Friday, October 31, 2008

HAPPY HALLOWEEN

Oh, Healthcare, how miserable thou art Healthcare.

First off, I am signing the consent form so that Meghan can have a flu shot this year. Noting thimerosal-free. Nick's is next week because he has asthma.

Also having terrible healthcare issues. Again! It’s the usual song and dance and proof that nothing is ever simple when it comes to doctor visits, autism and the bloody health care war. I pay for health insurance like everyone else, so why is it always so difficult to get anything covered?

Meghan’s new pediatrician—the one near her school—is covered on our health insurance, otherwise she wouldn’t be able to got there. And I’m relieved because this pediatrician is a great resource; he comes to the school once per month to see the kids, so they don’t have to go to his office. And he works with the superior nursing staff at her school (our own personal nurse and contact person) and they are both very good and very thorough—hence the four calls I got from her just yesterday. She calls whenever Meghan needs to have medical services. Lately, however, Meghan has needed to visit both Children’s Hospital and Metro West Hospital for tests. Children’s for an audiology visit, since she hasn’t had a hearing test since she was 3; and since the pediatrician asked for the test and gave the referral, then why did I get a 400.00 bill in the mail??? Now the doctor wants her to have a formal scoliosis test (Meghan doesn’t stand up straight) and even though her spine appears to be straight, they want her to have the test. So, I said HOLD because I need to call my health insurance and see if it’s covered, hence the 400.00 “surprise” and due to the fiasco from last year, this is not a sure bet.

Last year I visited Franciscan Hospital with both my kids so that I could have another (formal) evaluation of their progress and another professional diagnosis for Nick. I was told that this hospital was wonderful for formal evaluations. I made sure that my health insurance would cover the appointment and they had assured me that it would be covered; even the hospital assured me that my health insurance would cover the cost of the evaluations.

On the day of the appointment, which took almost a year to get, we saw the doctor for only 10 minutes. Apparently our first visit was just for a meeting to find out what we wanted. I was confused because I thought I’d made it clear of what I wanted. Well the doctor, who wasn’t very friendly—actually she was very moody—took our information about the kids, measured their heads (like that was necessary) and then we were out of there in 10. That’s 10 minutes. I know this for fact because my parking meter told me so.

Couldn’t we have just done that over the phone, and then I could have shown up for the actual evaluations?

I was then, again, placed on their waiting list for the actually ”work” that the doctors would have to actually “do.” In the meantime they slapped me with an 800.00 bill for the whole 10 minutes for their trouble. And due to a technicality in how the hospital billed my insurance, it was not covered.

Ohhh, did I raise bloody hell! After 2 days worth of phone calls, the hospital finally told me that they would "settle" for 100 bucks, after the 50.00 I’d already invested in the copay.

When it was all set and done, it cost me 150.00 to take off a day of work, drive 1.5 hours each way for only 10 minutes and all FOR ABSOLUTELY NOTHING!

Then I called Children’s Hospital (last choice for an evaluation, but I had no other alternative) to have Nick re-evaluated and they told me that they couldn’t be certain if my health insurance would cover the evaluation until on the actual day of the visit. Strange, but true! So I declined.

O healthcare, healthcare, wherefore art thou healthcare.

Wednesday, October 29, 2008

Need More Information About Twitter and LinkedIn

I’m not all that technically-inclined, if that is the right word for it, so I am not getting the point of Twitter. Bonnie from Autism Family Adventures had recently asked me if I am following Twitter and to answer her, yes, I have a login account and have registered. I know she has plenty of followers, but I’m not clear on what is the point if I already have a blog. If someone can email me or comment on what they like about Twitter or why it’s great for them, I would love to know.

And LinkedIn for that matter. Anyone a member of that? If so, how does it work and what does it do to help you?

Thanks for your help from your not so technical or linked friend.

Autism Walk Congratulations/Thank You -- From Autism Speaks


Congratulations and Thank You!
We Did It! Over 600 teams and 20,000 people came together at Suffolk Downs Racetrack on Sunday, October 19th to raise $1,115,000 to date and counting for Autism Speaks! Despite the cool weather and winds, walkers united in one strong voice to change the future for all who struggle with autism spectrum disorders – and the community was listening! We had fantastic media coverage of this event which is so wonderful since the event is equally about fundraising AND awareness! Click here... http://www.autismspeaks.org/walk_events/greater_boston_walk_2008.php for a brief recap of the Walk and YouTube footage from the event.

