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.

Tuesday, November 18, 2008

If I'm going to lose a toe, it's going to be done the old-fashioned way

There was a discussion on another blog about women over 40 not being as happy as their over 40 male counterparts. Some women (and most men) believe in cosmetic or plastic surgery to make them (women) look better and, therefore, feel better about themselves.

However, this interesting story came out and I think it is taking cosmetic surgery to a whole new extreme. No only are modern day women wanting boob job (bigger), Botox injections (younger), cosmetic surgery (prettier), but they are actually having their pinky toe removed so that she can feel sexier fitting (I mean squeezing) more comfortably in the narrow foot of the stiletto heel.

"The fifth toe is an important part of your foot structure and removing it could
affect your gait and balance," says Caroline Reid from chiropodists Happy Soles.
"But I have heard of it happening in America so women can squeeze into
tight-fitting heels."

Women aged 18 to 73 were questioned about their favourite shoes for a study, published by the British Journal of Podiatry. One in three said they liked wearing heels regularly. One in five said they wore them to look good at work or because their partner liked them, even though they hurt.

Can you imagine?

Now I’m not opposed to women getting Botox injections to fill in deep lines and wrinkles to stay younger looking a little bit longer, but going through pain and discomfort and removing a toe for shoes is just too much for me …

Read the entire article here

Who's Watching Gossip Girl

How old is too old or how young is too young to watch Gossip Girl? I can’t seem to figure it out. This new evening hit soap opera is red-hot and played by characters who are still in High School. Move over Beverly Hills 90210, because Gossip Girl is not only about the ultra rich high school Manhattan socialites living the good life in the upper east side, but kids who are clearly keeping up with the life of mature, sophisticated and manipulating adults.

Sitting in front of the television with my hot cocoa in hand, I wondered if I should be embarrassed by watching the show. It is about high school kids, none-the-less, and I didn’t even watch 90210 when I was in my 30s because it seemed much too young for me. Now that I’m in my, um-hum, 40s, I am finding it super hot to watch kids half my age living a life that I’m still not living yet. Let’s face it, they clearly attend more parties and social engagements than I do; and they get to and from these ultra-fancy social engagements via a limo in which they most certainly finish off their evening, or early morning, having sex within its sleek back seats with whomever guy they’ve ended up with that evening. Hey, when’s the last time you’ve had sex in the back of a swanky limo? Or better yet, when’s the last time you’ve had sex?

Lies and manipulation is another game these young Gossip Girls like to play. I don’t have that interesting of a life to actually manipulate or, better yet, blackmail someone who had dissed me. Take for example Blair who wanted to do-in her ex best friend. Well, clearly, five seconds spent at their local hot happening bar and this gossip girl has got a phone-photo of her ex BFF’s mom kissing a man that is clearly not her ex BFF’s dad. Oh, I’ve gotcha now, Gossip Girl!

The only thing I will catch at my local hang out bar is a bad cold or a man three times my age trying to pick me up. But Gossip Girl, Serena, likes to drink her martinis and do her men right there at the bar especially after doing a sexy dance number on the actual bar. If you can’t imagine doing that at your local hot happening place at the ripe old age of 17, then can you image sucking down martinis at 17? I couldn’t even handle a beer, which I could only get with my fake I.D. How’s gossip girl doing it?

Oh, the life of the Manhattan social scene where money can buy you anything, including a man, or a much younger man if you happened to be my age, that is. Or even afford you a super smart student to take your SAT for you because you forgot to actually get up after your one too many diet colas with an ex BFF who clearly wanted to finish you off with a little addition of a liquid drug added to said cola to ensure a good night’s rest. Oh, you nasty Gossip Girl. But don’t worry, because one phone call to your new super-rich and powerful stepbrother and he’ll take care of it, not prob. I guess you’ve dodged another bullet there, Gossip Girl!

Oh, a day in the life of NYC’s twenty-first century teens. Is it really this vogue? Or does the show just want you to watch the steamy, super-hot soap opera with your entire family, including your impressionable teenage kids? Yeah, my 14 year-old walked by my room and asked me if I was watching Gossip Girl. Oh, my!

In this article, it seems that teenage kids watching shows like this are finding themselves getting pregnant ... so a close eye and a little chit-chat with your teen about shows that seem to be geared toward teenagers (I thought it was) but really not? Yikes!

Read more here about sexy TV influence on kids.

Monday, November 17, 2008

When you think that someone is autistic…

Ever since my children were diagnosed with autism--both at a very young age--I did what all good parents would do and read everything that I could get my hands on about autism. Actually, I studied autism, aspergers, PDD and MR; I knew that I needed to become an “expert” in the field so that I could, not only, advocate for my kids, but also understand how their brain worked and how I could help them better.

One day, many years ago, we went to visit family for Thanksgiving in another state—like an in-law family reunion (holy hell, but I survived). It was also about a year or so after my kids were diagnosed and I was still reading whatever new book there was about autism. On the drive back and while we were approaching the NJ turnpike’s tollbooth (I remember that exact location—freaky) it just hit me like a ton of bricks--really. I turned to my husband and said “I think (so and so) has Asperger’s syndrome.” I was so sure of it.

