra” food that she would not ordinarily get at school. Oh, good mother; bad mother??

A few minutes ago I popped into her room to check on her bed to make sure that everything was to her liking. Gee, I feel like an innkeeper: good food, nice bed, and NO, there isn’t a chocolate on her pillow…that would be ridiculous! (It’s actually stuffed in her drawer!!... Hey, what that heck do you want from me, I’m a mom!)

But on her bed is the newest member of her Winnie the Pooh collection of stuffed animals. It’s Piglet. She didn't have Piglet, so I got her one from Disney World. (Incidentally, she keeps Winnie the Pooh home, and the others are on her bed at school. Not sure why, but I’m guessing it's to make sure she knows she’s coming home (tugs at your heart, doesn't it?). Meanwhile, Tigger and the rest of the crew are with her at school—cute, huh?) And Yes, I was feeling a wee bit guilty that she had to stay in school, and did not come along on our latest trip. But I’m glad that she didn’t; it would’ve been hard on her from what I had heard from school. I get an update every week and last week was no different. The teacher told me that she didn’t have a good week last week… A lot of hand biting and sensory issues, and it seems like it was PMS related. Can you imagine being on the plane, or on a Disney ride, and have Meghan feel overwhelmed and become behavioral? Yikes. It was one thing when she was a lot younger.. and smaller!

I remember one time a few years ago, I took the kids to a fair and, bravely, took her on a “fun” ride: the water, roller coaster ride (semi- coaster, more water ride). Anyway, she had decided that she had had enough and wanted to get off as we were ascending the roller coaster part and then a splash down… I had to yank her down and practically sit on her to make her stay in her seat--while I was having heart palpitations!! Can you see us now? I mean, where did she think she was going to go?

So yes, as I was standing in line for a scary as hell Disney ride--which included heights, I imagined that scene and knew that I had made the right decision--to make this trip just about Nick!

And I’ll admit, I had a good break too!
And the Vacation song is over..... so sad!

A Run for Autism

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 a little more than $3,000 and needs your help ... today!

Please spread the word about Christine Carlson (who is amazing, by the way). Please read more about Christine Carlson and her “Miles for Miracles” Boston Marathon run.

Here's more about the Autism Language Program (very interesting and necessary for kids with autism who cannot communicate verbally---like my daughter, and probably someone you know too!) :

Thursday, April 2, 2009

Obsessive Compulsive Disorder (OCD) Online Support Group--New

Do you, or someone you know or love, have OCD (Obsessive compulsive disorder)? I know people who do. Beth Green, a volunteer for a new, free OCD online support group, wants your help to spread the word. Read more and click on the link to join in ...

My name is Beth and I volunteer to help spread the word about a new free Obsessive compulsive disorder online support group.

As I know this falls within your interest I thought that you might want to help us in the quest to reach as many people as possible (the more people know about the group the better help they will get). You can support us in many ways (not financially): telling people you know, linking to it, writing a blog or forum post and participating in the group discussions.

Your help is much needed and any support will be most appreciated.
You can check out the group at:

Have a great day,

Beth Green, POB 200067, Pittsburgh, PA

April Vacation at the Zoos

Need to keep the kids busy during April vacation? The folks at Stone Zoo and Franklin Park Zoo wanted me to pass along some fun activities taking place at their zoo...

Bunny Bonanzoo
April 11, 11:00 a.m. – 3:00 p.m.
Stone Zoo

Hop on down the bunny trail to Stone Zoo where an Easter celebration awaits! Activities include holiday games, crafts and seed planting. Be sure to visit with our special guest, the Easter Bunny, who will be ready to smile for photographs.

Conservation Week
April 20 – 24, 11:00 a.m. – 3:00 p.m.
Stone Zoo

While school is out for April school vacation week, have fun while visiting the Zoos! Each day will offer a variety of engaging and educational activities for kids of all ages, as well as many helpful hints for preserving our planet.

