The Contrast of Both Ends of the Autism Spectrum

I have such a great boy. This is what I’m going to write about today so if you already feel like vomiting from reading just that little bit, then hold off and I will send you a more depressing poem later—; But for now, I have got to tell the world that Nick is just such a great boy.

To be completely honest, raising both my kids (one with mild autism and one with severe autism) is in itself an interesting contrast. I have the benefit of raising both extremes of the autism spectrum, but I can honestly say that it was not a picnic raising both of these kids together. Sometimes I wondered if I didn’t have Meghan or if Meghan wasn’t autistic, would I appreciate Nick (autism and all) just as much as I did, and do now? Meaning that compared to the difficulties that I had with Meghan (being on the severe end of the spectrum), would Nick still have been a piece of cake? The answer to that question is: I believe so.

It wasn’t just the contrast of their disorder; it was also the contrast in their personalities, too. Nick is just an easygoing kid who will always do what I ask of him. Just last night I mentioned to him that he needs to participate in an after school activity, like taking up karate again, or we will head out to the gym and swim some laps--just something. Whatever you say, mom! And I also told him that he should be reading more, even though he is a good reader, but I emphasized that it’s a great down time activity. So, what did I catch him doing in his room at 8:00 last night? He was reading! Yup! And after some time he came into my room (where I was reading, as well) and asked me if he could stop reading soon because he was reading for a while and it’s hard to make it to the end of the book. (Don’t ya just want to eat him up alive!!) I think the poor kid thought that he had to read a book from cover to cover in one sitting! (No wonder why he doesn't want to read the Harry Potter books) I just wanted to hug him.

But honestly, whenever I ask him to do something, he does it. Please take out the garbage, Nick. He does it. Eat your vegetables. No problem. We are going on a boring car ride to find the closest Starbucks to feed mom’s caffeine addiction! He jumps in the car—no complaint. And if I tell him not to eat too much candy, like yesterday afternoon, he’ll ask me when he could have a piece of candy. Oh, just loving this boy!!

He listens to everything that we tell him and does everything that we ask. He is just an easygoing boy who likes to please. And did I tell you that he’s a teenager too!!

That fact that he also has a disorder and developmental issues doesn’t bother me in the least, but it worries me. I worry for Nick, more that I do for Meghan; as strange as that sounds. I know that Meghan is going to be fine. After she graduates from her school program at age 22, she will have choices, choices!

But Nick is caught in between. He is neither severe enough to qualify for programs nor is he mild enough to fit into the mainstream. It’s like the pendulum is moving this way and that but I just don’t know where it will fall, at least not yet.

In the meantime, I will continue to enjoy this picnic of a boy for as long as I can…

The Different Faces of Autism

One mom, who calls herself an autism advocate, mentioned that she feels lucky even though she has a daughter with (mild) autism. She counts her blessings everyday because she has two wonderful, beautiful kids. Her autistic daughter does have challenges but she is verbal and can speak and articulate her feelings, and meltdowns are few and far between. She attends a typical classroom and is doing just fine, at least at the moment. This mom believes that her life with autism is tough, but she is standing tougher in her fight against autism and will not allow autism to define her daughter. This mom fights to educate and advocate for her child so that there is acceptance in the classroom and in society. She is considered a conqueror; a positive thinker; a survivor; and is highly regarded by her peers. The golden key here is that she knows that her daughter could have success, and she prays for it everyday. She does feel lucky and will stand up strong to autism.

This mom is also very outgoing and has lots of friends because autism doesn’t hold them back. Again, autism doesn’t have to define their family, at least most of the time.

This mom goes to birthday parties; goes on vacations, but notes that her daughter doesn’t always play well or even played with by her peers, and it breaks this mom’s heart.

Life would be perfect if only her daughter could better her life.


There is another mom who also calls herself an autism advocate. Her beautiful daughter has (severe) autism and is non-verbal and cannot articulate her feelings, therefore, attends a restricted classroom that includes a time-out room for behavioral meltdowns. Her daughter is prone to having meltdowns and being restrained. She is not capable of going out with her daughter without a behavioral plan in place. For her daughter, the school bus cannot transport her to school without the safety of a bus monitor. Going out in the community is stressful and, in most cases, not successful, but she tries. She, too, is considered a conqueror; a positive thinker; a survivor; and is highly regarded by her peers. She does not want her daughter to be defined by her autism, but it can’t be helped no matter how much she tries. The very least of her daughter’s problems is having her make friends; instead, she would just like to get through the day with a lesson learned and a smiling face, and prays for it everyday. She does not feel so lucky and feels guilty because of it. She tries hard everyday to stand up to autism, but gets defeated most of the time—autism for her is just too tough.