Fundraising Continues
You can turn in donations for this year's walk through December 31, 2008 and still receive credit to your personal or team fundraising. Please continue to raise funds right up until this date. It’s not too late to qualify for our great incentives!

$250 - $499 Walk Now for Autism Lunch Tote
$500 - $749 Walk Now for Autism Duffel Bag
$750 - $1,499 Walk Now for Autism Sweatshirt
$1,500 - $2,499 Walk Now for Autism Blanket
$2,500 - $4,999 All the Above Gifts
$5,000 - $7,499 Portable DVD Player
$7,500 - $9,999 iPod Nano
$10,000 & Above iPod Classic

Please send any additional donations to the address below and include a donation form for each contribution, with your team name and walker information to get proper credit.

Autism Speaks
Attn: GB Walk Donations
5455 Wilshire Blvd, Suite 2250
Los Angeles, CA 90036

Due to the large volume of donations received on Walk Day (over $200,000), it will take time to enter all donations onto the website. Please be patient and know that we are working as quickly as possible to update your team and individual totals. Additionally, the incentive prizes will be ordered and mailed to you after January 1, 2008 to ensure proper credit to all participants.

Ebaying for Autism
Want the perfect gift for a Celtics fan or sports memorabilia collector? Check out our Ebay auction for the Greater Boston Walk Now for Autism. We have a 2008 Celtics Championship team basketball - autographed by the entire team! Check it out at: http://cgi.ebay.com/ws/eBayISAPI.dll?ViewItem&ssPageName=STRK:MESELX:IT&item=260305429779.

Never too Late... Did you find yourself running out of time to do those extra fundraising ideas? You can do them now! Host a dinner and charge $10 a head, throw a movie night at home with friends and family and tell folks to drop their donations at the door... the ideas for wrap-around events are endless. In lieu of holiday gifts this season, ask family and friends to consider a tax deductible donation to your Walk fundraising! You could also do this for birthdays, showers, etc. Continue your email and letter writing campaigns and add pictures from the Walk. To find more ideas about how you can fundraise post-walk, visit the fundraising tools link on the Walk Website.

Matching Gifts: If you have matching gift forms for you or your donors' company, please complete the employee section and mail to the address listed above.
Team Photos: Within the next month, all team photos will be emailed to each team captain.
Thank You! Thank you for joining Autism Speaks as we continue to tackle autism. The 2008 Greater Boston Walk Now for Autism was a HUGE success thanks to YOU! The goal for the Greater Boston Walk Now for Autism is $1,600,000 so let's keep the fundraising going.

A Message from Greater Boston Walk Co-Chairs
Terri Farrell and Deirdre Legge

Our hearts are full today as we reflect on the past six months. We have met such incredible people during this journey and we are grateful to the thousands who have made this process so rewarding.

During the most difficult economic time since the depression, we have received the most generous gifts of time, talent and dollars. We are so fortunate to have had support from our friends at Suffolk Downs, Boston Culinary Group,Teamsters Local 25, Randy Price and WHDH Channel 7 News, Uno Chicago Grill, Digital Federal Credit Union and Blair Howell and Mass AV, to name a few. We were so thrilled to have the Honorable Mayor Menino kick off the walk, proclaiming October 19th as Autism Awareness Day in Boston. And thanks to our wonderful speakers, Sean O’Brien, President of Teamsters Local 25, Ann Guay from MA Advocates for Children, and Susan Gloor, Autism Speaks’ National Walk Director.

Words cannot express our deep appreciation for the support of the Greater Boston community. This walk would not have been as successful without the support of the New England Chapter Autism Speaks staff. Our special thanks to Melody Horgan, Greater Boston Walk Director, for her tireless efforts, enthusiasm and dedication.

We look forward to the 2009 Greater Boston Walk Now for Autism event and we hope you do too! With deep gratitude,

Terri Farrell and Deirdre Legge
Autism Speaks … Greater Boston is listening

Tuesday, October 28, 2008

A Small World After All, and Weird…

Ever go to a party or a store and someone says to you, “Do you know who you look like?” I’m sure it has happened to you as it has happened to most of us.