His eyes blew open (he, too, was reading and learning about autism) and he agreed.

The most interesting part of this discovery was that this boy in question was 4 years older than my oldest child and quirky was only one way to describe him. In the previous years, and before I knew about autism, we had probably seen him a half dozen times or so, so we knew that he had some obsessions and quirky-like behavior, but we all thought nothing more about it. He was very intelligent and just seemed to know things so we could just so easy overlook everything else.

Conversely, my kids were so easily singled out by these family members because they “weren’t” keeping up intellectually. It’s interesting how this is the only marker people use for signs of problems.

So now comes in the in-law who is studying disorders—um, that would be me.

What does one do with information like this? Really? I told my husband to tell his sisters and see what they thought. The unfortunate part to this path to discovery was that I did not find it my place to tell my husband’s family what I had thought about a member of their own; even if it was just my caring and “educated” opinion that he should be evaluated by doctors.

The real sticky problem here is that this boy’s parents would never, ever, entertain the fact that their son has a disorder. They were perfectionists. Type A personality over achievers who “clearly” would either ignore my thoughts or deem them as ridiculous and insulting; be shunned from the family and their house; or be accused of needing to put “blame” on their side of the family for having autistic children of my own—and deeming me the angry mom.

To understand this better was to know that the very first words out of my mother-in-law’s mouth when Meghan was first diagnosed were “Well there isn’t anyone with autism in our side of the family AND WE HAVE SUCH BIG FAMILIES,” so with a raised eyebrow and a smirk--she blamed me. Oh, I could just feel the warmth, love and support permeating!!

So I left it up to my husband to say whatever he wanted to say and left it at that.

To this day not one word was spoken about this boy possibly having a disorder, at least not to me. But one day when I saw this boy’s mom a few years ago, she told me that she believed that he has some kind of “disorder”—she put it in her own safe and quick way. And I said with a definitive bounce in my words “Like Aperger's syndrome” and left it at that.

Not another word was spoken, but I think we were both relieved that we had the conversation and I think she was relieved that I hinted on it even if it never went any further.

Saturday, November 15, 2008

No Respect for the Mother Water

In my house we have water pouring all day. We even bought a fridge that has an opening to expel water and ice at our convenience. We call it the world’s best invention, next to the coffee maker—at least I do. Growing up my parents would not allow us to drink water directly from the faucet and, at the time, there wasn’t the craze for purchasing little bottles of water; so, on Saturday’s my father would take us to the springs (at Wompatuck State Park) in Hingham, MA and stand in line with glass bottles in hand to fill up for our weekly supply. In fact, my father was so health conscience (and still is) that we would have to use the spring water to make tea or coffee as well.

To this day, as one might imagine, I cannot use anything but bottled water or filtered water, hence the purchase of my handy dandy fridge's water filter system. And before we purchased this fridge, we were drinking bottled water like every other normal person, but when you have an autistic child with a case of OCD and has the need to take a sip of her bottled water and pour the rest down the drain no matter what I did to try and stop her—she just couldn't seem to help herself, but it was the equivalent of pouring cold hard cash down the drain.

Instead, we welcomed the arrival of our new refrigerator, ahhh, and she purrs, I mean pours so nicely.

I've noticed, though, through the last few years, especially in recent years, that whenever I fill up my glass of the crispy clean cold filtered stuff, including filtered ice cubes, oh, did I mention it makes all different size ice: whole, cut, crushed … oh, my. I’ve noticed that my glass doesn’t stay filled for very long. Meaning that either it is "evaporating" directly from my glass or someone in my household thinks that whenever they see a glass of ice water that it’s theirs for the taking, or sipping--in this case.

So I've discovered that it is my kids who are the culprits and, lately, it has turned into a fun little game of where's mom's glass, gotta have some water. Now I haven’t said much until recently because I just can’t take food or, in this case, water out of the mouths of my kids. A mom just can’t do that, but a dad—not problem. Yeah, I’ve seen that too. Dad’s water is sacred but is now stealing from the mom supply. So, yes, it’s getting out of hand.

In the past I’ve tried putting lemon wedges in my glass to “let them all know” that this glass of water does, in fact, have an owner, and a caring owner she must be to add a hint of vitamin c-packed fruit to her water supply; but, alas, this too has not worked. As I would occasionally hear from listening to the sounds of the house—mothers do this regularly—my son say “Oh, what’s this a lemon” and I would return to the room where I left my glass and it would be empty and a lemon wedge would be most humorously stuck between my son’s teeth—cute kid.

Meghan, on the other hand, wouldn’t be so kind; she would see the lemon floating in the glass as an "obstruction of justice" and I would be thinking that this could, in fact, deter her from actually drinking my water—Oh, high hopes. What I mean is that I know my girl and she would never have any part of a nutritious piece of fruit--especially one added to her hourly water supply. And since she has OCD, this could be a very good sign—for me. So I remember smiling and watching her and thinking that she just might walk away--this time. I would be saying to myself with one discerning eye on my baby girl: Yeah, that’s right, put down the glass and back away and nobody gets hurt!!”

