Wednesday, December 31, 2008

Wishing you a Happy New Year

Happy New Year!!

Tuesday, December 30, 2008

I can't afford my autistic kids

Can someone please explain to me why Children's Hospital audiology (hearing, right?) cost me 500.00 for Meghan to have a hearing test? I really want to know. Is it because they are highly regarded professionals in the world of all things that hear? Or is it because Meghan is autistic and, therefore, costs more?... or is it because they want to rob me blind (and now I'll have to see one of their ophthalmologists, too) and since Meghan goes to these appointments with her school, hmmm ...

What's really interesting and has inspired me to open a bottle of wine and start gulping is that the first test was inconclusive and they want to do annooooooother teeessssst! Sure they do! At 500 bucks a pop, I would want Meghan to have another one too... and maybe a third, and a fourth... hell, why not have her visit every month!!! Or perhaps I just need to change my career? So what does it take to become certified in ringing some bells in various tones???

I'm hearing they rake in the dough!!

This is second to the "ten minute" neurologist at 800.00... Really, that actually happened! Is it me? Do people see me coming and then charge me 100 bucks a minute?? I don't charge 100 bucks a minute, do you?

Or is it that when doctors hear "autism," their price automatically triples ... Is autism just a secret code word for "goldmine?" I'm wondering as I'm getting ripped off.

Or maybe I'm not? You tell me?

Monday, December 29, 2008

Chicken Cordon Bleu, it’s what’s for breakfast…

No, most people know Chicken Cordon Bleu as a fancy dinner plate at some nice French restaurant—or other, but Meghan calls it breakfast.

I know, I know, I’m raising a princess; but she was just so good all week—no outbursts, no hand biting, no bouts of destruction of any kind—you might be thinking “Miracle on 34th Street,” but, no, it was more like “Holly Golightly Does Vacation” (home is like vacation for her) and she was good as gold and ecstatically happy and singing all week. (Note, some exaggeration in the previous.) She went back to school yesterday and seemed ready for it, too. Really! I didn’t have to pull and yank and bribe, and she was easy as pie (and ate pie, too) to motivate and get showered, dressed, and on her last morning (boy, I sound like she’s dying), enjoyed a different favorite for breakfast—pancakes. (And I never want to see Chicken Cordon Bleu for the rest of my life!!) After “pancakes” she waited for her bus to arrive, got on with a hop, skip and a jump (I’m exaggerating again) and even blew us a kiss (not exaggerating), and she was off to school until she comes back home for the weekend—in two weeks.

Wow, right!? But I’m no fool. I know this week was a good week because of Christmas and all the treats that she enjoyed, but she’s still demanding and quite a bit of work when she’s home. I hope that doesn’t sound cold, but I know my girl.

I’m just so glad that she enjoyed herself, and we enjoyed her, as well; these are the moments to remember and cherish—and they do come! And because it was such a successful week, it was sad for us on her last night home and knowing that she will be gone for another two weeks... I was sad and felt like crying as I snuggled with her underneath my bed comforter, while we watched a cartoon show that she likes, and I briefly thought to keep her home for another week—since Nick is home from school and her vacation is when we say it is… but, then, I quickly dismissed that thought with a wave of my hand, because I knew that a good week doesn’t mean another week would be good for Meghan.

So you might be wondering why just two weekends a month home for Meghan? We chose alternating weekends so that we could have more time with Nick on the opposite weekends—take weekend ski trips, sightseeing, hiking—these things aren’t so easily done with Meghan, nor does she like doing them. And in the past, we would have had to forgo trips to anywhere (or at least plan heavily around Meghan) for fear that she would be difficult or non-compliant (A plan B was always in the works!)—A lifestyle that was neither good for Nick nor offered him much of a life—or us, for that matter.

Two years ago in August, we took Nick to Vermont for a little weekend away (or one night, really). It was the first time we ventured without Meghan and I did feel a pang of guilt for keeping her with my parents and my brother, but it was for Nick and we enjoyed it tremendously. We even laughed about it; because what we ended up doing and visiting were things and places that we could never do or go with Meghan, like swimming in the river or watching glass blowers make fine glassware in their “factory” (as Nick called it) and above all, actually wandering through the glassware gallery and viewing all their work. Let’s face it, one tantrum with Meghan and we would have been writing GREAT BIG checks and banned for life with our mug shots posted in the gallery entryway (or posted up at the state line) looking like: Husband and me: crying because of big check writing; Nick: smirking and pointing to Meghan; Meghan: laughing hysterically, and, incidentally, the best darn photo that I would have ever seen of her… and Reading as caption: Crazy People Alert, Absolutely No Entry!!!!…

These are my daily thoughts in life by the way!!

So this schedule allows us to keep a good balance between the needs of both my kids, and Meghan seems to love it as well. She has so much going on at school with the activities there, she even has school on Saturdays—which she loves.

So that’s my story… and I’m sticking to it!!

Saturday, December 27, 2008

Teaching the Spirit of Christmas

Every year it’s the same, but it has gotten a lot better than it was. When my kids were real little, they were seemingly underwhelmed by Christmas morning as if they really didn’t care for it (opening presents, my excitable voice hoping that it would become infectious) but they would be opening presents like it was a chore. So the following years I would talk to them about Christmas, Santa and presents. On Christmas Eve I would make special Christmas cookies with them, mention Santa and his sleigh, buy them new pj’s (as my grandmother used to do for us as a tradition) and read Twas the Night Before Christmas to them as another start of a tradition to try and evoke the Christmas spirit—of some kind.

It wasn’t until Nick was around 10 that he started enjoying Christmas--or at least it started to show on his face. He seemed excited about opening presents—and wanting to—but it was still nowhere close to how excited my siblings and I were on Christmas morning—but getting there.

Meghan, on the other hands, could simply go without Christmas and presents, she just didn’t seem to care … and it certainly didn’t warrant enough excitement to actually get out of bed as early as 7 am. No way, go away!!

The last two or so years, including this year, Nick has really been into it. It was so exciting to see. I mean don’t we become parents just to see our little kids excited faces on Christmas morning!! This year when we got the tree, he decorated it almost all by himself … after I wired it up with lights … and he hung the stockings with care … and talked about Saint Nick who would soon be here. ;)

We have also been teaching Nick to buy gifts for others as well as anticipate them for himself. Gift giving is still a little harder for Meghan to understand, but we’re working on it. For the most part this Christmas season, Nick’s questions have been just a little unusual: for instance, when we listen to Christmas songs (which he loves from year to year and one in particular called Here comes Santa Claus…), he asked me why Jesus Christ was mentioned in a song because “That’s a swear word??” It took a few days to help him understand that this was okay in this circumstance … forget about religion school … and church is a castle, right? Ugh. It’s hard enough teaching Nick about Christmas and the Christmas spirit, but religion is a whole other abstract vs. concrete obstacle to encounter, but I try. And I do feel a little regretful that I didn’t teach him religion when he was younger. I grew up going to Sunday School and church every Sunday, even though I didn’t really believe--it was forced upon me. But it’s up to Nick to decide for himself if he believes in God, so I have been teaching him more…

And I must add that this year, in particular, both my kids were into Christmas … even though we still had to drag Meghan out of bed as late as 8:00 am—she came! And they both were excited about opening their gifts with smiles on their faces. And Nick noted that he gave us presents, too!! Sooo nice!

Now all I have to say is Yippee! It finally came… after 14 years of trying, the Christmas spirit is finally within and I have the rest of my life to enjoy it with them, too.
So, a little (lot of) patience and a better late than never attitude when raising special needs kids is the discipline!

Wednesday, December 24, 2008

Which side does the stamp go on..

As the holidays are approaching you would think that I was oblivious. Nonsense. I love to go Christmas shopping during the last two days. It’s festive, exciting, and deal-catching. I walked into kbtoys (going out of business) and found a few things for Meghan that were under 10 bucks—a few extras. But before that, I had Nick with me and we had a few stops to make. One was getting his haircut and while he was doing that, I was busy on their comfy couches doing my Christmas cards. Yup, that’s right. I was writing out the envelopes of my Christmas cards and had my huge address book stuffed in my bag. No better time than that last possible moment, dontcha think? Well, actually, they had just arrived in the mail—late, or later than usual for me. But I take great pride in the fact that I got them out in time for Christmas—at least most of the people on my list will receive it in time. (Then again, it is a holiday card—good for another week!!)

As Nick was sitting with me, he was looking handsome with his freshly cut hair. I asked him to help me by stamping the cards. I showed him how to do it or which side the stamp goes on with one example and he was good to go. I finished them within the half hour, with great speed and an extra helper (Nick). And the hair cutting people were quite amused. Then when I gathered the cards I noticed that the last 10, or so, were stamped on the wrong side—the left and not the right. At first I thought about it and wondered where I went wrong. He was doing fine when I first watched him and then BAM he switched sides. I gently brought it up, and gently is the optimal word. And he said, oops it’s just a mistake. A mistake that didn’t have to happen was what I was thinking. And a mistake that required me to actually have to stop in at the post office (fight the lines) to make sure that this was okay instead of just dropping them in the mailbox.

