Fearless Folks … autism and beyond …

I haven’t really mentioned much about my personal life other than my two autistic children, I mean that’s what this blog is really about anyway—helping each other raise our special needs kids.  But until now I’ve decided to mention a few things about my life that perhaps is or isn’t truly related.

Those of you who have been reading this blog for some time, or since the beginning, probably have noticed that when I talk about my kids’ father I don’t use the word “husband.”  Why is that you ask? Well that’s because I’ve been separated since the inception of my Fearless Females blog and now on my way to the big “D” word.”

Now don’t feel sorry for me because I am not sad or any other emotion that should come along with this kind of news.  Sure it doesn’t feel good to end something as long as 16 years, but it’s better in the long run. 

One of the reasons why I started this blog was to vent my frustrations about raising kids with autism and to meet others who have similar lives—which I have and thank you!  But the total truth was perhaps more of an escape if anything. 

At the time (about 2 years ago), I knew I would have to place Meghan in a residential school and I was waiting for the right school to accept her—dealing with her constant meltdowns and physical abuse at the same time.  But that’s all water under the bridge now.

When I heard about her acceptance I was thrilled for her but distraught at the same time; placing one of your children in a special school to live is not easy, especially since she didn’t understand what was happening to her.  It can be tragic as hell.

So as soon as she left and was settled I decided that my marriage—which took a beating during the last 15 or so years, was to be settled too.

It was over for so many reasons.  I will not be one of those parents of children with autism to say, Hey, I’m one of the statistics that says that over 70 percent of marriages raising children with autism will end in divorce.  I don’t think it’s fair to my kids to even go there.

But I will say, I think it was just the wrong parenting combination for such a severe issue as autism—and X2 is enough to say, hey, baby, we don’t got what it takes, so let’s move on….

I’m not sad, and I don’t see it as a tragedy.  I’m simply moving on at the very young age of 43 to discover new things, and I’m doing it as peacefully and patiently as possible to protect my kids.

So the Big “D” is for: Discover new things…

You know, Meghan really knows how to work the best of them.  She has this uncanny ability to not only get attention when she wants it, but to also get right under your skin at the same time.

With the snowstorms and heavy rain this season, there have been fewer trips out to the stores (Walgreen’s has been one of her favorites—she gets to have an ice-cream treat there too!!), and less playing on the tire swing in her back yard.  So I imagine it’s been a bit underwhelming hanging out at her (school) home just watching TV or playing games with the girls… but if you know Meghan (and I don’t think you really do), she has a sure-fire way of letting you know when she’s just a little bit bored…

Let me just say, she knows that attacking people is only one way to be heard, especially when she’s frustrated or angry (working on this).  But she’s taken to other tactics when she’s just simply bored and you’re not entertaining her enough, like:  turning up the volume on the television to full capacity.  Oh yeah, that gets her noticed—and she laughs!!  Or how about ripping apart books, especially those from the library.  Ugh!  What about throwing away full pots of food because she doesn’t really like what you’ve made!  Um, double ugh!  Or what she really thinks is funny—a real kicker—is ripping her clothes and other toys and garments for no good reason other than it seems like fun… Triple Ugh and $$$$$. (interject mom pulling out her hair!!!)

It’s her way to say, Hey, YOU, entertain me with something fun to do or I’ll make you PAY!!! (Interject Meghan’s hysterical laughter!)  Sometimes the teachers will just look at her and watch her laugh so hard (obviously enjoying her private joke) that she might just pee her pants… or that drool comes leaking out of her mouth… they laugh along with her thinking that she’s just a “ball of fun…” but I think she’s just orchestrating a way to get you, that’s all!! 

We are all just Meghan’s little fools in life!  She’s got bigger plans for herself, you know!

I had trouble writing this post because it’s just tough to do.

I’ve mentioned this before, the plain and ugly truth, that Meghan has to have ‘Holds” at school.  Holds are necessary for her safety and the safety of the other classmates when redirecting isn’t successful.  (In case you don’t know, a hold is when they drop Meghan to the ground and hold her arms and legs until she calms down—anywhere from 3-10 minutes on average.)