This mom also has an outgoing personality but doesn’t make friends very easily, autism defines her daughter just that much that it becomes hard to make and keep friends.

This mom does not go to birthday parties, because she is not invited; would go on vacation but it's very stressful rather than relaxing, so it's avoided at all cost. Her daughter can’t play well with other kids, ever, and this fact is a long running heartbreak, among other things.

Life would be perfect if only her daughter could have a life.

Bachman's Pretzels this Halloween: from Autism Speaks

Raise Awareness on Halloween

This Year Bachman's pretzels come in snack sized bags convenient for handing out this Halloween instead of candy. 5% of the proceeds from purchases of Bachman’s special Puzzle Pretzel will be donated to Autism Speaks. Click the following link to find local stores that carry them:

http://www.bachmanco.com/puzzlelist.htmlIf you have any questions, feel free to email us at greaterboston@autismspeaks.org.

Boston Walk for Autism: from Autism Speaks

Greater Boston Walk Now for Autism 2008Sunday, October 19, 2008Suffolk Downs, East Boston, MARegistration 9:00 am Walk 10:30 am

Greetings
If you have already registered to attend the big event on October 19th, you will soon be receiving detailed information for Walk day. You will also find some Frequently Asked Questions below. If you have not yet registered, please visit: www.walknowforautism.org/greaterboston or call the Chapter office if you need assistance. 617-924-3300. Donations: When you collect checks for donations, please be sure to include the Donation Tracking Form which can be found online at:http://www.walknowforautism.org/atf/cf/{ed421eb4-f3f0-467b-b6d9-6f709dd02e5d}/Donation%20Tracking%20Form%20for%20website.pdf You can collect checks and turn them in on Walk day, or send them any time to our processing center at the following address. Please note that it can take several weeks to process (due to the wonderfully large amounts of donations coming in from Walks all over the country!) and be credited on your web page:

Send forms and checks to: Autism Speaks, Donations Processing, 5455 Wilshire Blvd , Suite 2250 Los Angeles, CA 90036

Please note: Your Registration # is the same as your Walker ID #.

Frequently Asked Questions About the Greater Boston Walk:
1. How long is the actual walk?The scenic Suffolk Downs Racetrack is 1 1/4 miles around. Some people go around once, others twice. You do not have to physically do the Walk if you'd like to just raise funds, attend and enjoy all of the festivities of the day.

2. Does everyone have to register prior to October 19th?Yes, we would like all participants to registers online or via the phone so that we have enough food, t-shirts, supplies, etc. on Walk day. Also, when a person registers they will receive mailings and e-mails with important items and information they will need for the event.

3. What goes on at the Walk?We will have music and entertainment, food from Uno Chicago Grill and other contributors, lots of children's activities (and also a quiet area) and a Resource Fair with many autism related programs, services and product representatives.

4. Do you still need volunteers?Yes, we need many, many volunteers to make this large event run smoothly. Know any high school or college students who need service hours? Please encourage them to contact us at greaterboston@autismspeaks.org or call 617-924-1225. Individuals and groups are welcome. We have lots of available and will be sure to make volunteering fun.

Team Captain Checklist:Use this checklist to ensure that you have completed all of the steps necessary to have a successful Walk Now for Autism team this year.Make sure all team members have registered themselves on-line Involve your company/employer Did you email your co-workers to join the team? Did you involve your boss to rally your company team? Have you asked friends, relatives and neighbors to join you? Encourage all team members to be active fundraisers for autism research, awareness and advocacy Email or call team members regularly to answer questions and check on their progress Create team t-shirts, buttons or a banner to increase your visibility on Walk day

Falling Through the Cracks

I have this one problem about my son. As you know he has mild autism and he is developmentally behind his typical peers (I guess?). I mean I know he is not academically level with his peers and he is in a special needs classroom most of the day. But I really do think that every year he is making significant gains. At least we notice at home. He talks to me about everything, but I know he doesn’t do this at school. His language skills still need some refining, but he’s coming along. He loves to ask questions (at least to me) and likes to learn about things: ask him about any animal, he’ll know it all. He reads very well and we encourage him to do so... So, life is good, until we see someone he knows from school in the supermarket. Like yesterday afternoon.