I’m still trying to figure it out, though. I think that Nick becomes lazy with his work is what I’m thinking. He starts off fine and then he becomes disinterested and lazy about “the work.” He does this with his math homework as well. He starts off trying and then the second half of his paper he gets the answers wrong and we have to go back over them. Perhaps it’s just repetitive work that he finds boring? The only other explanation was that he just didn’t think it mattered-- like a sticker. I couldn’t probe him about what he was thinking, because he’s too sensitive and he would have become defensive. And since we were out Christmas shopping and having some fun, I didn’t want to make him feel bad. But it does raise a very big red flag. How is he supposed to hold down a job if he’s lazy about working in general? Will this change for him? He’s 14 and does not have any skills besides talking about superhero movies and playing video games. So I’m a bit worried.

Incidentally, I walked into the post office and the line was long as I anticipated (not sure why, really?) so I started asking the people in line if they thought it was okay. No one knew. But they all became just as curious about getting the answer as I was. So as soon as a free postal worker was available, everyone in line brought it to her attention. The postal worker smiled and took them from me and told me that she would re-stamp them.

There’s the answer.

And today seems like a great day for making cookies (chocolate chip with chocolate kiss) as we do every year, but first, I will fight the crowds and the crazies and see what deals are out there today!!

I’ll do the wrapping at midnight! ;)
**Cookies: make chocolate chip cookies from scratch, add Hersey's kiss last 2 minutes of baking...sooo good especially eaten warm!!

Tuesday, December 23, 2008

The Big Three Words of Advice

On another blog that I read the question was asked—many weeks ago— “What woman can do when they’re young to be happy later in life?”

I bring it up now because responses just keep pouring in. It’s definitely a real hot button. The question comes from the study that women start out (in their 20s) happier than men, but when women hit their 40s (and onward) they are not as happy as their male counterparts.

The advice given to women to ensure their happiness in their 40s and beyond were these (real hot buttons) words of advice:

--Don’t have kids (if you want to be happier later on)

--Keep your career (if you want to be happier)

--If you are divorced, get plastic surgery (will make you happier)

It is assumed that women are placed with the most responsibility in taking care of the kids, and by deciding to give up their job or work less, therefore, making less money and not being in good financial shape when (if) they do get divorced. And when you do reach that age (40 something—I just turned 42 myself) then you better start up with the Botox and the boob jobs in order to compete with the younger versions of YOU.

I agree with keeping your job or at least one foot in the door at all times. I had always “planned” on keeping my job—I was a business and technical writer for a large investment firm—but having had two autistic children one year apart, I became so overwhelmed with two Irish twins and a demanding job, that the only thing I could do was quit. I know in hindsight that it would have been too difficult to work (even part time) and deal with autism, but I do wish that I kept a door open, in some way, to make starting over a bit easier since my kids are older.

And I think if women want plastic surgery, then fine, but not because they “have to” in order to compete. I guess the theory is that if you look better then you get more opportunities and better men.

And as far as having kids, I think that women would lose out of a great experience. It’s a personal choice, but choosing a career over having a child(ren) is sad to me. These are the experiences in life that make you smarter, wiser, stronger and selfless—especially if you have special needs children.

So for someone in her 40s, I am perfectly happy. I do make less money than I did when I was in my 20s, and I look older, but I can't say that I'm not happy. Actually I think that I'm happier because I know myself so much better and am so much more confident and willing to take more risks and try new things...

What do you think of these “The Big Three” words of advice?

Here is the link for more..

Sunday, December 21, 2008

Happy (20th) Birthday to me!!!

my cake with 20 candles------(stop laughing!!!)

My son doesn’t like birthdays; not for me, not for himself, not for anyone he loves because to him it means that people get older and then they die.

I think this fear comes from my grandparents. They lived into their 90s and died within 3 months of each other. But before they died, my son (who was around 8 or 9) would visit them with me on a few occasions, and the very last time he saw my grandmother, she looked really old to him … scary old!!

And my grandfather could barely stand and slept most of the time. It was tough to watch because ever since I was a kid he would be so active and always doing something rewarding for himself. This small Italian man, named Americo, wasn’t much of a student but a talent in so many other ways. He was a ship builder and built a huge boat for his family. He was a plumber to support his family, he was a great Italian cook, and, in retirement, he taught the elderly people at the local nursing homes the craft of woodworking. And above all, he was a boxer. He loved boxing and tried endlessly to teach his 5 grandchildren to love it too. But we didn’t. He would painstakingly try to give us boxing lessons (and accordion lessons too, shhh, don’t tell anyone) but we hated it and would let him know in our own way. (Why he couldn’t teach us Italian was lost to me!!)

But while this frail, old man was trying to stand in his hours of death, he jabbed Nick a few familiar boxing moves with every bit of strength he could muster and Nick responded back with the same moves and loved it—his very first boxing lesson. My aunt yelled to Nick to be careful…but my grandfather waived her off and enjoyed those few moments with him, and I’ve never seen this little Italian man happier. He finally got his boxer.

After that day, Nick started asking me a series of questions: like “Why?” "Why do people get old and wrinkly? I don’t want you to get old and wrinkly because that means you will die.” He then started obsessing about age and didn’t enjoy birthdays, even his own. I tired to explain to him that age doesn’t happen overnight, it takes 100 years. But the theory of age and time is still abstract to him. So we enjoy birthdays in a more subtle way; like having lunch or dinner at a favorite restaurant, or at my home with a few family members and cake and presents and a cross my fingers promise that we can do our previous age over again.

So this morning, as one might note, he was not so pleased to say happy birthday to me. And when my parents called me for their annual song-singing of Happy Birthday, and loud enough for everyone in the room to hear, he looked more horrified than happy. But he did ask how old I was. So I asked him how old he thought I was.

He paused and then paused some more, and said 20?

I smiled!!

And it's snowing again in Massachusetts!!

Saturday, December 20, 2008

On Behalf of Zoo New England -- Fun with kids in Boston

Every Saturday in January and March, 11:00 a.m. – Noon, Franklin Park Zoo

Escape the winter chill and bring your little ones down to the always-balmy Tropical Forest for family entertainment provided by our professional children’s entertainer during our Saturday Sing-a-Longs! Wildly popular children’s entertainer, Su Eaton, will perform every Saturday in January and March. These events will be held in the Hippo Theater at Franklin Park Zoo and are free with general Zoo admission. Saturday Sing-a-Longs will be held January 3, 10, 17, 24 and 31 and March 7, 14, 21 and 28.

Go Ape during School Vacation Week! February 16 – 20, 11:00 a.m. – 3:00 p.m., Franklin Park Zoo

Set off on a tropical excursion during February school vacation week and bring your family to Franklin Park Zoo for an ape-themed getaway! Learn about these incredible animals by visiting our gorilla troop at the Tropical Forest. Children of all ages will have the opportunity to participate in a variety of creative and educational ape-related activities.

Friday, December 19, 2008

Sexist boy of mine…

While having dinner at my parents’ house Nick will be sure to bring his plate to the kitchen, scrape his plate in the trash and place it in the sink, WITHOUT being asked and regardless of the fact that my mother says “Oh, that’s okay, Nick, you don’t have to do that.” (as a grandma would say). I tell her Yes, he should do that and beam with pride because he makes me look good...Well doesn’t he?

But don’t be fooled. My boy will not do the same for me at home. I have to remind him to clean off his plate and place it in the sink, and this request usually follows with a “Ugh” and “Heavy Sighs” and the usual: “Why do I have to work, I’m done with work”…(translation: he works all day at school so give him a break). One day while my brother was over for dinner, Nick told him that clean up and doing the dishes was “Mom’s job.” Nice, ‘eh!!

Oh Boy, did sirens go off in my head. Please note that I am against the notion that men and women have their specific jobs in the household. I don’t care if women are stay at home moms (I don’t like the term: homemaker), men should share in the cleaning of the home as well. I cringe when I walk past the toy vacuums and ironing boards in toy stores… and I don’t think that people are buying these toys for their sons. I am not saying that I’m totally against gender specific toys like Barbie (as it is a real issue for some women) but I think if the child wants the Barbie then fine … it’s a personality thing in my opinion. But don’t eliminate the football from her toy box, either.

So I started making sure that he takes out the trash and cleans off his plate. I did start having him empty the dishwasher, but that, to him, was like asking him to build the pyramids of Egypt!! My point is that he complained through the task every step of the way, and because he is a bit of a slow worker, it did take him quite a while. The bad mother in me just couldn’t take the complaining for the long 15, or so, minutes it took him to complete the chore (with my help) … So, I will just stick him with trash, mail, hanging up his clothes, and Windex-washing windows duties for now, because they offer quicker relief and a feeling that he has accomplished something sooner—and then come sooner smiles and sigh of relief when he is done. And I will work him up to dishwasher duties, eventually. But I am relieved that he knows to help out at my mom’s house, so that’s something!!

But I do know where he gets his sexist attitude; it comes from me doing the housework because I work at home. And also because I like a clean house (as my son does) and my husband couldn’t care less.

Speaking of housecleaning, how's this for sexist: Have you heard the one about the maid and her skimpy little French number?

No joke … it's real. It's about a businessman who needed more money and hired his wife out to clean houses wearing a skimpy maid's outfit, apparently business is boobing ... I mean booming!

My opinion: if the woman thought of the idea herself then great, but it was her husband who did. What do you think?

Thursday, December 18, 2008

School Vacation Week and Anticipating a Problem

Do any of you have trouble motivating your child to do things other than laying around the house in their pjs, watching too much TV and eating waaaaaaaay too much for their own good. If this is your kid (too) please tell me some of your strategies in getting them to get showered, brush their teeth and get dressed… and leave the bloody hell house…

We already use a social story but it’s the dragging and pulling and “working her” for hours that is the problem. The star reward system doesn’t work in our house…it only works at school where it’s extremely structured.