I get weekly updates via a phone call from her assigned house teacher (who I love) and I get to hear if she had a perfect week or a Hold.  And since she has come home with only ONE “perfect week” award (and that “one” we’ve posted on the fridge), then we can all conclude that she gets at least one hold per week.  Not rocket science here, now is it? Ugh!

This past Thursday I was told that her teachers had to get special permission to give Meghan a hold in the van (their bus to and from school) since they can’t put her on the ground, they hold out her hands and legs and block the other kids. (STING).  Again, this was necessary for the safety of the other kids, so I understand this, but it still stings.

I also understand that even though it’s their job, it has got to be tough with what these teachers have to deal with—getting attacked by the kids and keeping everyone safe.  But if there is any sort of comfort for me, it’s knowing how organized and systematic the process is in making sure everyone stays safe. Kind of strange to identify that there is a comfort in this whole ugly truth.  Am I a denial mommy??

But it’s tough to hear that she doesn’t have perfect weeks—obviously!  But I already knew this, didn’t I?  I can’t pretend that all is good just because she has a crew of skilled teachers around her at all times and that I don’t see her most of the time.

But it doesn’t stop me from asking the teacher when she does call: “how’s Meghan” and she knows this is one of the reasons why I ask—any Holds?  But she always tells me that she was okay after the Hold and smiling or laughing or playing silly games… so it becomes less tough to take the news.

It’s just interesting how Meghan still has meltdowns to the point of needing a Hold.  I foolishly thought that after the first Hold she would realize that they mean business.  I thought that Meghan would get a rude-like awakening and realize that she (a 14 year old girl) was not the rule maker and it would be the end of Holds.

Foolish on my part, I guess, perhaps I’m just a dreamer.

But then I start thinking that maybe Meghan can’t control her meltdowns and a hold is just cruel and unusual punishment for her.  But then I think I’m just trying to make myself crazy as a mother has a tendency to do.

I don’t know.  I can’t control Meghan and that’s what makes it so tough.

Nick is in Best Buddies and really doesn’t like it.  He’s also in Anime class twice a month after school as a fun thing to do, but he looks to get out of it every time he has a class.  I think it could be his anxiety issues and his fear of social situations, but if I let him off the hook then he will never do anything fun or learn anything new—especially learning how to socialize.

I remember when I was in high school and I looked to get out of difficult situations and wouldn’t put myself “out there” to achieve new things… I allowed myself to escape when I needed to, and prevented myself from having the experience, whether it was a new class or a social event, I looked for the way out.   Actually, I was brilliant at finding shortcuts and getting away with murder while in school… (um, you know I’m not being literal, right?? Just checking!!).

Anyway, I know Nick is doing the very same thing I did, knowing there is an out and uses it, or at least tries to. 

Put it this way, he recently rented the Ferris Bueller’s Day Off movie, and I knew this could be trouble.  And Yes, he has already tried the “Ferris sick routine” and keeps trying it too!!  Ah, not gonna fall for that one, my boy!!

So I made him join these after school activities, and I make him attend, but I don’t know if he hates them because he hates them, or he want to avoid them because of his anxiety and nervousness.

I remember the wonderful feeling of satisfaction when I had to do something that I wasn’t comfortable with, so there is this upside to this issue that I want Nick to experience—a little taste of feeling proud of himself is such an important part of growing up.

But… when is enough, enough?  Am I pushing or am I being a good mother?

Or am I being both?

Ugh!

Hi Folks, Please read this email that I received from Autism Asperger Publishing Co.:

I came across your blog the other day, and I noticed in one of your earlier posts that you wrote about iPhone applications for kids with autism and special needs. I just wanted to make you aware of something that you and your readers may find helpful.