But it didn’t work because this clever girl simply shoved her not-so-aseptic hand right into my glass and removed the offending piece of fruit with a grimace and flung it across the room—the fruit that is. Nice.

As of late, I literally got to see it to believe it. My son grabbed my glass while I was standing in front of it and all the while I was making him his favorite breakfast of pancakes. So with a spatula in hand, I watched him just sucking down my freshly made ice cold water and said to him,

Me: hmm, is that your water?
Him: silence because still chugging
Me: waiting, watching, pancake-flipping
Him: placed the glass back down on the counter while letting out a most content sigh, and with his back turned: “Oh, I didn’t know.”

So NOW I’ve got it! My kids must really love this fridge far more than I do because apparently water just pours itself right into a glass and on occasion even shoots out a wedge of lemon—how about that! Bet you don’t have one of these!! ;)

Friday, November 14, 2008

Hit Hot Sitcoms with Autistic Characters--fair?

Did anyone watch Grey’s Anatomy last night? Wow. What an ending. And I’m not talking about the juicy passionate kiss between Doctor Yang and Dr. J.I. Joe (doesn’t he look like J.I. Joe?) I’m talking about the newest doctor who apparently replaced the lesbian blond and pushed aside the whole lesbian thing. (Controversial?)

It was revealed at the end of the show that this doctor, played by Mary McDonnell, whose character, let’s just say, has a bit of quirkiness to her personality, but it was nothing compared to her very visible and successful reputation of being a good surgeon, has Asperger’s syndrome (AS).

If you saw the show yourself then what did you think? Personally, I thought she overplayed the part. I know a couple of adults who have AS and they are not as “extreme” as this actor played.

It also brings to mind the other ultra hot and popular show, Boston Legal, where a male actor plays a lawyer who also has AS. What do you think about his characterization?

I know that no one likes to characterize autism as “mild and extreme” to the point that I don’t even know what to say and how to express myself in posts, but since both my kids are on opposites sides of the spectrum—my daughter being “full blown” extreme autistic and my son is on the much milder, asperger’s end, then, personally, I don’t see a problem using this as a descriptive of the disorder. I mean, not all autism is the same so how do you differentiate? I know that’s the point, that you are not supposed to, but I think that the skills on either end of the spectrum are so different and the needs of these kids and adults are different too. I want the world to know that autism is not just one type of person, skills, personality traits, and that there are extremes of this disorder as there are in any individual's personality and ability. I suppose there is this fine line in stereotyping the disorder.

So with that, I believe that both these actors, Grey’s and Boston Legal are playing AS on the “more extreme” end of the disorder. What do you think? Do you think that these actors played Asperger’s syndrome with enough accuracy to help the world understand the disorder just a little bit better? Or do you think that it was an unfair and unjust characterization of the disorder?

Personally, I’m glad that these popular sitcoms are bringing autism out of the shadows and into the real world of successful doctors and lawyers--and to get used to it.

And just a little tongue in cheek, but the other night I was watching House and had a thought, just a thought, that perhaps he could have AS, too, but not actually playing as if he has the disorder. It was a newer repeat and it was about his (Dr. House’s) obsession with a soap opera star and he knew that he was having medical issues simply based on the fact that his lines were taking a “split second” longer to recite (on the soap opera). So House kidnaps him from the studio and takes him to the hospital and so on … you know the drill if you watch the show. And if you don’t, House miraculously figures out what is wrong with his patient--as he does for all his patients’--unusual medical conditions or mysteries. But at the same time, House has very poor social skills, to say nothing else.

Interesting though. Or perhaps I’ve just officially jumped on the proverbial bandwagon of needing to get a life!? And in that case: don’t worry, I’m trying!!

Wednesday, November 12, 2008

An epiphany of sorts

One day, many years ago, I was in the waiting room at my local rehab center waiting for my kids’ therapy appointments to begin. It was always a bit of a triumph to sit and wait out both of my kids’ appointments. I would schedule their OT and speech on the same day and have their sessions (or try at least) to coincide so that one child does not have to sit and wait for the other to finish, or at least for very long. Twice a week I would be there with my two young autistic kids waiting in the waiting room for this sort of “marathon round” of appointments. I would be there for almost two hours in the waiting room, myself.

On this one particular day, this one woman, who I had seen only once before, was waiting with her kids—and as I noted, she only had one child who attended therapy—as did most. She approached me while I was waiting out the ten minutes for my kids’ therapies to begin (but seemed like an hour with my two). I was in the middle of the crowded waiting room and trying not to pull my hair out (or worse, cry) because my kids were always so unruly in contrast to the other kids. I could tell that she wanted to say something to me and then finally conceded and said, ever so wholeheartedly, as in holding her hand to her heart while disclosing her ever so humble thoughts standing in the center of the crowd, “I can’t believe what you do! And for the first time I don’t feel bad about my situation. Thank you for making me feel so much better about my life.”

Oh, yes she did.