Then if we do eventually get Meghan out and drive to our destination, she won’t get out of the car—she’ll stay put if she doesn’t want to go in. She’s what you call stubborn, determined and sometimes even ((scary as hell.))

For instance, next week we have two events that we have to attend. One is my birthday lunch that I am inviting my family to enjoy with me at one of my favorite restaurants. The very last time we were there, Meghan scared the waitress, I won’t tell you what she did because it was kinda gross and very hard to write… but all of the food that the waitress was holding on her tray went crashing to the floor. Then she threw her coke in my father’s lap for no reason and then she tries to dirty her hands—anyway she can with food—so that I have to take her to the ladies room (for the 5th time) and that’s even scarier because she likes to clog up the toilets and make a flood—really, I will be in the same stall with her and be fighting her off from the toilet paper—people must think we’re nuts… At some point I just motion the bartender for a martini... and just start drinking the hard stuff.

And Christmas day we go to my parents’ house for dinner. If Meghan doesn’t want to stay there or is all done with the visit and we are not, then this clever girl starts breaking all things that are glass, porcelain, even china throughout the house. Last year, she starting plucking the glass ornaments from my parents’ Christmas tree and smashing them on the floor—how’s that for an attention getter? She’ll even go into the bathroom and unscrew the light bulbs and smash…I certainly don’t want to have to leave after her behavioral performances, to show Meghan that this tactic of hers will not work, but I can’t have her breaking things.

Do we sound dysfunctional? And I really have to say that moments like these really do make me appreciate my son, because he is so easy in comparison and I am really lucky and glad to have him.

I know this is a tough one, but any ideas to help make this week’s school vacation not so hard, loooooog and martini-drinking worthy?

Wednesday, December 17, 2008

A life that seems to mirror your own

I love Christmas! Not only because it is a joyous time of year with winter snow, sparkling lights, and gift giving, but I also just love the little extra reds and greens that are unevenly intertwined within my daily mail’s bulge of bills--the holiday cards. It’s so bittersweet, but my son only sees it as sweet!! As he should!

It’s a form of catching up, especially from people that I don’t call or visit as often as I would like (isn’t if funny how we say that: “as much as we’d like!”). Anyway, most of the cards that I receive (and give) are those with photos of their kids. To me, it’s a fun glimpse into their life—a little peek—and to see how much bigger and older their kids have grown. Some of these yearly cards I keep from year to year, and I have half a mind to show you a snapshot of that drawer of mine!! There is one family that I especially like to receive a card from; it’s always the same picture from year to year (same pose in front of their tree). This family is very unique because it’s the family of a friend whom I've known for over 20 years. We talk here and there, meet for dinner on occasion, and when we do meet up or talk, we know what to say and pretty much will pick up where we’ve left off—like time hasn’t passed.

The very last time we talked I was troubled. It was a month before Meghan was going off to her new school (July) and we had them over in June for a barbecue with their two kids. My friend and her husband were rubbing my shoulder and hugging me and offering me their support, encouragement and good friendship. But then again, this is what friends do, especially a friend of more than 20 years. But don’t get me wrong, this wasn’t the part of our visit that was troubling to me; the troubling part was how I noticed that her 4 year old daughter (a child that took years to conceive) was not developing the way that children her age should develop.

She was not responding to questions, she would not respond to direction, she would not play appropriately with toys, and she had trouble focusing on one activity at a time.

I didn’t know what to say as my friend and her husband sat next to me and looked at me like I was the only one needing consoling. I also knew that their older child had just been diagnosed with ADHD and Tourette syndrome, but the only thing I said about that subject was simply asking about his well-being and school. I wanted to let them offer me more… or better yet, I was hoping that they would. But no more came with their story.

I know for fact that her brother’s child has autism and now she has a child with ADHD (which I believe is on the spectrum) and now, again, from where I was sitting and observing, their daughter seemed much worse off than their son was at her age. She actually reminded me of Meghan when Meghan was 4, but I sucked that thought down with every gulp of my wine.

The most troubling part of this situation is that my friend (of more than 20 years) does not want to talk to me about her kids’ issues, especially since I know that her daughter has been in early intervention since she was three—but that is all she ever told me—even though I had gently prodded for more. I don’t think that she’s in denial about her children’s problems, but I think that she thinks that they will get better, unlike my situation. Then again, maybe that is a denial. And I have not taken this lack of divulging, or confiding, personally. I certainly know how tough it is dealing with two kids with issues, but, to me, that’s the point that I’m trying to make and to get through to her: The fact that I’ve been through it all, from diagnosis, to where and how to get therapeutic services, to advocating for kids on an IEP within a public school systems, and, if not most important, offer emotional support as someone who knows what she’s going through—as she already knows—and something that she and her husband have always been so willing to offer me.

I just don’t understand. How do you not utilize and appreciate the knowledge and experience of a friend who has been there?

Monday, December 15, 2008

Stone ZooLights, 2008 -- Fun in Massachusetts

Hi Holly, I wanted to pass along this fun and entertaining holiday event for the whole family. Thanks! Jillian Kuzyk

On behalf of Zoo New England Celebrate the Season at Stone Zoo’s “ZooLights 2008”

Share a Magical Winter Wonderland with the Animals of Stone Zoo this Holiday Season

WHAT: A beloved holiday family tradition returns to Stone Zoo when ZooLights opens on Thanksgiving. This winter wonderland attracts thousands of visitors each year who get into the holiday spirit by strolling along tree-lined paths lit by thousands of twinkling lights. Upon entering the Zoo, guests will visit Yukon Creek, which not only features dazzling holiday lights but is also home to bald eagles, porcupines, lynx, a gray fox and a pair of reindeer. Children will want to make sure they visit with Santa, who awaits their arrival in Santa’s Castle. Jolly Old St. Nick will be available for photos through Dec. 23. After visiting with Santa, enter a magical holiday world filled with fairy tale characters and dancing plush animals.

WHEN: NOW – Tuesday, December 30, 2008

TIME: 5:00 p.m. – 9:00 p.m.

TICKETS: Admission is $4 per person on the weekdays (Mon-Thurs) and $5 per on weekends (Fri – Sun). Children under 2 are FREE.

Members, and those who purchase tickets in advance online, receive a discounted rate of $3 (Mon-Thurs) and $4 (Fri-Sun) per person.

Santa photos and carousel rides are available for an additional fee.

WHERE: Stone Zoo 149 Pond Street Stoneham, MA 02180

CONTACT: For additional information, visit

Sunday, December 14, 2008

Shame on me, I just want to have fun?

On another blog there were two people who made comments that I really had to respond to. Now this is not new to me, I mean I respond to a lot of other bloggers and the comments they may receive if I’m so inclined; or when and where I feel that I can offer something valuable or write in defense. So when I read the comments (opinions) of two people, well I kinda laughed and then I kinda said to myself: well WTF. Let me just say that I am not picking on anyone, I’m wonderfully open-minded and I love when people offer their own opinions—it’s what blogging is all about, isn’t it? And good for people who have something to say and want to share their personal view and opinions. So with that, I wanted to post my response to these two comments.

One comment was to the effect that if a parent can’t parent their kids under their own care (meaning at home and not residential), then shame on them. And another comment was something to the effect that we only choose residential to get our lives back and then go out and have fun, as if we don’t want to face our responsibilities of parenting our kids.


Before I write my response to these WTF comments, I am going to tell you about how I felt today:

I was feeling really low today, part of my sadness is that Meghan has gone back to RESIDENTIAL school for the week and I will miss her spirit and liveliness… my other sad feelings are actually conflicting because I am just terribly relieved that she has gone back and I feel guilty for that.

How’s that for shitty!?

Watching her bus pull out of the driveway with her as the only child passenger was not only sad to watch, it’s dreadfully painful when you realize that she is leaving to live somewhere else simply because I cannot mother her safely and effectively. Meghan’s autism is that real and that raw, and clear to me that people who have to choose this route don’t do it for kicks or because they just want to have a little fun in their life--they do it for survival and to be a good mother.

My response to these comments went something like this: Obviously you don’t have a child who qualifies for a residential program. For some of us it is our only hope for our children and their future. For me, my daughter has and does physically attack me, and on many occasions has bit me and had once stabbed me in the hand with a fork, and has made my other autistic child fearful to be in our home. W/o a “team” of trained and fearless teachers physically prompting her (sometimes pulling), my daughter would not do anything: She would not get up and get dressed, she would not shower, she would not go out into the community w/o having a meltdown or at least threaten one—try that type of mothering w/o help and support. And I do know, because I’ve done it for 13 years. Most of us have tried respite (PCAs) in our homes, but it doesn’t work because there are very few qualified people who are actually available and who actually want the job for very little pay (respite doesn’t pay very much). Residences offer several teachers on hand at all times so that our kids have a chance to learn how to properly manage their behaviors (safely and effectively) as well as offer job coaching and training … and the only hope for a future and a life that a burned-out and powerless mother just can’t possibly compete with.