 

Recently, Autism Asperger Publishing Company released two applications for the iPhone and iTouch. The Hidden Curriculum on the Go! applications are based off of our best-selling Hidden Curriculum One-A-Day calendars. There are two versions: one for kids and one for older adolescents and adults. Each application contains 100 tips that help individuals on the spectrum better understand “the hidden curriculum” – the unstated rules of social situations and norms. Just like you mentioned in your post, these applications are cheaper, more convenient ways of taking along essential information you need for your children without the hassle of bulky books.

 

Please take a moment to check out these applications. Also, feel free to browse our Web site as well.

 

Thanks so much, and take care!

Carly

Autism Asperger Publishing Company

http://www.asperger.net/

Hidden Curriculum On The Go..

carly@asperger.net

AAPC — Winner of the Autism Society of America 2009 Literary Award Learners on the Autism Spectrum: Preparing Highly Qualified Educators by Kari Dunn Buron and Pamela Wolfberg, Ph.D.

 

Thanks Carly!!

iPhone/iTouch original Post

I’ve come to realize that I will never totally get used to sending Meghan off to her residential school, as we do every other Sunday at 12:00 noon.

I will not fool you, I still get that nervous excitement when Meghan walks through the door on those fortnightly Fridays; excited to see her, but nervous about the visit. I’m most nervous about her behavior, and if and when she gets upset, she can be tough to deal with. And if she has a tumultuous start to her visit, then I’m certainly afraid to cuddle up with her or do any activity too close, obviously.

But I’m happy to say that she hasn’t had an explosive episode since the Storm post, several week ago, so yay and knock on wood because I don’t want to ruin it! So her visits, like this past one, have been nice, and happy, and close and snuggly… and don’t get me wrong, she’s also rough on the house, computer and most things she touches, but that is Meghan’s signature—her personality!

The point I’m trying to make is that on Sunday, after her time home (warm and loving), we have to get her ready for the bus to go back to school, and it’s a sad time for us. This past Sunday, while she was laying on my bed playing cartoon network on my laptop, she knew it was time to shut it off to get ready for the bus, and she said to me: “Home.”

I said to her, “I know you want to stay home because it’s a vacation to you, but your school is waiting for Meghan to come back.. You have to go to school, and I have to go to work, that’s how it works, my baby”

What is even more significant about her request is that she said the word Home and she said it so clearly. Meghan is, for the most part, nonverbal, and words do not come easily to her.  So when she said this word, my heart melted in such a big way! Not only because she said a word (she does have other words) but this one was spoken so crystal clearly, and bittersweet.

And after we had this moment, Meghan was all right to get up, get dressed, have a quick lunch, and then get on the bus when it came time. Luckily, because it’s not always an easy process to get her going.  But I also think that Meghan is proud of herself for saying words, like Home, and it’s a confidence boost—a reason to get up with a little bounce in her step and do her job, as if she realizes that she can be just like any other girl her age—communicate with her mom the old fashion way…

And I think hope is in sight, but just hard to reach.

I grew up with distant family members, traveling friends and tourists asking me to repeat this very same phrase:

Park the car in Harvard Yard.

(Hey, like I don’t know what they’re trying to pull!)

So I do, just to amuse them, and after….

“Hey, why don’t you have a Boston accent?”

(for those of you who don’t know, this is a true test that you are, in fact, from Boston…and it’s comical to hear, I guess!!)

And my response is always the same, even to the native Bostonians who wonder why I’m not of the native tongue:

“I don’t know why!” And I don’t!

It’s funny because both my parents speak with the Boston accent. So do some of my aunts, as did my Irish grandmother and Italian grandfather. And at my last high school reunion, it was funny to notice that even some of my old classmates have some of the harsh touches of the Boston accent, as well.

Yuck!

And in case you’re living under a rock and have never heard it spoken, then watch an episode of Cheers, Norm and Cliff seem to have it down pat. And btw, if you’ve never been to Boston’s Cheers bar, it’s not the same bar as in the show. Just so you know.

(And if you’re too young to know the Cheers sitcom, then “good for you” … and I don’t want to hear about it or I’ll send my grandfather’s Italian mob friends after you!!)