He will be moving along with me, most of the time pushing the cart around and freely selecting his foods. Then "the big shut down." I already know the signs. He either has spotted an old teacher, aide, or classmate of some kind, and it’s like he’s a different, more challenged kid. Ugh!!

No wonder why teachers and aides don’t believe me when I say, “He’s not as disabled as you think.” (defend, defend, defend) When I say shut down, its almost like he can't even keep up with me when we walk down the aisle. He certainly no longer talks. Usually he rules the roost when we shop—telling me what he wants, taking over the shopping cart, there is definitely a bounce in his step. Just like at home, he is so independent and can do everything. So I'm thinking that he "acts" disabled either because he is shy or he is getting away with not working to his fullest potential at school (you know: the "label thing")--I’m thinking the latter.

I know this because one day an old aide of his spotted Nick at the market and came up to me and said , "Wow, I didn’t know Nick could even talk. " Jeeeeeeez!! Can someone throw me a bone? I spend so much time looking like a crazy woman trying to tell these teachers, aides (or any stranger who will listen), that he is doing great, understands quite a bit, and can talk, talk, talk our ears off. Okay, sometimes he obsesses about topics but he is getting better at having good conversations with us.

The difference between school and home: at home he can open a can of anything and microwave it and have it for snack, put his dish in the dishwasher and take out the trash. Then go to his room and hang up his clean clothes and send the dirty ones to the laundry room. He could do his own laundry if my washing machine knob wasn’t broken off and required a pair of pliers and a little good luck to work the darn thing …

And at school: “Well we would like for him to learn to at least clean off the counters …”

WHAT!!!

And the latest “easy” work coming home from school doesn’t impress me one bit!!


Next year is high school for him. I am starting to look for an alternative school than the “life skills” program that he is currently in. Maybe Tech. Ed?

Anyone going through the same thing—that their high functioning autistic kid is falling through the proverbial cracks? Any recommendations?

Coming Home Again

I had a dream about something that will soon be a reality. Well at least half the dream will be, I hope.

I dreamt that Meghan came home for her first weekend in two months. This dream is the result of what I know will soon happen. We recently had her IEP meeting and one of the key points was arranging for the bus company to schedule her trips home from school. She will start coming home every other weekend. (We will still visit her at school during the off weekends.) This will be such a nice schedule. And I look forward to her coming home again and I’m obviously thinking about how she will react to being home. Will she bounce right back and trot around the house as if she had never left; or will she act like a complete stranger and wonder when she’s going back “home.” Yikes!

In my dream she walked in through the front door for the first time but I couldn’t completely enjoy the moment because a sales woman was also at the door--selling encyclopedias, no less. I tried to cut her off without being rude or slam the door in her face, but she proceeded to entertain me before the big sales pitch and started doing acrobats in my front yard; like a gymnast. Doing flip after flip after flip; forward and backwards; I must say she was very good. While this woman was flipping in my front yard, I was also trying to look around to see how Meghan was doing and reacting to being home. I found her running up the stairs but couldn’t see her face. I think she had a bounce in her step, though, so that was a good sign.

But the darn gymnast/encyclopedia sales woman was still flipping in my front yard. Until she finally says: “Why aren’t you going to buy my encyclopedias?”—cutting right to the chase—oh good! I explained to her, as I do with a lot of annoying sales people, that I have handicap children and their therapies are putting my right under (cue sad face). Yes, pulling the old sympathy card, so what if it’s pathetic; it’s effective most of the time.

Then I proceeded to tell her of the two-year plan my father was on to pay for encyclopedias for us when I was a kid. We would get one a month until all A-Z encyclopedias were in our bookshelf. Then we would pretend to be happy as a clam and read them here and there, for appearances, of course; until one day all we were doing was dusting them as they sat in their designated spot in the shelf looking all pretty from A-Z.

So I told her: “Who needs encyclopedias now, anyway; we’ve got the Internet.”

“Become a gymnast!” And then slammed the door in her face.

For all you dream analysts out there, what’s up with the acrobatic sales lady anyway?

Having Fun with Jenga

I can honestly say that I’m the happiest mom right now just watching my boy do the simplest of things. Or play the simplest of games, as he has been doing for the last two days: playing Jenga. At first I played about a 100 games with him (okay, I’m exaggerating) then his dad played, too; and at that point, I was thinking of kidnapping poor little Jenga and holding it hostage, the ransom? Play any other game, please, any game—like scrabble—it comes with wood pieces, too, you know!!