Yes, to that comment from Anonymous, since your comment was directed at people just like me, I will respond for just me: Life is easier when she is not home with me. It’s actually easy and wonderful. I can actually have a life; I can go to a restaurant w/o worry and enjoy my other child, I can drive in my car and go to the store … a simple, mundane task that everyone in the world takes for granted, but I assure you not something I can easily and safely do with my daughter on my own—ever! And since Meghan’s behaviors are just that challenging (and, thus, qualified for residential placement), there are no babysitters, or day care providers, or even qualified respite providers who want the job of helping me.

This criterion is not unlike that of others who have to choose residential for their children. So, now you tell us, what are parents like me suppose to do? Is it our duty to be held hostage in our homes, ignore the needs of our other children and be physically and emotionally abused?

And yes, Anonymous, being able to go to the store whenever I want to buy a carton of milk w/o searching hours for a babysitter (for a 13 year old) is freaking Disneyland for me. What do you call Disneyland?

Friday, December 12, 2008

Different kids, Same disorder

I just love how Meghan listens to me. Really. It’s really very nice to know that I have complete control over my baby girl—that’s a 13-year-old baby girl, by the way. Yes, I’m being terribly sarcastic. Just drip, drip, dripping with sarcasm. But you have to understand that within the first 10 minutes of coming home for the weekend, she ate just about an entire half gallon of mint chocolate chip ice cream when I strictly told her that she could only have ONE bowl. Then she continued to eat these "multiple" bowls in her bedroom in front of the television watching cartoons, cartoons that she cannot so easily watch at school (or eat multiple bowl of ice cream for that matter). But, I--of course--told her that she had to at least stay in the kitchen if she wanted to have ice cream, but, sadly, my demands simply fell on deaf ears. It’s like I’m talking to a wall half the time.

And all this took place after she walked through the front door this afternoon after being at school for two weeks. She ran into the house and walked right by me… just fllleeewww right by me. No hi, no hug, no wave, but she did turn around to acknowledge me with an--oh, so nice-- big smile, oh, sweeet, even though it was only to give me her coat to hang up for her.


But I really was a bit sick today, so I did not have the energy to blockade the refrigerator, or the kitchen, or the bathroom supplies, or my bedroom and the ripped comforter—sigh, sigh! But then I was thinking while I was relaxing on the couch trying to find the extra strength around a miserable cold, that Meghan should really be listening to me and doing what I say. Ha-ha, did you just hear what I said?? Perhaps I’m just a little feverish, too, but I was really thinking that that is how it works, NO? Not to compare my kids, but my son always listens to me. I asked him to get the mail for me this afternoon, before it got too dark, and he jumped up and ran for the door faster than my cat runs to the sounds of the can opener, even though the neighbor's dog barks at him when he reaches the end of the driveway—and he’s afraid of dogs …Oh, such a nice boy.

But my girl, well she’s different. And I do love that about her. I love how she smiles while simply ignoring me. I love how she’s this fierce fighter in the dark of autism. I love how a psychologist once likened her to the proverbial bully on a school bus who steals homework from little scared kids and laughs hysterically afterwards … I love how her behavior of trying to push her luck--and keep pushing and keep pushing, is the color of her creative soul.

I realized today that it’s a control thing. Well, actually, I’ve always known this fact. But the only problem is that I like control as much as she does … so, we tend to clash that way. That’s what’s going on ...

Is this what you call a love-hate relationship? I don’t know. But I now hear her rummaging through my drawers looking for my chocolate stash …

Oh, just like her mama!!

Thursday, December 11, 2008

Social Intelligence or Lack Of...

HH my son likes to make noise. It’s not just his verbal spew—sudden sounds that he seems to make out of the blue, or questions that he will ask me no matter what I might be doing, watching, or whom I might be talking to. It’s also the ever so annoying tapping, jiggling, body thumping and body jumping. As of late, he has become a 5 foot 7 inch fidgeter. I wanted him to sit down and watch this segment from ABC News on autism and halfway through he turned away and started tapping a fork on the table. STOP IT!! I didn’t raise my voice or ask him to stop right away because I was still listening to the end of the segment and I knew (all too well) that if I interrupted his fidgeting, then I would get a “What…WHAT? It's just a fork …blah, blah, blah” (as if it’s the fork to blame) and no more watching an important segment for me. I’ve come to realize that I’ve trained myself to listen through Nick's noise making. Kinda like the talent of listening through walls …

This is clearly where he is lacking in social skills, common courtesy, and sympathy; and teaching him to understand--on his own--w/o having to be told that I was still listening to the news even though he had decided to tune it out and bounce a fork off the table… and ever so loudly!

Right now as I’m writing this, he has walked by me tapping his hand against his pants … and I’ve never realized how loud that sound could actually be.

It’s the same thing as his uncanny ability to have a certain conversation at the absolute wrong moment. For instance, last night while we had just starting eating dinner (that I had slaaaaved to cook), he asked me why people throw up … Really! And just as my very first forkful of food was finally delivered to my mouth, too. Not a great combo of taste and thought. He then continued with “Can you throw up if you eat or drink too much water?” Again, I don’t like to cut him off when he initiates conversation (to encourage conversation and to avoid "retaliation"), but I really could not allow him to talk about gross things at dinner—and we’ve had this conversation before. And even though I reminded him not to talk about gross things while we eat “Because we lose our appetite,” he replied. “Yes, that’s right,” I said, ever so politely (trying to save dinner), but he still had another quickie question about throwing up in general, and you don’t want to know more about that descriptive part of the conversation, but let just say it was the demise of dinner!! And let me just point out here, that if it were he who was still enjoying his dinner, or better yet, enjoying a ooey, gooey, yummy snack, and I just so happened to bring up a topic about someone drooling (a trigger subject for him), then he would yell at me and say something like: “Why do you want to be gross while I’m enjoying my food? Now I can't eat anymore." And continue to perseverate with ..."Why, why, why do you do that? Why, Mom, why do you want to be gross? Why?........”


Oh, the hypocrisy…. Or better yet, lack of understanding ones feelings? And this has been something that I’ve been working on with him for quite some time, and, apparently, not learning too much.

I believe it has to do with his disorder; however, I do believe that kids on the spectrum do understand feelings, emotions and are able to sympathize… Nick has proven to me that he can and does to a small degree. He just has a great deal of trouble trying to understand why people don’t think the way he thinks, or like what he likes, or know what he knows—a deficit in social intelligence rather than lack of empathy--common issue for people on the spectrum. I’m assuming that this is just another developmental milestone that he has yet to conquer and hopefully he will.

Tuesday, December 9, 2008

Back to Business after the Meghan Business...

A couple of years ago, I started a small business called MyCreativeConcierge (Yes, it’s suppose to be all bunched up like that—it’s creative!!). I’ve was pretty successful for a young, small business—I had about a dozen clients (Yes, I call them clients because it makes me feel more successful!!). Anyway, last January, (wow, almost a year ago) I had to slow it down, or more so, stop advertising and not take on any more clients because Meghan was starting to become very difficult … again. By difficult I mean that she would be selective about going to school, and in turn, school was sometimes selective about having her there, as well. Fun game, huh!! The bottom line was that her classroom wasn’t working for her anymore, and if you have an autistic child, then I think you know what I mean. This problem is not unusual; it has happened before and can happen to anyone. But when you have an autistic child, you have to hunt around for another program or classroom, and the school must help you. Finding an alternative classroom (program) was less of a challenge when Meghan was younger, but the child that I was dealing with--one year ago--was a different child.

We were mid-year in waiting for one of the two residential schools to develop an “opening,” and we knew that it could be as late as July for that one slot. So, I had to live day-by-day for a year wondering what my day would be like, because things could change at a drop of a hat with Meghan and her behavioral issues. In fact, she stopped going to school in early spring—she just would not go, and when she did go--by the grace of God (and an atheist praying) then the chances of her NOT pinching another student, pushing a teacher, or destroying the classroom was very slim, and, ultimately she got expelled.

Legally, she could only be taken out of school (or kicked out) for no more than 60-90 days or so (I forgot exactly how long, but trust that I knew my rights) so that meant that there wasn’t a big rush in finding a replacement, or interim, class for Meghan since we knew that she would be going to residential school in mid summer.

To make a long story short, or shorter… she was out of school for over 2 months, and, therefore, I was not able to do anything during the weekdays. I was a captive in my own home. It was unsafe and reckless for me to take Meghan out to the store or on a car ride to anywhere, because she was so prone to outbursts, even in the car. And if you think that I was “chicken” then read this example: One day I took the kids to their weekly swim class, a private lesson and very stressful because Meghan didn’t always behave (Shocking!!). On the way home from the class, Meghan decided to have a tantrum. Not sure what brought it on (the radio, Nick’s voice, my voice, the road…) but all I knew was that she was in her seat belt in the back seat--one minute, and diving over the front seat to pull my hair and kick the daylights out of me—the very next, and all while I was driving on the highway in the middle of a construction site, meaning that I was driving within narrow barriers and could not pull off the road. So, the only thing I could do was pinch Meghan on the butt as hard as I could to get her to fall on the floor and to stop beating me so that I could drive. Plus, if a police officer saw what was happening, he would, most likely, have given me a ticket or arrested me on the spot for being a bad parent, but he would not have sympathized or understood “autism.” It was just how it was back then; autism was not understood, even by police officers. Trust me, there were so many times that I would be “on the lookout” for a police officer when Meghan refused to stay in her seat. It was just too hard. (Do I sound hostile to police officers????)