Now you might be thinking that my next few thoughts were something like: I was so shocked and dumbfounded that I just didn’t know what to say to her; can you imagine the audacity, the rudeness? How self-absorbed she must be and totally uncaring about my feelings … let’s face it, she just insulted my kids.

But, no. On the contrary, I smiled and agreed. You see I knew this woman’s state of mind—as I know the state of mind of almost everyone who has an autistic child. We are all "one" in this waiting room, even though very few people would admit to it or even talk about or ask about another person’s child (the autistic ones that is). I think we just kind of knew about the lives of our female, and some male, counterparts, so why go there. We talk about the weather, the other classes that our kids are in, the schools that they attend, but let's not go any further, shall we. It is a strange but unspoken rule …

So when this woman said this to me, I smiled because it was true and I was glad that she had this epiphany—of sort, and when she went home that evening I imagined that she would have had this very same discussion with her husband, Hey, Hun, we’re no longer in the crapper with our kid, because I’ve just met someone so much worse off than we are … Yahoo! And break out the champagne; we are free and more normal than we think!!

I was thinking that perhaps that was my job. To push her reality into a power and knowledge that she was not as bad off as she had once thought. And if she can be happier and a better friend, mother, wife because she saw my (much harder) life up close and personal, then Wow, I’ve done something wonderful here, and didn’t even try.

And just think how nice, thoughtful, caring and special she was to let me know it, because I imagine that there were quite a few people who looked at me and my life and thought, Phew, at least we don’t have a life like hers.

Tuesday, November 11, 2008

When the dust settles, then what?

It's the strangest feeling but I've never felt so bad in all my life. Not that I'm depressed because I’m really not; I really don't get depressed, actually. I know this because I’ve always had quite a bit to be depressed about but just never fell into that kind of hole. It’s a personality thing. If I felt bad about something, I would just become proactive and just fix what was making me feel bad in the first place. The best example of this is when I first learned that Meghan was autistic. Yes, of course it was upsetting, but instead of getting depressed or worse, going into denial, I was determined to make it all right. For her and for me. My mission was to fix her. I know that sounds ridiculous. How can I fix my child of her developmental disorder? But that is what I was going to do. Perhaps it was just my way of dealing with her diagnosis. I don’t know, but I thought that every scientist that was being paid to work toward helping “cure” autism (and very little because very little money was designated to autism at the time) that they were not as motivated as I was to cure the disability. I thought, give me a scientist who had an autistic child of their own and who was as committed to curing autism as I was at that very moment. And as far as I was concerned, the clock was ticking—she was three and I thought that I only had four more years to cure her. I know that you're thinking, “crazy,” but that is what I thought at the time. How arrogant right? Well no. In one of the many books that I’d read, one was “Let Me Hear Your Voice.” It was about a mother (just like me) who was determined to “cure” her daughter and did—as far as she was concerned. The only difference between her and me was that she was much richer and could pay for the same resource that I had to fight for from my local school system. But I do remember thinking that money would not stand in my way… and so was the journey of fighting for the future of my daugther—getting the best neurologists, phsychologists, ABA teachers, therapists, etc …

And if that wasn’t enough for me, my son was next on the "just diagnosed of a major development disorder" list. But I got mad, not depressed.

And when I knew that I needed a break from autism and all of its venom, I would take that break and either go on vacation—to recharge, or go to work.

My point here is that I would always be so charged up and determined to get out and do something—anything. The excitement of life was still alive and strong, even though I was living with two very real reasons to shut down and take cover. I was on the path of discovery and learning and challenging myself everyday. And I wouldn’t do it in a small way either. One day I was writing a book, yes, I had it in my mind and was determined to write a book (still working on it by the way) but I was in a slump; so, I remembered what an old college professor had once written, that when he had writers’ block he would write poetry. So, I started a fresh Microsoft word page and began to write a poem—and within seconds, literally, I had a much-needed-to-be-released poem with tears pouring down my face. I was not only amazed at what was coming out, but I was hooked because if made me feel so much better. It was the therapy that I, apparently, had needed but was too cheap to pay for the professional kind. One poem led to another and soon I had a small book of poetry. But I didn’t stop there. Nope. I needed more. So I contacted my old poetry college professor and told him about my new found love and need. The next thing I knew I was attending his readings, lectures, forums, and book signings—and wanted to have an affair with him, too, but let’s not go there (that’s a whole other psychological matter and post). Then he hooked me up to an old poetry tutor of his from France (she was from France, I didn’t go to France) and I was getting private tutoring. The goal: release a book or start a magazine. Neither was accomplished.

I guess that best way to describe that scenario was the old saying: this too shall pass.

See a trend here? Personality problem?

At the time I called it personal growth and development. And I did the same thing in the two business ideas that I was determined to start, developed and make successful. I just didn’t do things too small, I went full speed ahead and went for the gold, but settled for the bronze.

I guess the point that I’m trying to make is that now things are moving in all the right directions … personally and, to a very small degree, professionally--I like being a freelance reporter and when the economy is good, again, then I'm sure I will be happy doing just that. But in the meantime, I've got to find a way to get back my zest for life and that familiar zing for personal growth.