Stone Zoo info

Hours of Operation: Summer Hours (April 1 – September 30)
10:00 a.m. – 5:00 p.m. Weekdays
10:00 a.m. – 6:00 p.m. Weekends and major holidays

General Admission: Adults: $9.00
Senior Admission (62+): $8.00
Child Admission (ages 2-12): $6.00
Children under 2: Free
Members: Free

Address: 149 Pond Street
Stoneham, MA 02180
Ph: 781- 438-5100


Conservation Week
April 20 – 24, 11:00 a.m. – 3:00 p.m.
Franklin Park Zoo & Stone Zoo

While school is out for April school vacation week, have fun while visiting the Zoo! Each day will offer a variety of engaging and educational activities for kids of all ages, as well as many helpful hints for preserving our planet.

Animal Survivors Spring Break
Come spend four fun-filled days at Franklin Park Zoo during spring break! This year’s theme is Animal Survivors and we’ll explore the relationships between predator and prey, as well as the unique adaptations animals have that help them survive in an “eat or be eaten” world. Topics include habitats, adaptations, predator-prey and extreme survival and are taught through interactive presentations, keeper encounters, behind-the-scenes tours, games, crafts and more!

For more information, call 617-989-3742. Class sizes are limited – advanced registration is required!

Participant Ages: 6 – 10 years old
Location: Franklin Park Zoo
Dates: April 21 – 24 (Tuesday through Friday)
Prices: $150 Members, $175 Non-Members
Time: Drop-off: 8:30 – 9:00 a.m.; Pick-up: 3:00 p.m.

Earth Day
April 26, 11:00 a.m. – 3:00 p.m.
Franklin Park Zoo

Come celebrate Earth Day with crafts, activities, animal encounters and environmentally-friendly exhibitors at Franklin Park Zoo! Did you know Zoo New England supports conservation efforts both locally and abroad? Throughout the day, we will celebrate the great diversity in the animal kingdom with all of the incredible animals that call our Zoos home. Discover all the different ways that you can have fun while helping our planet.

Franklin Park Zoo info

Hours of Operation: Summer Hours (April 1 – September 30)
10:00 a.m. – 5:00 p.m. Weekdays
10:00 a.m. – 6:00 p.m. Weekends and Major Holidays

General Admission: Adults: $12.00
Senior Admission (62+): $10.00
Child Admission (ages 2-12): $7.00
Children under 2: Free
Members: Free

Address: One Franklin Park Road
Boston, MA 02121
Ph: 617-541-LION


Wednesday, April 1, 2009

Back from Vacation; Back to Reality!!!!

Woke up this week to some pretty extreme anxiety issues. Not me—Nick. I was a little surprised, because with the break last week (Disney trip), I thought he might be back to his usual self. No. Actually, he’s a lot worse off this week. Gee, I thought going on three roller coasters would have done him in; but no--school--not Space Mountain, is the culprit…

Who would have thought?

To be very honest, my anxiety was high during some of this trip. Going on Space Moutain, and twice, did me in---and yes, I screamed; and I had to hold my sister’s hand (like a scardy cat ) on Soarin’, I mean, OMG—it’s simply not the thing to do if one is deathly afraid of heights---um, that would be me! But it was an incredible ride when my eyes weren’t sealed shut! Experience the ride yourself on this you tube that I've found: Soarin You Tube.

Oh, but I digress; Nick actually had to take yesterday off because his anxiety was much too high… I couldn’t make him go while he looked like he was about to have a panic attack. Instead, I emailed his teacher about the issue and she told me that she understood about his anxiety and will do everything to alleviate his stress. This includes not going to his homeroom class after going to his locker. Instead, he will be met with an aide to go to his lifeskills classroom (smaller class and easier for him to manage) and then he will be accompanied by an aide for his other classes. The teacher will also give him a special journal to write about his anxiety when he feels the need. (I have a feeling he will be writing a book today.).

Anxiety at school will surely be continued….

But Nick had a ball with his two cousins at Disney World… Here is a little preview…

Nick at Magic Kingdom... We visited Magic Kingdom, Hollywood Studios, Epcot, and downtown Disney.

Epcot; London in Epcot; Nick and me at the entrance of our hotel; the view of the river at our hotel (we stayed at Disney's Port Orleans French Quarter Resort); below is an artist's cartoon drawing of the kids...