So, now that I can "get out" (Yippee, I have a life, a real life!!)... I have decided to revitalize my business. Check it out by clicking on the link below and tell me what you think …


Saturday, December 6, 2008

Good Enough Mother

The British physician D. W. Winnicott coined the term “good enough mother” in
part to help mothers who were overly anxious about their parenting skills.
Rather than worry about trying to be perfect (whatever that meant), he urged
them to relax, trust their intuition and realize that their children needed a
mother who was caring, alert and reliable — in other words, good enough.

The author (a psychiatrist) of this article posted in the New York Times used the preceding coined “good enough mother” as an analogy in hopes for helping doctors become “good enough doctor” as far as adopting a better bedside manner was concerned.

I’ve found it interesting that parents of typical kids--and even doctors--can be “good enough,” at their jobs, but what about parents of autistic or special needs kids?

It is clear that mothers (parents) of autistic or special needs kids have been left out of this benefit, because they are forced to be so much more than “good enough.” We simply cannot just relax and be caring, alert, and reliable. We have to go all out and be superhuman, or Herculean as someone had once said to me, smart, stable, determined, independent, advocates and, well ... fighters.

One must wonder why we are not given more credit--as parents of autistic or special needs kids--and be offered the proper acknowledgement for working harder than our typical-parent counterparts have to work. This “credit” can be in the form of offering more supports such as funding for classes, so that we can learn (instead of fight) about how to raise our kids with disorders, and offer affordable health insurance so that these parents can actually pay for medical and therapeutic services and other necessary supports that they may need. Instead of being left to feel alone, work harder and go broke.

It is refreshing reading the terms applied to the “good enough mom” theory and letting go of the notion that parents have to be perfect since there is no such thing as “perfect,” and actually set “attainable goals” of being simply “good enough” is wonderful advice for any mom—as it takes the edge off of what is known to be the hardest and most stressful job.

But I’m afraid that it simply does not apply to all parents …

Parent of autistic or special needs children are not given a real sense of direction when they first learn about their special needs child and/or a real guide or services to use to set “equally fair" and "attainable" goals; instead, there seems to be no desire to actually help these parents--parents who clearly have a much harder job! It’s a form of discrimination and a failure to acknowledge that there is more than one type of parenting going on—the parenting of “typical kids” and “atypical kids.” So where is the justice? I fear that the most troubling part of this issue is that we are being set up to fail (or at least faced with a horrible sense of it) before we can even try—as we are so willing to do.

And if one wonders why there is so much money being paid out to special schools, residential facilities and the like, then understand that it is obvious that these parents are not given the chance to simply be a good enough mother by being offered the supports that they need.

This is so strange to me because we all realize that there is so much more expected of the parent with special needs kids than there is of the “good enough mother,” yet we are often overlooked, if not clearly avoided.

There is another saying that “Raising kids is the hardest job in the world.” This, to me, is incomplete and just another form of discrimination, because it should continue with “And raising special needs kids is even harder...”

“Raising kids is the hardest job in the world … and raising special needs kids is even harder...”

Getting credit where credit is due…

Friday, December 5, 2008

Morning Routine

How do you know when you are not awake, but dreaming? Oh, there are signs to watch for, trust me. But my brain tricked me--twice. I wake up to the alarm at 6:00. Um, that a.m. in case you were worried. My routine is not hard, it's actually like a vacation from the last routine that I had to endure. My last routine encompassed Meghan and the whole nightmarish 2- hour-morning-routine-of-trying-to-get-her-up, dressed, washed, etc. And pray that she actually still makes her bus on time. And that I would practically be hyperventilating during the last 5 minutes because the bus driver would be threatening me that she would leave if Meghan doesn’t come—NOW!! Oh, ho, hoe, the miserable days!! But now my morning is soooo luxury-good!! How luxury good? A day at the spa--like, luxury good!!

I get up and shake Nick awake; as soon as I know he’s awake I turn on his shower and go back to bed--yup, you heard me right! I go back to my nice-warm-yummy-and-still dark-outside bed. Because I know that Nick will drag himself up and into the shower as soon as he hears the shower running. He’s Just. That. Good! And so damn opposite Meghan it’s hard to comprehend that they're even related.

So I will be sleeping in my bed for about another half hour in a semiconscious state. You know the light sleep, dream-like-state, but your mind-clock knows that you’ll need to get up at 6:40 to drink coffee. Yes, what a grueling thing to have to wake up to do!! After coffee I make Nick his breakfast of cereal—at his request. No, I’m not one of those moms who will make a three-course breakfast for her boy. That would be my grandmother, and I’m not my grandma—besides, no one can compete with grandma! But Nick has trouble eating before school anyway—due to anxiety, but my good motherly task is making sure that he has a few bites, at least.

But this morning I dreamed that I got up and shook Nick and turned on the shower and went back to bed, normal. Except my brain should have focused-in on the shower part just a little bit more, since I did observe that is contained a huge array of the finest shampoos—just all lined up in a row—like at the spa!!

Now how could my brain think that that was normal? I should have cued in on the fact that if the shower doesn’t contain at least half a dozen, semi-filled bottles of (ultra-cheap) Suave shampoo, then it’s not my shower!! And I must be dreaming.

So I woke up, again—really this time. I am sure of it! I got up and shook Nick, walked into his shower and turned on the hot water and voila, next to the finest selection of shampoos were the addition of the finest selection of body and face scrubs. Oh, nice!! And I could really use that, was all that I was thinking. HELLO!! But my brain was too wrapped around the idea that my husband must have purchased these fine luxury items. Haaa! I’m not only still dreaming, but I must also be sickly-hallucinatory!!

So I am sitting here right now drinking luxury coffee with peppermint and whipped cream added--yummy by the way, and I’m thinking of all the things that I could blame for making Nick almost late this morning, besides my pure laziness. I’m thinking that it could be my late afternoon Starbucks coffee that I have the night before. Or perhaps it’s the wine that I have directly after my late afternoon Starbucks coffee? And if it’s not one of those godly drugs, then it’s most definitely the NyQuil that I down just before bed! Yes! It’s definitely the NyQuil!

But, lazy, Noooo!!

Thursday, December 4, 2008

The Special Needs or the A-Word Discussion

My son, Nick, takes everything so literally. It started with his teeth brushing. I have always told him that if he doesn’t brush his teeth that they will rot out of his head—true, true! So issue number 1 is how long should he spend brushing his teeth—literally. He will then come to me and show me his teeth and ask if they’re clean—and since I know that he had been in the bathroom for what seemed like forever just scrubbing away, then I know that they’re clean.

He is like this with almost everything. It’s either a lack of confidence, or his OCD. Or maybe a little bit of both. I’ve been thinking lately that it is probably because he is becoming more aware of himself and of his surroundings at school and the other kids. Which is good, but it also brings up the why am I in a special needs class issue.

I’ve never actually had the full discussion with him about his special needs. As far as he’s concerned, he doesn’t have any real issues. I have NOT told him that he has what is considered “special needs” or that he is suspected of having autism. He wouldn’t believe me if I told him, anyway. Put it this way, if I said to him that we think that he has mild autism, then he would probably follow with: What! You think there’s something wrong with me!? He sees autism as a disorder only like his sister, Meghan, has—a severely impaired person who has trouble understanding and cannot talk. I just didn’t want to put a label on him or have him feel that he was different.

But recently he has asked me about a girl in his special needs class. He asked me why everyone was so nice her. I knew that it was his way of asking me more about her. I told him that she has Down's syndrome. I then told him what that was in terms that he could understand. I also mentioned another boy that he knows who also has Down syndrome. Then I brought up the name of another boy that he knows, he is older and in the high school that Nick will be attending next year. I told him that this boy has a type of autism called Asperger’s. I told him about these kids—all in one breath—because he had asked (in his way) and I felt that it was time. And he was just amazed. I could tell that the wheels were turning and he was starting to see people in another light.

I have now come to believe that he is thinking more readily about why he’s in a special needs class. Again, we do not talk heavily about the subject. I have always said to him that all kids learn differently and some kids just need extra help--and left it at that. So he has always referred to this classroom as the classroom with the special helpers.

Recently I’ve told him that I, too, was sent to a special class. Once for lisping, and that I needed speech therapy, and then a year later—4th grade—I was daydreaming in class so I was pulled out for "needing to learn to concentrate better"—whatever that meant!?

But what was even more impressive to him, was that his cousins: one older and one his age, and both of whom he likes to talk about and looks up to, also go to special classes. I told him they have a disorder called Dyslexia and cannot read well. Again, I described it as someone whose brain works differently.

Well wouldn’t you know that he had the biggest smile on his face, as if he was thinking that everyone needs special help to some degree and at some point in time. Which is true!

I guess we really did need to have this discussion!

What about you? What do you tell your special needs kids about their special needs?
And do you agree with how I handle this issue with my son?

Wednesday, December 3, 2008

Christmas and birthday self-indulging

It’s Christmas and my birthday all month long for me. This is how I see it, anyway—it’s my month. I know you’re probably thinking how disgustingly self-absorbed she really is!! Really!! But that’s the point. And you should try it, too! It comes with the theory that life is just too darn short and since my birthday falls just days before Christmas, and by that time I will be knee-deep in the craziness of the Christmas season that I won’t enjoy it as much as one is supposed to enjoy their birthday. So, I take the entire month instead.