I sort of remember learning how it was that people from the Boston area were supposed to talk … Years ago, one guy working at a Starbucks in Boston actually asked me what country I was from. I said I born and raised in the Boston area. He was amazed; I thought it was weird!

Sometimes I think when folks travel to Boston, half the fun of being here is to listen to the Bostonians talk. I learned this from my cousin who is older than me by ten years, and, when visiting from California for the first time when I was 10, sat me down and asked me to say that all too familiar phrase …

When I failed to speak it the way she was anticipating (gee, I hope she wasn’t waiting her whole life for this silly little moment), the look on her face was pure let down if I ever did see one: “Oh, you don’t speak Boston!”

I smiled and pretended not to know what she was looking for, but I knew bloody well, and I’m so sorry to disappoint; I guess I’m not the circus act from Boston that you wanted to hear!!

Thinking about it, the east coast, not to mention the south, seem to have a thicker accent than those in other cities. Of course New York comes to mind immediately. Ugh! In my option, if you think Bostonians have it bad, then try a New York City subway at rush hour! And Philadelphians have a their own interesting accents as well, not as harsh as New Yorkers.

The unfortunate thing about these accents is it’s not exactly like listening to the beautiful language of the Italians or the French … like listening to an oral ballet, as opposed to Boston’s oral interpretation of a hit and run accident. And I’m sure the Italians and French feel that way too! Snobs!

It is interesting though—how we all speak so differently in the U.S. And apparently, once you have a strong Boston or New York accent, like it’s some kind venereal disease, then it’s hard, if not impossible, to get rid of as an adult.

Said one man who asked me the very same question: “I can’t believe you don’t have a Boston accent. Have you ever?” In fact, it turned out that this guy had to take some serious language classes to actually lose his heavy Boston accent, but I could still hear it in some of the words he used, if ever so slightly. Shhh, don’t tell him!

The only thing I can come up with, as some sort of an explanation, is that I grew up 20 miles south of Boston, not inside the heart of the city. So …. but it doesn’t necessarily explain why others, who also grew up in the outskirts of the city at the same time, had acquired one. Hmmm.

Maybe they tried it and liked it and kept it going? Maybe they’re simply lazy and want to leave out the Rs to get to the punch line faster? Or maybe one day my teacher caught me talking with my “Bahston“ accent and beat me with a ruler until I started talking normal, but then told me I would thank her for it one day!!

Well, thank you abusive teacher!

I am certain that that never happened and my kids are proof of this since they don’t (well at least I know my son doesn’t, but since my daughter is nonverbal?) have the infamous signature accent.

But if you’re a tourist coming to Boston and looking for me to say something in Boston, then I won’t disappoint you, because I can switch it on (and pretend) if I choose. Hey, my parents taught me well!!

So, Pahk the kah in Haeved yahd when you come!

And just for Boston amusement (especially if you’re from Boston) click here to learn more about the Boston accent …funny!   

http://www.examiner.com/x-3112-Boston-Day-Trips-Examiner~y2009m2d21-The-Boston-accent-for-Daytrippers

Cheers!

I didn’t know until recently that the world of communication is opening even further for our kids.  Yahoo!  Or should I say Apple! 

If you’ve got the latest version of the iphone (3.0) or itouch, or soon to be getting the new ipad (thinking about this for Nick’s birthday), then I found at least three great apps.  One is more expensive than the others, and one is free.  You can go on and check them out (through the apps store) and see for yourself. 

You know, I need this even more for Meghan.  When we go out, it will be a great resource to go on and ask her what she wants to do, eat, etc..  It’s quick and handy!!  Her communication books are so bulky and rip so easily, and, yes, sometimes we just simply forget them at home or in the car.  Ugh!  And her assisted voice computer always seems to break down and could spend weeks in the shop.  Yes, that is the backdrop of life with communication books and expensive, bulky devices.

Apple gives you an alternative to expensive (rip off) and bulky books!!  I LOVE new technology!!

And I love apple!  And apples too, they’re yummy!!