What happened to me? Do I just thrive on complexity? Maybe I'm just one of those people that need to be overwhelmed and overworked in order to see straight. I think so. Or maybe it has something to do with the fact that I’m turning 42 next month. I just don’t know.

But my spell-check is not working, so that's interesting!!

Monday, November 10, 2008

Meghan and Round 2 And ABC News On Call Videos

Meghan came home for her second weekend since she’s been at school. This time it was a great success. She’s in a routine and now knows what to expect. There’s nothing like getting into a routine and a comfort level—for all of us. She knows home is a time to relax, unwind and realize the rigid demands of school are not applied to home life.

I want her to know that she is on a mini break for two weekends out of the month. A chance to breathe and, perhaps, reflect on what’s going on in her life; perhaps even appreciate the good opportunities that she has been given: a good school with excellent teachers to push her emotionally, academically, and behaviorally so that she can have a future.

Tough love, perhaps, or military-like school, I don’t know how one sees this sort of thing; but I do know that it was the only way for her (and for us) and I think that tough love is a whole lot better than giving in and raising a disobedient, disrespectful bully of a child/woman.

She was so happy this weekend. Giddy, more like. From the moment that she got off the van and grabbed my hand and led me back to our house, she knew she was home. A place to be among her family in a relaxed environment and comfortable—a vacation. She enjoyed watching television with us, playing around with Nick—they have their own way, and, of course, helping herself to the fridge. And when I said that she couldn’t have something, she backed down and put it away. This was very good—progress, in fact, because in the past (before residential school) she would have had her own way and fought me off full force.

So I am seeing progress: behaviorally, verbally and respectfully (at least this weekend).

And when it was time for her to go back to school, she took her own time to get ready, enjoyed her room and her private time just a little bit longer and when she was ready, she moved on. And when the van arrived and it was time for her to go, she waved goodbye with a sparkle in her eye and a most content smile on her face.

And for the first time, I didn’t feel like crying--until I wrote this post! Geesh!

Also, I loved these ABC News On-call Autism articles and quickie videos describing characteristics of autism and asperger syndrome (AS), especially the benefits of having AS.

Sunday, November 9, 2008

What a Good IEP Meeting Looks Like

I have a new oxymoron for you: Good IEP meeting.

Wow. At least it was for me this time. In the past Nick’s meetings were always more … condescending, in a way. Meaning that the teachers and specialists just didn’t see what I/we had seen in Nick, and if they didn’t see it, then they didn’t believe it. So, it would always be so damn frustrating and I would always leave a meeting with fear and angst. Nick is not as disabled as you might think due to his debilitating shyness, but unless school had seen what we had seen and knew of our son, then they wouldn’t offer him more opportunities at school, both socially and academically.

At last years’ IEP meeting I actually brought in my laptop and showed them a video that I had taped of Nick talking to me about various things during different times while he was home. They were blown away. They just didn’t see him open up, speak and ask questions at school; so, why would they believe me that he does it at home? Right?

You know what they always say: a teacher (school) will never believe a parent and, therefore, not listen. I think that our neurologist (at the time) even admitted that fact.

Sure, all parent toot their kids’ horn more than they should, but I’m not the one suffering from denial about my kids; but I am suffering from an acute opposition to ignorance, complacency and labeling.

This year’s IEP meeting introduced a bountiful of good ideas and opened up more choices and opportunities for him. Not only because he has met all of his goals, but, also because they are finally seeing what I see at home, although on a much smaller scale, but they finally know that he is capable of more.

So push, push, push for more and let this boy start to shine …

I pushed for even more typical peer interaction, a buddy group with his typical peers in speech therapy. Check!
Pushed for a stronger movement in his academics—and we will work with him at home, too. Check!
A push to introduce him to more information, studies and learning styles so that we can learn what he likes/dislikes, etc. Check!

On occasion the members of this roundtable were all talking at once because there was so much more excitement and enthusiasm in the air, the air of humility and some good old-fashioned thinking outside the box for the hopes of one boy.

Now this is why a teacher becomes a teacher? No? I mean I’ve heard the tale before: The myth of a teacher sparked by ambition and believing in the dreams and hopes of their students and to help them become all that they can be; no matter the extra work or sacrifice the teacher must bear. I finally saw it for myself and, frankly, I wasn’t sure it actually existed. The rebel, the history maker, the crusader; is this not the embodiment of a good teacher?

I am also learning that there are great opportunities for him in high school next year. Even though he has to stay in a specialized special needs program because he’s not academically level with his typical peer group, he can move out and mainstream where we see fit … and since there are a lot more programs offered in our high school …

But I will still need to continue to push and advocate for him the whole way through; but then, that’s not my problem now is it?

I feel like Obama right now: I’m running on hope and YES WE CAN!!

Special Note: the preceding positive feelings are subject to change--next year.
But the hope and advocacy never will.