I start on December 1st and it’s a small start like adding a peppermint candy to my coffee in the morning. And if I’ve got whipped cream in the house, then I add that, too. Yum. I also indulge in hot cocoa with peppermint candy and chocolates at night (Dove chocolates—OMG) and engage in some guilt-free television watching while snuggled under my comforter as early as 6:00pm. My son thinks it’s hilarious and he joins in, too. When he was much younger, I actually tried to train him to rub my feet, but that worked for about 5 seconds and then never again—he would run away when I’d ask him—such a smart boy!

The point of this is that I do whatever I want—guilt-free. Like reading a book, going out to lunch with a friend (a wine-drinking lunch, but that’s how it is normally, anyway), order take-out more than I should, or if I’m working (ah, another miserable story) then I don’t stress out about it as much. It’s kinda like a adopting a new attitude just for the month.

Hmm, well actually it sound remarkably similar to what I do all winter long, actually… but at least it’s guilt-free for the month of December!!

My newest thing was engaging in some guilt-free lying. Yes, I lie too. I told my parents that I wanted the iPhone for Christmas since it is now 200.00—they usually buy each of their three kids (I’m the middle kid) a 200.00 present or 200.00 in cash under the tree. So I took these very technically-challenged elderly people to the AT&T store (ah, they’re 67, but I can say whatever I want because, since they are technically-challenged, they don’t read my blog) and I told them a little itty-bitty lie that I actually had to get my present (iPhone) early (like that day, and at that moment) because I would have to convert my current phone to the iPhone all at once in order to purchase the phone—a total, total lie, but I did make it sound technically- complicated—so good for me! And they were fine with it. I mean if its gotta be, its gotta be. And my father was examining the phone as if it were something from outer space.

So I have my present already. I know, spoiled brat!! But it’s my month so who are you to judge!! And I must say, or as our teen kids would say, the iPhone is just so cool—it really is. So I’m playing!!

Now if I could only get a job, then all would be perfect!! As I am writing, I am waiting to hear about my last interview to find out if it’s a yeah or nay or neigh!!

Do you have a job? What’s it like? I forgot! Sigh!!

Tuesday, December 2, 2008

The Junior High School Dance

Remember your junior high and high school dances…

I do and I would like Nick to remember them as well. But he won’t if he keeps this up.

I feel bad because my son doesn’t want to go to his middle school dance this year—again. This is one huge problem that I still have with my 14-year-old son. He has mild autism and can control his sensory overload (e.g. loud music, crowded room)—at least in public—however, going to a function or an event like a school dance with his peers is something that he is NOT willing to do—vehemently.

This is where I could seriously use a circle of friends group for Nick. Or Best Buddies, which is offered in Massachusetts, but our school system—of course—is one of the few that doesn’t offer this program. I will work on it for high school and pray that one day he will want to participate in high school dances and capture these memories of a lifetime.

And what about the prom? Will he not go? I went to two proms (okay, 3), my junior and senior year and somebody else’s prom who worked at the donut shop that I work at (the fry cook and the waitress--and, yes, I was still 17), but I couldn’t imagine not attending one of them. I know people who never went to their prom and even though they don’t admit that they had regretted not going, I think they must? Did you go to your prom?

These are social engagements that some teens with autism are not comfortable attending. Some kids, not all. I know a few kids with asperger’s syndrome who attend their dances—happily. But the flip side of this problem is that girls or kids may not want to hang out or dance with the “quirky” kid, then what? My girlfriend actually spied on her son (who has AS) and watched him (I can see her now, peeking into the gymnasium, creeping behind the punch bowl and scaring kids)—she felt she had to and I envied her because her son is opposite my son in that he wants to do so many things independent of his mom. My son is fearful of these events because he is not comfortable with his typical peers—afraid more like—and I feel like I'm holding him back by not forcing him, but that would be bad, too. So, in the future, I must find a friend for him to go with, then I think he would enjoy it—perhaps. I mean he’s a very handsome boy who appears quiet more than quirky—what girl doesn’t like that?

This video from ABC News On Call brings this issue to mind--social issues,understanding autism and bullying. Scroll down to Nightline Reports and click on Daily Bullying, living with asperger's syndrome.

Sunday, November 30, 2008

Making Her Way Back

Meghan has gone back to school—her residential school. Her bus has come and gone and is now en route to school and to a place and a life that she has come to know almost as well as her life here with us. It wasn’t sad to see her off this time; it was more like our routine. But I think that I‘ve finally realized why it was sad for me before. It was sadder for me when we were visiting Meghan at the house (school) and then leaving her behind at a house that was not home--our home that is warm and nurturing and stuffed with love. I've realized that it’s so much easier sending her off to school from home—our home—like it’s supposed to be. I also realize that it’s only school that she is going off to, a place—like a job—or a college—maybe a little bit of both—where she is learning to live and appreciate a more productive and freer life. A special gift really.

That is what I told her this afternoon when she was getting ready to go back to school and stuffing her backpack with the extra clothes that she had brought home, and a lunch that I had made for her for the road, including a few extra Oreos that she would, most likely, not be seeing the likes of at school. I told her while she was looking up at me from where she was laying across her bed just how lucky she was to attend such a great school and one that she clearly loves. I also told her that it’s a great opportunity for her and that I reminded her that it’s loaded with fun activities like schoolwork (she loves) the treadmill (newfound love) swimming pool (reclaimed love) and girlfriends (sisterly love). And I told her that this school is also very expensive because it has so much more to offer her (a life) and that she is extra, extra lucky to have such an opportunity handed to her—like a gift. Then I smiled at her. How much was she understanding? I just don’t know, because she can’t communicate using words, but I noticed her eyes shifting back and forth as if processing the information. And then she smiled at me and grabbed my belly and patted it until we both giggled (it’s her way).

So she went off to school knowing full well that she would soon return home again.

A good life, really—a very good life.

Don’t talk down to him, please!

Don’t talk down to a person with special needs. Please. It’s not necessary and it’s demeaning to the boy and to his parents. And it makes you look bad, too. Okay!

So don’t do it. Talk to him at his age level, no matter what you think. Don’t talk slower than you normally would; don’t talk about him like he’s not even in the room and can’t understand you anyway, because he can and he does.

It may take some training and education on your part to not do it, to not talk to him like he’s less, because he’s not, he’s so much more.

Just because you hear words like autism, or special needs, or mental retardation doesn’t mean that he doesn’t understand you and it doesn’t mean that he doesn’t have a thought of his own… because he does. And he knows your game.

So don’t talk down to him, don’t overlook him, don’t treat him differently, don’t assume that he can’t do something, because he can; don’t assume because he’s quiet that he’s not thinking, because he is. So don’t do it; know better because I’m telling you to. Okay!

Just help him if he needs help or asks for it, but nothing more and nothing less; treat him like the 14-year-old boy that he is.


Saturday, November 29, 2008

The beauty of communication even without a voice.

When Meghan was five years old I had to host an after the wedding party for at least 50 people. My brother-in-law was getting married and my husband wanted to give them a good party. Now I must tell you that I really like weddings. I like the fact that I am witnessing one of the most joyful events in someone’s life and an event that families (especially the bride) had put so much effort in the planning of (sometimes up to 2 years) and without missing a beat as far as making sure that their guests also enjoy in the celebration. Now let’s review the word "celebration" for just a moment, shall we! I am no stranger to a couple of glasses of wine (or better yet, champagne) coupled with good music and a dance floor. In fun company and some good music, I’m usually the first one out onto the dance floor—hey, I like fun, music and dancing, what can I say. Even at my last high school reunion that I’d attended (my 15th, 8 years ago) I was very much the only one requesting music from the DJ and even led the, uh-hum, conga line… Oh, fun times! Hey, you can dress me up…

I think because I was so stressed out with my kids, especially the work involved with Meghan, I really knew that I wanted to let loose and have fun at this wedding—so much that I think I single-handedly scared the bride's side of the family, but what the hay! I remember just moments before that I had decided to dance—no one was dancing—and there was so much tension among the family at my table, fighting, jealous bickering, that I stood up and grabbed the first person that I saw and led them onto the dance floor and the rest of the night was dancing history and no bickering!

By the time the party moved to my house, even the brides side of the family came along (still with that same scared look on their faces) and just watched us eat, drink, dance and sing karaoke (welcome to the family!). Meghan, who was being watched by a good friend was delivered back to us and thrown into the throng of craziness. I had decided that my moments of dancing, drinking, and karaoke singer had come to an end and it was time to play good hostess and good mom, especially since I had a difficult and very energetic autistic 5 year old who did not do well with loud noise and uncontrollable turmoil (a typical autistic trait).

Well clever Meghan didn’t miss a beat because while I thought she would have trouble in the fog of the herd and as the karaoke singers were growing louder and louder, she had decided that she would take matters into her own hands. She grabbed me in the mist of the shuffle and dragged me by the hand and led me into the living room where the singers we grouped together belting out the tunes and dancing up a storm (two attorneys and one business executive were among the loudest of the bunch—and the bride's family had become the unappreciative audience—and even more scared). Meghan led me to the center of the commotion and made me stay, as if saying: sing and dance mom, dance.

So I did and Meghan smiled.

There are moments like these when raising a child with autism. Like witnessing a dementia patient in her moments of clarity. You hold on tight and enjoy them when they come.

Black Friday--Bittersweet

Black Friday was bittersweet. It was dark and rainy, then it shifted to warm and sunny and I saved almost 400 bucks on a 42" new plasma—yummy and Merry Christmas!

At the same time, my eyes were glued to CNN and thoughts go out to the victims in India.