Well for me it has always been that woman in American Pie. Jennifer Coolidge is her name and I didn’t really know her name until recently when someone told it to me. The first time someone told me that I looked like her was at a party a few years back, but I just thought he was trying to pick me up. Then it happened again with a group of friends, then with a deli woman at the supermarket, etc, etc, etc. Then one day I was getting my hair cut at my usual place and my hairstylist says, “Oh, by the way, have I ever told you that you look like the woman from American Pie?" And I did my usual thing and smiled and said thank you (I mean, what else do you say?) and then she says, “She comes in here to get her hair cut sometimes, too.” I turned around sharply and said "Really! " Well apparently she has family in my area. Weird …

Then, today, I was browsing the Internet and just happened to be looking up my high school alumni website and then there she was! Not only did she grow up in the same small town and attended the same high school as me, but she was also only 3 years ahead of me in High School—my sister’s class. Weirder!!!

Starbucks vs. Dunkin' Donuts ?

Why do people scoff at Starbucks? Someone asked me the other day if I was going to get my “expensive” coffee—meaning Starbucks. And I said “Do you know what? Starbucks coffee isn't much more expensive than Dunkin’ Donuts.” To prove it, I got a tall coffee and a doughnut (donut?) the other day and it ran me about 3.00, and the doughnut was a better quality doughnut said the person sitting beside me and who was doing the scoffing.

And I followed by telling him that the coffee (in my opinion) is so much better than its competitor’s coffee. I love the taste of Starbucks' coffee—it has a better, full-bodied taste and it’s not scalding hot to sip when you first get it.

In fact, before Starbucks came to my town, I went into their website to check out where future Starbucks were destined to open—yeah, there’s a link in their website featuring such information. And when I didn’t see my own town in the “prospective Starbucks in your town” list, I noticed that there was a comment section. So, uh-huh—I did!!

My comment went something like this:

Oh, please, please, please open a Starbucks in Plymouth, MA. It’s such a big, beautiful and up and coming town and let’s not forget it’s America’s hometown (so show some appreciation). If you do build one here, I promise to visit a least once a day (and be paying a good portion of the rent from just ordering my large lattes. Oh, excuse my Italian: I mean my Latte Grande!!)

More groveling ….

Well apparently it worked, and very well indeed!! Because they not only pleased me with one Starbucks, they opened two!! I mean, due! Of course, I couldn’t have been happier, and I think I practically had an orgasm by simply driving by the first sighting of the hanging green and white, round, infamous sign: STARBUCKS.

When did I first become a Starbucks addict, I mean fan? I don’t know, I think we go way back … back to when I was working in Boston. And since I haven’t worked in Boston for the last 13 years … then what have I needed to resort to? Home brewing. Dunkin’ Donuts. No offense to them, but I’m looking for that unique taste that I can only get from Starbucks … and let’s not even mention the lounge area in which one can unwind or bring in their laptop and surf the Internet, or meet up with people and socialize on their comfy chairs.

One day I was driving around Boston with the kids and--of course--the babysitter, too—I mean, where would I be w/o my babysitter!! And on the way home from our event (I think we took a tour of the Red Sox field (Fenway Park)—another favorite! Yes, I’m a lifer!!) We were driving home in the middle of a hot, summer’s day and could really use a cold coffee—a mouth watering mocha Frappuccino was what I was thinking, and once I start thinking something like that, I can’t turn back. But as luck would have it, my only chance to go to a Starbucks for the yummy coffee was dwindling away because I was getting close to the highway and could not find parking—anywhere. So I did the only thing that any desperate Starbucks' connoisseur might do, I stopped at the nearest light, handed the sitter a 20 and said two mega Frappuccinos (or whatever’s Italian for mega?) NOW GO… and if she quit after that moment I wouldn’t have cared!! (Well, maybe a little!)

So she ran for it while I drove around the block, over and over and over again, my kids, not to mention my GPS, were not very happy with me and wondered what the heck I was doing!! Until I saw the sight of our heavily angel! Yes, it was Her—my sitter, smiling from ear to ear and holding two delicious, mouth watering, mocha Frappuccinos, dripping with pure-white, heavenly-sweet, cool and delicious whipped cream in each hand. Did I mention they were drizzled with yummy, gooey caramel? “Ohhh!” There is a God!

This could be the premise of a summertime commercial—sweaty, treat-seeking mommy circling the steamy, harsh city with two screaming kids in tow and desperate for a Starbucks' break!!

Oh, can I play me!?

So what do you say? Starbucks or Dunkin' Donuts?