Friday, November 7, 2008


Nick had a doctors’ appointment yesterday and he had to have the dreaded shots, yes, that’s plural. He was so nervous but kept it together; in fact, I didn’t know how nervous he was until the nurse told me that his blood pressure was reading a little high. I knew it had to be the possibility of a shot that was making him so nervous because he kept asking me if he had to get a shot and I answered him correctly “I don’t know.” Well I kind of knew that he was getting a flu shot because he is prone to asthma and it would be best for him, so I kind of lied.

But when the nurse confirmed that he was to have 2 shots including the flu shot, I told him the truth right away: “Nick you have to have two shots today, okay.” I explained the flu shot, but he already knew about that one and then I told him about the other and he said “Okay” to the doctor, like a brave soldier. If it were I, I would be tearing up and begging NOOOO!

But we all knew that he was slightly nervous (or petrified) because his blood pressure twice read 130/80, higher than it should be. So the nurse and doctor thought it would be best to take it a third time after the dreaded shots.

So much weighing in on these shots … now isn’t there?

When it was time he started to take it like a “man” oh, how I hate that expression, I don’t believe anyone should have to take anything like a man, even a man.

I forewarned him not to look at the needle, just turn away and you won’t feel the pinch as much. It didn’t work, because he kept watching the needle and moved his body away as if the nurse was trying to stab him, so I got on the other side of him and turned his face toward mine and he did finally surrender by stiffening his head and squeezing his eyes shut while looking toward me and I couldn’t help but hold his cheek toward me and kiss his forehead every time we heard the nurse say “a slight pinch …”

Just like a mom would do for her little boy, even one at 14. No difference.

Then his blood pressure went back to normal. All good! And a war story for Nick to tell!

I have a war of my own this morning with the dreaded IEP meeting. I’d rather have a stab in the arm than the shots that I'll have to take today.

Thursday, November 6, 2008

Mission, Goal, Obstacles in Special Ed

Warning: this email contains the idea of some foul language. But I’m a mom of a kid in special ed (Life Skills), so WHAT do you expect!!??

I’m on a new road and I'm going to hunt down—like a mad dog—a neuropshyologist if it’s the last thing I do today. HA! mad woman alert on the hunt for Red October (so to speak).

Mission: find a neurophysiologist who will actually help me w/o it costing me my shirt. This doctor must be willing to work and offer me "real" suggestions not “Well I don’t really know what programs are best for him, perhaps you could look around!!” Okay, OKAY! The last time I was "hunting" one doctor actually told me (full of sarcasm but dead serious) that if I were looking to change my career that this would be a good field to go into … “so I can’t help you but have a nice day!” Not good!

Goal: to find a school program or technical studies for Nick so that he has a future. My kid is falling through the cracks and I’m not gonna take it anymore!!

Obstacles: ass**** doctors who will tell me to pay and pay big out of pocket or no dice. Bast***s. The last time I tried this, I got an 800.00 bill for a 10-minute (yes, that’s 10 WHOLE MINUTES) interview, just an interview. Even the hospital administrator thought that it was an outrage, so he charged me 150.00 instead. WTF!!

Okay, yes, I’m angry. But my kid is not being taught at school. He has a new teacher this year and apparently--not very good. He is totally being "underworked" and underachieving, and to be honest--nobody really cares.

I need real answers and real resources so that I know that my son is on some kind of a track, any track, for a real future. Because when I’m sitting down tomorrow morning with his school (teachers, specialists, director of special ed) for his IEP meeting (gotta love those) I want to know why he came home from school with 2nd grade work under his belt. Bull****! Even Nick thought it was, um, a bit easy! "No Mom, don't say anything, I don't mind!!"

We all know too well that special education has its issues. If we, as parents (and as advocates) don’t stay on top of it (them), then nothing will ever be achieved for our kids.

I will give a very good example: One day last year Nick was supposed to have a field trip and his special ed teacher wrote a nice little note stating that since they really didn’t have the resources (meaning extra staff to attend the field trip with the kids) then they were not going to have our group of kids (meaning special ed) attend this field trip to Camp Wing (to learn great things). So if you just sign this permission slip stating that you agree with me that our kids will just stay at school and not attend (this wonderful program) but instead we will do something fun in lieu of not going. Okay, sorry and thank you very much. Signed, The Teacher.

Hahahahah (hysterical laugh, Mommy hysterically laughing here), who do (she, they) think they're f***ing with, anyway???

Well apparently I was the only parent who wrote a not so friendly email to the teacher, director, her director and superintendent (and would have sent one to the president of the United States if I had his email)--shaking mad that it took me 5 minutes just to type One. Clean. Sentence. My response went something like:

I am a very, very angry parent right now and that this is an outrage and violates my son’s civil rights, but you already know that—don’t you. There was obviously no planning that was involved in this field trip, thus, no plan to attend in the first place. I think we all know what needs to be done here to rectify this situation. If this is not addressed and rectified immediately, I will be contacting the Department Of Education and the Department of Civil Rights to officially complain. You have a chance to do the right thing. Again, I am a very, very angry parent.