Then my son said and I quote: "It's an unstable world." Not sure where he picked that up from or from whom. But I then had to define what an unstable world was... A bit too young (14) to be quoting such adult words. I don't think that I picked up "life is unfair" until I was 20.

Anyway, anyone got good shopping ideas for a 14 year old boy and a 13 year old girl. what's on your kids' list this year? Need ideas, please!!! Nick is too nice of a boy and he won't (I repeat: will not) make a shopping list for me.

Wednesday, November 26, 2008

A Thanksgiving Story

I am looking forward to this Thanksgiving not only because Meghan is home and there will be that perfect balance at the dinner table, but, also because I love that familiar nostalgic Thanksgiving smell of the kitchen and sounds of the house that seems to shout: we are indeed home, safe and happy for the holidays as we welcome all of our family and friends. And let me just say that I will be enjoying this year so much more than last year because last year was so overwhelmingly insane and almost comical that I almost, for sure, deemed my family most dysfunctional! Hence, the need to seek a therapist was finally upon me.

I love Thanksgiving and I have it at my house because I like the whole festivity of preparing a turkey and making a fun-themed celebration out of the holiday. Last year we were prepared to have 16 people—and in my opinion—the more, the merrier, I actually invited 21. As I was stuffing my 23+ pound bird with my homemade stuffing (love this recipe using sourdough bread, cranberries, carrots, celery, and walnuts—yum) and still wearing my nightclothes that revealed a bit too much breast and a little too little skirt, my doorbell rang and my first guests oh-so-merrily bounced through the front door shouting “Happy Thanksgiving”—um, 4 hours early.

So what’s it like not being showered, virtually naked, entertaining a profoundly autistic child, while frantically stuffing a 23-pound bird trying to get it in the oven on time and have your first guests arrive and looking to be entertained?

Well I think you can imagine!!

The morning got even better because my daughter didn’t understand that just 30 minutes cooking in the oven wasn’t going to do it as far as “being all done” goes. She loves turkey and kept trying to get into the oven for just a little taste—No, Winnie-the-Pooh, NO! So I was standing in my kitchen sucking down some wine with our first two guests (um, 11:00 am) and trying not to seem hostile while chopping up the vegetables and holding my breasts in (and up) while struggling to keep the oven door firmly shut with my left foot while my left leg was working tough against the stronger and most determined Meghan. And all the while I was trying to make it all appear—simply normal. Cheers!

Next on the nightmare—I mean—list, was finally grabbing a shower and changing into clothes that were actually appropriate for the general public to see me in. I left my husband firm instructions to watch Meghan and the oven door. And then when I had just started to enjoy my hot, steamy and rewarding shower—just letting go and relaxing in the massaging jet of the spray, Meghan, most abruptly, opens the shower curtain while holding up a large fork and a carving knife and trying to drag me out of the shower as if saying: time for turkey. Let's just say that Janet Leigh has nothing over me in the movie Psycho—cue Psycho music theme. Needless-to-say, it took me a couple of weeks to get over that one—I mean the Meghan version.

And if that wasn’t "entertaining" enough, then this takes the cake: my early guests were family from out of state and were planning on staying the night, of course, and one of the guests (an adult) has OCD and needed to “make himself” more comfortable in my home. And, as any good host, I wholeheartedly agreed. No! He didn’t get naked. It was worse! He rearranged my family room. Yup, just moving around chairs and couches and rearranging the blinds. Really! I would not lie. It was a changed room in the end and I was not any happier than Meghan was—an autistic child with OCD herself—and since I could not make her understand why it looked the way it looked, I had to quickly change it back.

The comedy of it all was by the time dinner was actually served—thank you very much—half my guests were already half in the bag, and the family room was still making the bloody-hell switches. Ugh!!

This year we will have fewer people and no overnight guests!! But I still got the same size bird—just in case.

What can I say, perhaps I was an abused child! ;)

"A Happier and Functional Thanksgiving to You and Yours!! ;) "

Tuesday, November 25, 2008

Music to my Ears

Nick is improving before my very eyes—or ears, rather. A couple of years ago he would be a nervous wreck going off to school, and he had the need to ask the same questions over and over to both me and to his teacher—he would perseverate. He was in 5th grade when it all came collapsing in. He was found sitting under his desk, yes, under. The teacher called me in for an emergency meeting to tell me what had happened, and I had requested Dr. C to join us. Our school system was very fortunate to have a PhD of Psychology (Dr. C), who specialized in autism, working for our school district—a blessing because he helped me with both my kids and was very talented in working with autistic kids and their behaviors, and I trusted his instincts. He told me that he was certain that Nick needed medication for his anxiety. I, at that time, was still very much against medications if other therapies could work, but in this case, he clearly needed the help.

Upon finding Nick a good psychiatrist and a good therapist (two different people), his psychiatrist is someone who is only following his medication (and someone who I and the other therapist suspect of having Asperger’s Syndrome, himself—interesting!).

The aforementioned therapist is a woman who has specialized in helping children and adults with autism spectrum disorders and has been in her field for many years.

It was advised by both of these professionals that Nick should go on medication to help him with his anxiety and perseveration proclivity. We put him on Fluvoxamine (or Luvox), suggested by the psychiatrist and the therapist agreed that it was a drug known to work well for kids on the spectrum.

As I once mentioned, in a previous post (s), that it had worked remarkably well for him, he even asked me: “Why does this make me feel better, I don’t want to feel better because now I have to got back to gym.” (Note: he didn't have to attend gym while we were searching for the therapists and meds because it made him more anxious.) Interesting psychology here, though—and smart boy. No, my kids are not sport enthusiasts beyond swimming and trampoline jumping.

I blame myself because I, too, hated gym growing up. I mean who the heck invented dodgeball? Or the sports-enthusiasts mentality that sports matter more than friendship does and if you don’t catch the high flying ball while standing in center field, then You Suck!

So before meds, Nick would tell me that he hated gym at least three times while just walking to his bus (van) in the morning, and, now, he’ll tell me maybe once that he hates gym or school if he happens to think about it—this morning and yesterday morning he didn’t say either one. Hmm, I knew something was different!!

His conversational skills have also improved, significantly. He used to go on and on about a certain topic until I would tell him that he needed to talk about something else—anything else. I mean he would just say the same thing over and over again (perseverate) and not let-up. I remember how I would just want to scream, but I wouldn’t; instead, I would try to tell him that it was time to talk about something else as calmly as possible w/o making him feel more self-conscious than he was. It was funny because, before the meds, the therapist told me that I was being henpecked all day long. I laughed. Not just a regular laugh, but more like a hysterical-like laugh because she was right! Ah, people who understand and truly get it!! Love therapy, just LOVE IT!!

But, today, he hardly ever goes on and on about a topic or asks me the same questions over and over—at least not at the same time.

So is it the drugs?—even though he is only on 50 mg per day, a very low dose, and has grown at least 5 inches and has gained at least 20 pounds since he started the meds. Or is it the school that he attends? Or is it just the fact that he is growing up? Time will tell in a year: after he starts high school and after we take him completely off the meds to see for ourselves.

So stay tuned …

Monday, November 24, 2008

"Enjoy the ride while you’re still on it"

My mother said this to me a very long time ago. Not the exact quote, but something similar like “Don’t wish your life away,” but at the time I scoffed at her remark. It came in response to a remark that I had made to her: “I can’t believe how hard these kids are, I’m going to tell my kids not to have kids when they grow up because I love them.”

She was shocked at what I had said. “Do you hear yourself?” She said to me like a mother scolding her small child, but little did she or the rest of us know that my kids were yet to be diagnosed with autism. So, there was just cause for what I was thinking and going through, and realized later that not all kids were like my kids.

But at the time my mother made me feel like a woman who shouldn't have kids if this was my attitude—like how selfish I was and then I felt even more miserable about my situation. I was so overwhelmed by my kids (pre-diagnosis) that I actually remember thinking that I was amazed at how many people even had kids and then kept having them. Was I missing something? I even remember my cousin telling me before I had kids, that having a child was the best thing that she’d ever done.

I felt manipulated standing in the kitchen with my 1 and 2 year old and thinking that this was a scam. People say this to you (like your own mother) just to get you to have kids so that they can have grandchildren. This was a true fact, by the way. My mother was after me practically since my wedding day (at 25) to have my first child. I told her “What was the rush, I just got married.” She, by the way, got pregnant on her honeymoon. Um, no thanks! I said to her that I needed more stability: like making more money and buying a house before I had kids. She was not happy. Then she finally admitted to me that all her friends were grandparents and that she was feeling left out. Ha, case in point.

As time went on: receiving the tough autism diagnoses; busy learning, training, therapies and advocacy—every thing from a–z associated with raising kids with a disability, I was certain that I was not going to be happy until my kids were actually all grown up and I could see for myself how they would turn out and what they would become—like some kind of project. I think I even wrote a poem about that. It was about how I would not be able to truly rest and have real peace until my kids were all grown up and living the life they were destined to live—with my help. To have the hard stuff done already and the daily struggles and the pain would be over. I was impatient for results and felt that no one on this planet could actual understand my reasoning. I was essentially doing what my mother warned me not to do, as if she was telling me some worldly secret—I suppose it was.

Live for today, not in the past or in the future is the key to happiness and the healthiest approach to life, is what a therapist had said; to appreciate life now and today and not look back at yesterday or look to soon for tomorrow. Wise advice, but when you’re in the thick of a tougher life than you bargained for, you tend to think that these rules simply do not apply to you, hence, I was too busy trying to fix my kids so I could negotiate as normal of a life as possible for them, that I was forgetting to enjoy them in the process.