Monday, October 27, 2008

In Defense of the Hard Working Mommies

I was having wine with a friend (not an unusual happenstance for me, thank you very much) and I was thinking about the time a few years ago when a very snobby mother was apparently sick of hearing about how hard a child with autism can be. I was having wine with a small group of women and someone asked me what autism was like, since I have two children with autism. I told her what it was like for me day in-and day-out w/o going into elaborate and boring detail. I said something like Meghan needs constant attention, constant help, and constant redirecting. She is constantly running around, running off and not listening, having bathroom accidents, and always getting naked, etc … and one of the mothers let out a great big “YEAH! Like all the rest of our kids…” as in defending herself and the rest of the moms in the whole wide world who work just as hard so why is my job with the handy dandy word autism in it so much harder?

I said to her after taking another long sip of my wine as opposed to just going for her jugular with my handy dandy little butter knife: “That’s right, your kids are the same and are just as much hard work, but your kids are 2 …

And mine is 8!!!”

BITCH!!!!!!

Not In The Mood For This Right Now ...

I don’t care if he’s a celebrity and a do-gooder for the charities that he does believe in or worse, just wants to sell his book, but he really needs to shut up. I liked this article in the Boston Herald, it’s about a Massachusetts mom, who has an autistic son, taking on Denis Leary (about his latest autism comments) and wanting him to walk a day in her shoes—hey, mine too, why not! (over 50 comments to this article)

I’m usually open to listening to others' opinions and even playing devil’s advocate, but, today, I'm just so sick of listening to uneducated, ignorant opinions about diagnosing autism. Couldn’t Leary learn from the Michael Savage fiasco?

Unless you’re a closet Neurological Psychologist, Leary, then shut the f… up—celebrity or not! And if this is what it takes to sell your book, then you're pathetic!!

Does anyone not agree?

The articles in the Herald:
http://www.bostonherald.com/news/regional/view.bg?articleid=1128012

http://www.bostonherald.com/entertainment/lifestyle/view.bg?articleid=1126755

Homecoming: Finale and a Lesson Learned

I didn’t want to write this post, especially as a follow up to the previous (part I) post. I really didn’t, but I must be honest and accurate. The later half of Meghan’s visit really sucked. Again, I’m not talking about the whole weekend, but the later part (tough) and especially the part where she had to get back on the bus and go back to school (sad). I was working hard to keep it together … sending her off, again, and noting that she would have preferred to stay at home, where she could be lazy. We packed her some food and treats for the ride and she did get on the bus and waived goodbye, and did seem fine, thank God. Nick was in the living room and reading the paper (the shopping for x-mass toys part) and not really noticing that Meghan was leaving. He said a quick bye and by the time I walked back into the house, he was just flipping through the paper like nothing was new. Interesting!!

The later part of the weekend didn’t quite go off without a hitch. At some point on the second night—after such a lovely first night—somewhere between after dinner and bedtime, she took a temper tantrum. Not sure what caused it and I wasn’t in the room (my room) at the time—thank God!! She threw a glass cabinet across my bedroom and, thankfully, missed the windows; then she tipped over an iron bookshelf housing books and a DVD player. Not lovely. After the outburst she sheepishly walked back to her room; I followed after a short period of time and tried to ask her what was wrong, but I couldn’t figure it out. It could have been anything, really: Her clothes, the sounds of the television, sounds coming from the other rooms, the bed comforter not splayed out on the bed quite right. I was just happy that I wasn’t in the room with her and cuddling, because I would have been in the line of fire and surely would not have come out looking pretty …

I’m not trying to sound like a bummer, but, demonstrably, things haven’t changed that much. Not that I really expected a new child since living under stricter rules, continuity and learning to control outburst--even though 2 per day is her norm. Except there was one moment before her explosive behavior that she was taking cheese out of the refrigerator during dinner and the cheese drawer came off its hinge and she said sorry (one of few, new words that she has). Oh, it was soooo nice to hear and we smiled. This is, in fact, new, because if that were to happen in the past, she might have attacked me for the door coming off the hinge (out of frustration)—so a sign of progress.

What is also new is that I forgot how much work she really encompasses. I really had to be on alert helping her everywhere, such as in the bathroom so that she doesn’t use too much hand soap (or all of it at one wash), or too much bathroom tissue, or too much water and flood the sink; these are just a few examples. So the tension is there just being on a constant “listening out” to help her, work with her and make sure that she doesn’t become behavioral—it’s a tough job all day, everyday. I forgot. I really did forget how much work and stress she can be after living without her for so many months. I really don’t know how I managed for so many years living under this constant stress and fear. I think Nick noted it too. This contrast is interesting and a lesson learned. Even though I hate to admit it.