So what happened, well you probably already know the a** kissing that went on … and the teacher was, um, thrown under the bus, of course. But, of course, my son went on the field trip and was just one out of two boys in special ed who went on that field trip with their typical peers--which ended up being wonderful for those boys and a lifetime memory.

Too bad for the other kids and too bad about their foolish, foolish parents! Now that’s sad!

I bring this up because there was a field trip to John Quincy Adams house for history class today, which Nick is very interested in visiting and learning about, hence all of his questions about John Adams and John Quincy Adams the other day.

Tour the house yourself here

... And you thought you would just get fearless bitching with this post!!

Wednesday, November 5, 2008

Rain, Rain, Go Away because my baby is getting autism

Victory for Obama, Yahooo! What an earth-moving celebration. This morning headlines read all about the celebrations that happened all across the U.S, including outside at the White House—reports have said they haven’t seen anything like it before. Wow!!

What a good escape from this other headline news that rainfall could now be the culprit for causing autism. Yeah, back to our reality. Yikes. I think I’ve heard it all now …

For all of you adding up all of the possible causes of autism from researchers over the years, this is certainly a newbie!! Reported by Reuters …

Children who live in the U.S. Northwest's wettest counties are more likely to
have autism, but it is unclear why, U.S. researchers reported on Tuesday.

No more are the days that I sit down and think back to all of the things that I could have done wrong during my pregnancies or exposed my babies to vile things like household chemicals, tuna fish that I may have eaten or given to them. But rain, hey, I couldn’t have controlled the rain so sigh of relief!!?

The researchers said their study supports this idea.

Perhaps infants and toddlers are kept are kept indoors in front of the TV more in rainy climates, and that somehow causes brain changes, they said. Or perhaps they breathe in more harmful chemicals while indoors.

Vitamin D deficiency caused by insufficient time in the sun might also be a
trigger, they said.

"Finally, there is also the possibility that precipitation itself is more directly involved," they wrote. Perhaps a chemical or chemicals in the upper atmosphere are transported to the surface through rain or snow.

My head is spinning!!! Thank God I’m not one of those neurotic mothers. But I’m starting to feel bad for all of those brand new moms worried to death that their kids could get autism.

Tell me something. Wasn’t New Jersey one of those states with a high rate of autism a few years back? I thought I remember hearing that?

Anyway, here is the full story report from Reuters,’ Autism Linked to Rain Study in case you missed it yourself.

Let me know what YOU think??

Tuesday, November 4, 2008

Something In The Air Today

What a nice day it was today! The weather was so fine at 64 degrees give or take, but for the NE that is just grand for this time of year. Especially when I had to scrape off the frost from my car yesterday morning and staring at the temperature gage haunting me at 32 degrees.

I really do like the fall, after the shock that summer is over, and it is on a day like today that I (we all) really can enjoy the fall. Mild weather, beautiful shades of reds and yellows glowing from the trees. Soon snow will be the only thing glowing, but enjoy this while it lasts.

Next to the weather being fine, Nick and I were off doing our errands for the day. Nick had off because of voting today. This is the first time the local schools in my area have designated no school on voting day due to safety reasons. So fine. Nick will come with me to vote and learn a thing or two. Or maybe not ... but that comes later.

First stop to any daily activity, of course, was … now all together yell

A STARBUCKS VISIT. Yes, very good!!

And as I pulled up through the drive thru, where I say my hellos because I’m a regular and (sadly) I know (almost) everyone by name, I got a freebie. Yup, giving them away for voting day. Now how about that for another good start of the afternoon!!

Then next was a visit to Staples. I needed to have a few copies of my resume printed up because my printer needs more ink and I’m too cheap to buy some right now. So on the check out he asked me for my REWARDS card and I told him NO because that would require additional work of filling out the paperwork. Not that I'm that lazy, it’s just not worth doing since I don’t go to Staples that often. And it’s not like other rewards card where they just hand it to you. So the guy offered to fill out the form for me since he had my resume anyway and just handed me my new rewards card.

Oh, presents!!

Next stop was the voting booth where there was absolutely NO LINE … Just walked right in and right thru. Yummy!

Then to the supermarket where I saved 20 dollars (rewards card) on my groceries w/o even trying ... this time. Extra Yummy!

So what was it about today? Oh, I think I know …

They best way to describe today was how Nick put it while we were just starting out driving to our destination:

Me: We have to go vote today, Nick.
Nick: Yeah, no more Bush, he’s a dummy!
Me: (HAhahahahahahahahhahahahahahahahahahahahahahahah!!!!!) No comment.
Nick: I mean he wasn’t good.
Me: You are so right; he wasn’t a very good president! But today we get to vote for Obama and set the world right! (I mean left).
Me: did you vote at school yesterday?
Nick: Yeah.
Me: Who did you vote for?
Nick: McCain
Me: (Whhaaaaaaaattt!!! ) Oh, really! Why?
Nick: I don’t know!
Me: Well you must know why?
Nick: (smirk) Sarah Palin
Me: (OMG)


Monday, November 3, 2008

Activities and Resources for Kids on the Autism Spectrum

I’ve posted a comment on Autism Blogger because someone had asked “What are some good activities for autistic kids.” My response was something like as follows:

I think swimming is a great activity for all areas of the autism spectrum. It's great exercise plus it's a great resource for sensory and deep pressure needs. My kids have always come out of the pool feeling better, calmer and more engaged. If you have an in-door community pool or a YMCA in your community, then this is definitely worth it. My area community pool costs us about $5.00 per person to swim and we pay as we go.