But then I thought better of the sociopathic little game of mine because this boy is having much too much fun with Jenga (his newest best friend?) and why upset a happy boy. Instead, I should be (and am) the happiest mom right now. In the past he might not have played appropriately with Jenga, and made Jenga do things that Jenga just shouldn’t do. But he is playing the game, even on his own, quite well and, more importantly, he is having fun…and it’s age appropriate too! Yahoo!! It’s the little things in life, isn’t it? He is also getting good hand-eye coordination out of the deal, too—I must boast! Not that he needs better hand-eye coordination, given the fact that he is an expert (proud mom talk here) at video games. Games which cost 50 bucks to buy and only last one week or less before the boy beats the game (that means it’s over) and it goes—bye, bye— into gaming history and stored in the armoire for safe keeping. That armoire is banking some big bucks let me tell you!

So Jenga can stay—all good! Scrabble? I’m still working on it! Nick just can’t seem to get past the fact that the (also wooden) pieces have letters on them and that you make words? “That’s not a game, that’s work.” Yeah, nice try MOM! Like I invented scrabble or something.

As he's getting older... it's getting easier and better!! And the little things count so much more!

What We Need To Know and Teach Our Kids

I hope that you never have to meet abuse. Not only for yourself, but, especially, for your kids. I think there is nothing more hostile than abusing a child—physically and verbally, because there is no difference—one bruises the skin but they both bruise the spirit and the soul.

Abusing a child is cowardly; abusing an autistic child who cannot speak to defend him/herself is unconscionable.

Once upon a time, I didn’t know that my daughter’s bus driver was verbally abusing her. I didn’t see the warning signs—I should have.

She would get on the bus just so early that I thought her hesitations were more about the ungodly hour, not the ungodly monster driving the bus.

One day I drove to her school at the same time that I knew her bus would be arriving. I parked across the parking lot and watched her bus from afar. I rolled down my window and listened; not sure what I would be listening for, but I think there are just some parental instincts that just seem to take over. Did I actually think that I would hear or see something horrible? No! I really didn’t think I would. But when I heard the screaming coming from the bus and saw the driver hovering over Meghan, I became paralyzed.

My body pretty much just shut down for those few seconds; I couldn’t breathe; I couldn’t move; I just sat there for those brief seconds taking it all in: Stunned. Shocked. Distressed. All my fears were coming true; no matter how much time I had spent advocating, protecting, and fighting for her rights: my non-verbal child was being abused.

I got out of my car and walked over to the van and told my daughter to come out. I grabbed hold of her and hugged her (at that age, I could still pick her up and carry her) and told the bus driver what I had heard and seen—and told her exactly what I thought of her: I called her “an abuser,” and that she should look for another line of work.

I told everyone, from school personnel to the bus company, what I had witnessed: that the driver lost control and screamed in Meghan’s face to stay in her seat (even though the van was already parked) and, remarkable and unfortunately, no one “seemed” that surprised, and the bus company would simply replace Meghan’s driver—but not dismiss her from being a driver. (“No thank you, I’ll drive her!”)

Not long after that incident, another incident occurred at the same school. Another parent was walking down the hall with me after we had volunteered together in our children’s classroom—she had an autistic son. She looked at me as if she wanted to tell me something but was holding back, until she finally said: “I have to tell you something that I had witnessed.” She told me that a few days ago one of the aides was sitting outside the classroom with Meghan (Meghan was obviously non-compliant) and the aide said to her (and in front of Meghan), “Meghan is being a bitch today.”

Again, another moment added to my reservoir of pain. I could neither breathe nor move; as if I had just been punched in the stomach and I was bravely trying to recover. I thanked her for telling me and told her that it was the right thing for her to do; because, she told me that she was wavering on whether or not to even tell me. Interesting!! The next day I officially withdrew Meghan from that school, even though we had no other school to attend—at least at that moment. (Oddly enough, it was a school with a good reputation.) I told the school psychologist what I had heard and he was notably shocked and disgusted; but, to this day, all I know is that both the teacher (who was not talented either) and all the aides were demoted to a preschool class at the end of that school year. I know nothing else.

I know all too well about the realities of a non-verbal child, or an adult, becoming a victim of abuse (both verbally and physically) and it horrifies me (as it does you). And I just want to lock my daughter in her room and protect her forever—but I can't do that, now can I? It happens more than we think; in a lot of cases, it remains silent and unpunished.

http://groups.msn.com/TheAutismHomePage/autismandsexualissues.msnw

http://www.articlesbase.com/mental-health-articles/sexual-abuse-in-the-autistic-world-492820.html

Kids With Cell Phones Do The Darndest Things!!