I guess you could say that since she is back at school, I’m on a type of vacation again until next time. And, yes, life is changing for the better--for us all.

Saturday, October 25, 2008

Homecoming: day night # one

Meghan came home for the first time in 4 months. She got off the bus and came through the front door as if she had not been away—just another day at school—and at the same time probably thinking that she was on an adventure. How do you take a girl from one life to another so easily? To us it’s a simple bus ride; to her it must be a life-altering expedition. I wonder? She was a bit out of her element, but nothing like her first night being away from home in 13 years when she first started school. I remember that day and night all too well; I had to think of it as camp for the summer, as many kids, even kids on the autism spectrum participate in overnight camps for extended periods of time. It was tougher for us than if was for her, from reports—and a fortunate sort of lifeline for us to this kind of suffering. Remembering back to calling her house on the very first night and then the next morning for Meghan’s reaction to being in a foreign house with foreign people and roommates for the first time in her life, and let us not forget being among girls “sisters,” as opposed to boys and a brother; she was kind of like whoa, what’s this and what’s going on … but she was not upset. Again, it’s a great comfort (and a gift) that she sees life as an adventure, and nothing less. What horrible thoughts could pop through her mind, I just don’t know. Not yet, at least. I think her first night home might have been a little similar to the first night at her new school, a sort of what’s-this-and what’s-going-on kind of reaction. Of course she knows her house and us and would exhibit comfortable behavior and occasionally would come and go from the kitchen to get a little snack (monitored), but more of a "free pass" than she has at school.

Later, she and I had fun snuggling up in bed (my bed) and watched some programs. The only different or odd thing was that she still had on her sneakers (an at-school policy, usually with her crocs, but she only had her sneakers with her). Nick came in once in a while to wrestle and harass her; his form of brotherly love and it was nice to see. This kind of love and attention is something that I know she doesn’t do with anyone else. At school, television watching is usually with a group of girls for a movie night, and her TV in her room (which we supplied) is for just a small period of time at night while she’s in her room getting ready for bed. Sure she interacts with teachers and does a “belly hugging” kind of thing with them (squishing people’s bellies is what she likes) and they love her spirited personality, but it’s not the same. I think she was comfortable with us—like home again from college. I was happy to share this time with her, and I think she was too.

When it was time to sleep she was still fully dressed and I had to ask her to get her pajamas on and handed them to her. This was the strangest part of her visit. She was still sitting on her bed and watching her television so I walked away for a few minutes wondering who this stranger was in my house. But when I came back she was in her pajamas and nestled in bed (under her new comforter) and watching her TV on low with a huge smile on her face. I walked in and kissed and hugged her goodnight and she did her usual patting my belly while smiling and then she let out a giddy, little laugh--I was relieved. After I said goodnight and turned off her light, I glanced back at her room and took in the sight; for the first time in 4 months her room was warm and full of life.

Thursday, October 23, 2008

Meghan's Coming Home Tomorrow

Meghan's coming home this weekend!!! YAHOO!!

This is the first time in 4 months that she will be home. Exciting, scary, strange: it's all a bag of emotions ... what will she do when she walks into the house for the first time in 4 months? Will she have missed her bedroom? Will she want to leave as soon as she arrives? Will she never want to leave? Maybe I'll run out right now and buy her a new comforter for her bed! And clean the house. Maybe buy some treats. Hide the hand soap and shampoo ... wait, is she still a dumper? Food shopping, definitely go food shopping!

Will I wreck her?

Good grief you would think that the president of the United States was coming for the weekend! Where's the red carpet?

Meghan on Sunday: Meghan update

We saw Meghan on Sunday, our usual day for visiting since she has school 6 days a week. When we walked into the house we found her coloring with a teacher, one of her favorite indoor activities, so I was not surprised. And fashioning a big smile, which I was glad to see. We sat down and visited with her and some of the other girls and teachers as we chitchatted for a while. You can really get to know how much a teacher really knows your child by the casual chatter. It’s refreshing to learn and "feel" as though the teachers really do care about your child, and they do seem to know and care about Meghan and all the girls, for that matter. It’s using a gut instinct (and overall perception of knowing) and logic (reasonable understanding of the environment). Then again, these teachers should be enjoying their job since they are following their career of choice. I guess it’s like a daycare (or 'round the clock care, in this case) that the teachers are not there to love your child but to accept, respect and essentially “raise” your child. It is a tough thing to admit, that the school is helping me raise Meghan at this point in her life; but it’s true no matter what I may think or choose to believe. What does she think? I wonder. She is old enough for any child to attend boarding school, and I’ve talked to some typical women who had attended a boarding school when they were 12. Of these two women, they both had told me that they loved it. They were young enough to be tough and resilient—as a lot of kids tend to be, and that they adapted to their environment without a hitch. They also admitted that it was the best experience of their life and it taught them independence. So I wonder if Meghan is having the same experience of finding inner strength and independence. I tend to think so, but that would be using my gut instinct (only) to discern.