Community autism-sponsored programs like the Arc, Autism Community Resources or similar groups (look around) sponsoring activities in your area like music or yoga classes, free day camp, hayrides in the fall, and Christmas party events that are specifically designed for autistic kids—and a lot of these programs are donated or privately funded so they are free for your kids. I remember one event that we participated in through the Autism Community Resources (events for autistic kids and their siblings--so typical peers would also attend). It was a hayride at a farm, which was very nice, and then they hosted a HUGE campfire and offered hot dogs, hot chocolate and other fun foods, like smoors. Then all the kids sang songs around the campfire. It was a great evening. Other events have been day camps (packed with activities and music events) and I think we even saw Seusical the Musical through this group at a theatre, intended to include autistic kids. It's a great organization! And such great people!!

Even some community programs for typical kids like karate, or wall climbing is great for kids with autism, and are usually welcoming—my son has had some great instructors who have helped him “fit in.” And the kids in the class learn to be welcoming, helpful and friendly. So don’t be afraid to talk to the instructor and ask.

Social skills classes are also a great find if you find them for a reasonable amount of money. Most (at least in my area) are at least 50.00 a group session, but sometimes group organizations (like the Arc) offer them for much less by a qualified special ed teacher. My son has enjoyed these classes for fun peer interaction (game playing, etc.) and has benefited by learning social skills.

A friend of mine, who has a son with aspergers, loves to play an instrument in the band. He does well and fits right in. As she has quoted "Who knew!"

Autism Community Resources in Southeastern Mass.

Autism Community Resources in Western Mass.

The Arc of the United States, for a chapter near you.

Google autism resources or community resources for your area.

Saturday, November 1, 2008

Palm Beach Walk Now for Autism: A Message From Autism Speaks

2009 Walk Now for Autism Palm Beach County Saturday, February 21, 2009Flagler Drive in West Palm BeachCheck-in 8:30 AM - Walk Start 10 AM

The Palm Beach Walk Now for Autism is set for Saturday, February 21, 2009 on Flagler Drive in downtown West Palm Beach. Join us for a family friendly, non-competitive walk and a morning of fun for the entire family. Register today and start your fund raising to support the mission of Autism Speaks. Everyone that raises over $500 will be entered into a drawing for a prize from Autism Speaks.

Help Kick-off the 2009 Palm Beach Walk Season! Please join us and our Corporate Visionary Sponsors on Wednesday, December 3, 2008 from 11:30 am to 1:30 pm at the Palm Beach Airport Hilton at the Palm Beach School for Autism and Fetterman and Associates for this exciting Kick-off Luncheon where you will receive all the tools you need to be part of the 2009 Palm Beach Walk Now for Autism and learn more exciting news about Autism Speaks. Find more information and RSVP.

Walk Team News: Congratulations to David McKibbin (a young man with ASD) for starting the first Palm Beach County Student Club for Autism Speaks at Bak Middle School of the Arts. Recently we spent a day at the school talking to students about autism and how student involvement can change the lives of everyone at the school. Meet David at the Kick-off Luncheon on December 3. The Bak Student Club for Autism Speaks has already started their fund raising efforts by selling candy during lunch. We want to spotlight you and your team fund raising efforts! Send your fund rasing story to and see it in an upcoming email blast.

Providers Wanted: If you are or have a provider that you think would like to join our resource fair on walk day please let us know. Part of the event is to provide families with great information about local community resources. From therapists to programs to adaptive music and sports; we want to know about it and share it with our families. Providers can contact us at or call 800-610-6227 for more information.

Family Services: So much has been going on within Family Services that it is hard to keep up! The School Tool Kit is being used by many schools to help school personnel from the principals to the bus drivers to understand autism and how to best work with and communicate with children who have ASD and Aspergers. View and download the The School Tool Kit now.

The 100 Day Tool: Kit for newly diagnosed families is now available in Spanish! This is a wonderful resource for families when they first get the news that their child has Autism. Take a look and please share with families that you know would benefit from having this information in Spanish.

Science: The Autism Genetic Resource Exchange (AGRE) is a repository (gene bank) of genetic and clinical information that is made available to autism researchers worldwide. AGRE is currently recruiting families that have two or more children diagnosed on the autism spectrum (autism, PDD-NOS, ASD or Asperger’s syndrome). Find out how you can participate and other exciting science news.

Don't forget to register today for the Kick-off event on December 3, 2008 and the 2009 Palm Beach Walk Now for Autism on Saturday, February 21, 2009. Together we can find the missing pieces to the mysteries of autism!We look forward to seeing you soon.

The 2009 Walk Leadership