Oh, boy. OH, BOY!! This is exactly what I said when I saw this one boy today. Now if this doesn’t scare you, I don’t know what will??

First of all, it was a beautiful, warm, sunny day today so we were hanging out at one of our favorite beaches. It’s a beach with an adventure walk and wooded trails that wind down to a boardwalk which spills out onto a beautiful, sandy beach. I took some photos of Nick. Climbed the rocks—lots of rocks on our beaches. Watched two scuba divers take to the ocean. Nice!! Relaxing!! Until we pulled out of the beach's country road and onto a much busier road and saw a sight that just stunned us.

We spotted a young boy riding his bike---on a busy road---traveling fast---while talking on his cell phone!!!!

Ugh!! Sure. We can all say that we are guilty of doing the very same thing while we’re driving. Some even admit to text messaging while driving! (How do you do that, by the way? Uh, never mind ... I don't even want to know!!)

But the "problem" is that it looks like our kids are watching, even the ones who are under the legal driving age! And since they all have cell phones, too?

This should scare you even more: This past study by University of Utah psychologists showed that motorist who talk (even on a hand-fee cell phone) are equal to those who drive drunk. As some of you have probably heard, as I have, through similar reports. So ...

I drove away thinking that I had just seen a drunken boy riding his bike---on a busy road---and riding against the traffic---but I guess that's what you do when you're drunk!!

Some Things In Life Should Remain A Mystery

Junior year Psychology class was one of many classes that I remember from High School. On one particularly interesting afternoon, the teacher told us: “These are the best years of your life, so enjoy them because after this--it’s over!” Not something that a psychology teacher should be telling young, impressionable 17 year olds who are neither wise nor emotionally mature enough to handle it.

One of the students, and a close friend of mine, looked at her incredulously and said, “Well then Mrs. T., I think we should just throw in the towel because if it gets any worse, then forget it!” I looked at Mrs. T. the way that I look at everyone who strikes my interest; I smiled at her and was eagerly waiting to hear how she was going to crawl herself out of the massive hole that she had notably dug herself in.

She stared at this student and made a sound that resembled a nervous laugh and fashioned, what seemed to be, a constipated-like smile, and proceeded to say:

“What I mean to say is that you should consider yourself lucky that you are living a charmed life right now; you are living in a nice, small town protected from the harsh cruelties and realities of life and attend a school with a wonderful reputation … ” (Note: memory may not be as good today as it was then, but this was pretty much the gist of her comments.)

It is interesting how I never forgot that moment and those words. It’s funny how some thing just stay with you—one of the powers of being a teacher, I guess—hear that all you teachers?

I remember this not only for her apparent misstep in trying to teach immature 17 year olds the true meaning of life and the burdens and responsibilities, therein—because let’s face it, if she hadn’t recovered from that little fiasco, then the headline in the morning paper could have read something like: Mrs. T’s 6th period psychology students found dead in murder suicide. Mrs. T. (Psychologist) can you explain this??

I remembered her words, now almost 25 years later, and thought about them often while I walked through the years of my life; through all of the ups and downs and the harsher discoveries that I had to face—and learn from. Looking back, I think she was right in some respects and wrong in others. But I do know what she was trying to teach us: that we needed to appreciate our “easy” teenage life (in retrospect)—for the short time that we still had them; but, sadly, that lesson was just too big for teenagers to handle—there are just some things in life that should remain a mystery.

I did see Mrs. T. again at a restaurant in my hometown a few years ago; she was a frail, older, grey-haired woman, and she was peacefully sipping her wine while staring out into the harbor. And when I was approaching her table I thought about reaching out to her and delicately touching her shoulder to say hello. I was certain that she would remember me, as I am certain that all teachers, likewise, remember their students; but as I approached her table I thought about what I would say to her. Do I tell her that I understood what she was trying to tell us that day in class—a day that maybe she, too, was going through a tough time in her own life; or do I say nothing more than a quick hello and leave my life a mystery—as some things just should be; or do I merely walk away without ever touching her shoulder or saying one word, and choose to be remembered as the happy, smiling girl who always enjoyed her 6th period psychology class.

So I walked away, as if I hadn’t seen her; but I duly noted her peaceful smile while she looked out into the harbor.