These are the ones I’ve found, check out:

Proloque2go (the most expensive)

iConverse

icommunicate

and the new free app, Model Me Going Places (from model me kids).

There are ratings attached so you can read what other people are saying before you commit to purchasing the app.  There are also ABA apps and other learning tools, too.  Neat!

And like I said, I didn’t know!!  Did You!?

Check out iConverse here, just 9.99

http://www.converseapp.com/2009/03/01/26/

icommunicate just 4.99 for the app

http://www.icommunicatetherapy.com/home/about-us/about-icommunicate

You know that saying for our autistic kids: one step forward, two steps back. Well that was pretty much Nick’s life this past month. His school had a lock-down drill (kinda like a fire drill, but scarier). Nick came home in a sort of shell-shocked state. I asked him what was wrong, but he didn’t give me a real answer. So, on a daily basis, I would sit down with him and ask him what happened that bothered him. Mind you, he was like a different boy. But I would get the same non-answers over and over again. By the third day I would not let-up, and asked him—again—what had happened; that he could tell me so that I could make it right. He started to cry, that’s how bad it was. I asked him if something bad happened at school, and he said yes. And I thought, Oh holy crap, this boy has been abused! The moment feared by all parents has come to my life….

Unfortunately, the issue with Nick is communication and that it takes him a good deal of time to tell me what’s on his mind. It can be slow—painstakingly slow—and it could take a good 15 minutes just to get one word out of him, and it’s usually the same words over and over. I know that he needs to take his time searching for the right words, while still processing the whole thing; so I knew I needed to practice patience, and a little space… but my boy was slipping away.

So that night I pushed the issue and he finally said, while crying, that school is a scary place. The next day I immediately asked his teacher what happened that was unusual and she reported that they did a lock-down drill. Bingo! I was relieved because it was an answer with a real solution. But I just wished I knew better so I didn’t have to put him through this a second time—just like last year, the same thing happened. So I told the teacher that I would need a heads-up the next time a drill is scheduled (via the principal) so I can keep him out of school. She agreed, and I told this to Nick, and he seemed to feel better about it, knowing that he will never have to experience a drill again. But it didn’t change things. Even my parents noticed the change.

Now, I’m not too familiar with post-traumatic stress disorder, but Nick seemed to have all the makings of it:

He was clinging to either his father or me, even in the house.

He could not be left alone in a room by himself.

He didn’t find joy in the activities he used to love, and laugh about.

Seemed depressed.

He had trouble eating.

I truly thought that I had lost my sweet, happy boy, and over something preventable. I started to relish the Old Nick, wishing for him to come back and thinking that this could be the defining moment in our lives—the moment that our boy had changed and had become sad and broken. Truly, this was how it was during this last month.

But little by little, and over a couple of weeks, he started to snap out of it. His smile came back. He started enjoying his favorite things again with a fun, giddy laugh! And up until yesterday afternoon, he wouldn’t get the mail for me, running just 200 feet to our mailbox—something that he used to love to do on his own. But yesterday I told him that I needed the mail, so please get it for me! He looked at me and said: “Mom, can you watch me while I get the mail.”

That was it! The mystery solved. This boy wasn’t just fearful of the alarms from the drill and the evacuation, he was afraid of the bad guy—the hypothetical bad guy loose in the world was real to him, not just a drill! 

I told him, “Nothing was going to happen to my boy, you’re fine!” He smiled and ran to get the mail—and in what seemed like record time, too! But hey, he got the mail and I believe he’s almost fully recovered. And I thought:

this was my second chance… Someone saying wake up Mommy, pay attention! You’re working with a delicate boy here; don’t screw it up!

I’m sure you’ve heard, the medical journal, The Lancet, linking MMR vaccine with autism, is now retracting the article after all this time.  What do you think about that?

I think it’s a little too late.  It was weird too, because I was just talking to someone about this article and “how it all got started” just a few weeks ago, and now this…

CNN’s coverage here in case you’ve missed it!

http://www.cnn.com/2010/HEALTH/02/02/lancet.retraction.autism/index.html