At some point I learned to put down the books, the questions, the theories and the blame, and started to enjoy the ride, but it took some time to figure out.

This is one of the biggest reasons why I chose a residential school for Meghan (who is more than I can handle), so that I could enjoy this ride with Nick before it was too late.

Saturday, November 22, 2008

A Good Mother

I am trying not to feel stressed. Or more accurately, I’m trying hard not to feel stress with Meghan here, but I realize it’s almost impossible. You can call it post-traumatic stress disorder, I don’t know for sure, but a good therapist would say so. It’s just that I had to live an entire year with Meghan prone to outbursts and coming after me to hurt me. I was abused and had to "take it" for the love of my daughter.

We have her for an entire week and she still thinks that she can do whatever she wants regardless of what I say. I get to sit here and guard the kitchen from keeping her from overeating. I get to sit here and guard the kitchen and bathrooms from keeping her from using too much hand soap and flooding the sinks. I get to sit here and listen to her enjoying some TV time and wonder if the excitable sounds are really sounds of frustration and that she is just seconds away from tearing apart a room or, worse, come storming down the hall to find and attack me. I get to sit here and remind myself to say to her "Use good hands" (code word) to calm her when she does have a behavioral episode, because, inevitably, she will.

I am trying hard not to feel that all too familiar stress, but I can’t help it, no matter what I say to myself or try to think. It starts from my shoulders and then to my neck and now I’m a tight ball of tension, tension that is obviously named Meghan.

I feel bad that this is how I feel and that we don’t have a "normal” life and household when she’s around. I feel even worse admitting this to myself and everyone else for that matter. Admitting that the best thing that I’ve ever done, next to trying my best to be a good mother, was sending Meghan to a residential school.

But I can write about it in this blog and release it to the general public for you to read so that I am not too harshly judged for having to send my 13 year-old daughter to a residential school for the severely autistic. Sometimes I really feel that I have to defend myself for not being strong enough to handle things on my own. For having the courage to send her off to a residential school, but not having the courage to have her home-schooled and hire a “guard” to stand by to help me fend her off when she becomes behavioral two times a day. For feeling judged for being selfish for not loving her enough to give up my life and live solely for her, even though it is best for her future and for the future of my other child.

It’s interesting how I need to write this to validate my decision and my parenting, isn’t it?

I was telling a friend on another blog that a good therapist once said to my sister (my sister has severe OCD and anxiety) that there really isn’t a fancy definition for being a good mother: just one who tries no matter how she feels about herself or what she thinks.

Friday, November 21, 2008

Star Reward System for Autistic Kids

Meghan will be coming home today for an entire week stay. As I am running around the house cleaning and doing errands to welcome her home, I’m thinking how happy I am to have her home for her first full week in 4 months, but I am also worried, too. I’m worried that she will get too used to being home for the week that it will be much harder for her to get back on routine. Meghan is profoundly autistic and it is usually very difficult and time consuming to motivate her in doing almost anything: getting her up and dressed; taking a shower; going out on a car trip; eating at a restaurant. I was visiting one of my favorite blogs, Teen Autism, and her most recent post was about "how to motivate autistic kids." Fitting, right? It reminded me that in addition to her visual communication book (or pecs), of which she has one for home and a few for school, we also have instituted a star reward system. Even though we pleasantly set-up her face-board of activities for the day that she must follow using these pictures (simple use of velcro on the face of a three ring binder), she usually takes the pictures off and replaces them with pictures of things that she'd rather do. Hence, our difficulties in motivating Meghan.

Even though this is her little game of obtaining power and being very stubborn, it could still take up to an hour just to get her to fulfill the first activity on the board, like taking a shower. School has developed this star reward program to use to “motivate” her to, not only, to take a shower, but to get to it within a reasonable amount of time.

How it works:

There is a velcro section on the face of her communication notebook for little pictures of stars. (just like for her other communication pictures). Every time we need her to do something, like taking a shower within a certain period of time, then she will get a star velcroed to the face of her communication book. After she earns a certain amount of stars (we have her earning 5), then she will get a reward, like TV time, because she loves to watch TV or a video. It is recommended that you start off with only a few stars—like three, so that the child will see rewards more quickly to understand how the system works.

This is working for us so far, but it is not a guarantee for a long period of time--at least it wasn’t for us. We had actually tried this reward system once before, but after a period of time, it stopped working for her. Meaning that she was no longer motivated to earn her rewards and was content to just sit in her room all day without rewards. But this is just the personality and nature of my daughter, the most stubborn one in our house. But clever too!

So we are trying it again and if it stops working, then we try something else.

My other son, Nick, doesn’t even need a reward system. He does everything I ask him to do: Takes a shower when told, will get dressed when asked, takes out the trash, gets the mail out of the mailbox, cleans his room. He is just a boy who likes to do what he is asked to do to please us. I actually think he likes being told what to do, even though he plays up the whole “doing work” thing with a loud groan, but then does it with a smile on his face. Funny, huh?

You know what psychologists say, most kids like to be put to work as it makes them feel useful contributing to the household … I must say, even Meghan will help with cooking and emptying the dishwasher on occasion w/o even being asked.

Thursday, November 20, 2008

When you actually have to sing your name

I was at the supermarket doing some shopping and ordering my Thanksgiving turkey as I do every year for anywhere between 7-16 people. I told the butcher the usual mandatory facts--my size and my name. Um, the turkey size that is. He got the size down but the name, well that was just another song and dance…

I know for fact that my name (that I have lived with my entire life) is more of an unusual name and that people either have never heard of it before—believe it or not—or mistake it for the other two sister-like names: Polly or Molly.

Like this turkey-man who started with a P (for Polly) and I said very politely, but not surprisingly, “No, it’s Holly with an H.” This correcting someone is not new to me, in fact, I have been living with this problem and trauma all my life—trauma? Yeah, really! For instance, whenever a new teacher would be welcomed to my childhood classroom and asked for my name, I would almost be in panic attack mode because I was a very shy girl and I knew that when I told my name to the class that the teacher would, inevitably, say, “What’s your name? Polly?” “No, it’s Holly,” I would say and she would say “What, Molly?” And everyone would laugh and I would be embarrassed. And I would end up being the one who looked stupid—never the other way around. In fact, one of my favorite field trips as a kid was to a newspaper headquarters and it was there that I first discovered that I wanted to work for a newspaper or as a writer when I grew up. I was so excited when this news guy gave us all a newspaper-like page with our names printed on them as a headline—neat! But when I got mine it read Polly Nappi and not Holly. So, not the same, and I was very sad and embarrassed because all my friends wanted to see my paper. I hated my name. And I wondered why I couldn’t have been a Jennifer—everyone knew that name and it wasn’t unusual; in fact, there were probably 50 "Jen's" in my high school alone, next to 30 "Susan's," and 20 "Lisa's," but, of course, no other Holly—I felt like a freak. Still as an adult, I’ve probably only met 2 other Holly.

I know that you’re probably thinking that this is a good thing and makes my name special … and, as an adult, I have come to appreciate that I’m one of a few Holly's, at least in this country.

Anyway, back to the turkey man who wanted me to be Polly. He started again with a P then added an h after and he was waiting for me to help him with the rest—he was clearly confused. I said “H for Holly” once again and he was just stumped and hovered his hand over the "Ph" that he had spelled out. So I had to go to extremes. Standing somewhere between the pork loin and the chicken breasts with this butcher-man draped in blood stained white, I began to sing him a song. Yes, that’s right! I said to him, you know, like the song: have a holly, jolly Christmas; it’s the best time of the year … while swaying my head from side to side appreciating the early Christmas number, and if he made me continue, then I was just going to give up and live with the “Pholly” name and move on. But, to my good fortune and to his chagrin, he finally got that Holly had nothing to do with Polly and, to this moment, I’m still not sure if the song helped, because when he fixed my name it read that I’m Holley. Another common problem to overcome…

And let's not even review the Nappi name (all you people from England, don’t even go there!!)

Note: Holly, The name is derived from the Old English holegn (to prick).

and poisonous too!!

A little fun: What does your name say about you?

Wednesday, November 19, 2008

ABC On Call Videos: Frequently Asked Questions

If you are a parent of an autistic child, or two, or three, then I am certain that you are frequently asked common questions about autism by people who are still not that familiar with the disorder. One of the most common questions that I still get asked is “Wow, you have two children with autism, is that unusual?

Even though there are many more kids/people being diagnosed with autism than in previous years, a lot of people still know very little about the disorder—including some family members.

At big get-togethers like Thanksgiving, Christmas, birthdays, etc., I still tend to be cross-examined about autism by a relative or a close family friend. I don’t mind talking about autism and helping people understand the disorder, however, it does become a little annoying after a while. I mean , there are other things that I like to talk about, too.

That is why I like this new segment that ABC News has developed. It’s ABC On Call Autism—I’ve mentioned it before. I think it’s ideal for these aunts, uncles, grandparents, friends, or parents who have a child newly diagnosed, to learn and understand about autism.

Click here for the link to a series of “quickie” videos on some of the most common questions asked about autism.

Let me know if you like/don't like On Call Autism. I like the fact they are quick, accurate, and easy to listen and learn videos, w/o overwhelming the listener with too much information.