The logic behind it all is that Meghan needs the assistance of a team of trained teachers around the clock. One man cannot do it alone. She is 12 and still very behavioral--2 x per day is her average in exhibiting behavioral outbursts. Having trained teachers who do this for a living and who are not afraid to work with her is the most important part in helping Meghan become all that she can be. What’s even more impressive is that it’s working--and Meghan loves it.

She was all-smiles when we took her out for a drive. Actually, I’m shortchanging the truth: she was giddy and making high-pitched, excitable sounds from deep within the minivan. She made us smile. And when we drove to Ben and Jerry’s for ice-cream—even more smiles, but that was to be expected. As we were leaving the ice-cream shop with our (even bigger) smiles and happier, chocolate-filled stomachs, I held out my hand for her as we crossed the road and she grabbed it the same way she had always held my hand, with a firm, loving hold as if she had not forgotten; I’m still her “Mum” and that I had made the right decision for her. I left thinking that it’s the same as it was before, just better and within a second set of four walls with an extended family to enjoy; and a happier spirit and a smiling face to show for it.


... And still waiting for our town to organize the bus for Meghan to come home on alternating weekends. A snag or school system politics (bullshit)?

Wednesday, October 22, 2008

In Good Company (of Girls) And Typical Peers

My sister is visiting from Colorado with her kids (my two nieces) and (call me a bad mother) I’m having Nick hang around with them as much as possible. He stayed with them all day Sunday, and I had him take off from school today—it was a half-day, anyway—to meet up with them, again, and have some fun out at Adventure Isle and then perhaps swimming later. Then on Friday I will pick him up early from school so that he can attend a fun-planned afternoon with the girls before they head back to Colorado.

You may think all this attention is for the sake of the girls—a sacrificial playmate while they’re in town and staying with my parents; but not really, the benefit is all Nick’s.

Next to social skills class (which he doesn’t have this quarter because there wasn’t another kid attending who was similar to him and his needs) and school, where he is hanging around with mostly special needs kids most of the day; I want him to socialize with these two girls who are not only close to his own age, but who are outgoing and not on the autism spectrum. It’s a rarity for him--all of his cousins who are close to his age, are out of state. Even though on Friday the planned event is actually an “afternoon tea party.” A girly-girl thing to do, but what the heck!! I will simply remind him that he once attended his cousin’s princess party many years ago (of which he remembers—because he never forgets) where he was the only young prince among a sea of pretty in pink, dainty princesses hosted by Princess Patty (of Princess Parties by Patty—something like that) and they, including one prince, were all having their, um, nails painted, um, pink. Even though, still to this day, he cannot stand to look at nail polish—a flash back? Oops!

But I will remind him that he likes tea and that the little mini (probably pink) pastries will be delicious. And if that doesn’t get through to him, then this easy-to-comprehend- deliverance-of-the-most-obscene-ever-uttered-by-a-parent: “I’m going to release you early from school so that you can attend,” certainly will!!

Oh, the sacrifice!

My New Blog Button

As you will notice I have a "new" blog button which I LOVE!!

Jen who writes the Cheaper Than Therapy blog and who I met from the Mom Bloggers Club designed my button. Her link is below if you're looking for a blog button or header for your blog too!!

http://cheaperthantherapyjen.blogspot.com/

Tuesday, October 21, 2008

"Therapeutic Vacation" for Families Raising Autistic Kids


My name is Jim Keenan. I am a psychologist living in Savage, MN. Recently my wife and I purchased a 14 unit resort. On the property is a full restaurant/lounge, indoor swimming pool and sauna, 250 feet of beautiful lakeshore with boats etc. After a full renovation we opened on Memorial Day 2008. The purpose of our purchase was to create a place where families with a child on the spectrum could come for 3-5 nights of "therapeutic vacations". My plan is that families would stay at the resort, during their day individualized programming would be implemented to begin to address the emotional needs of the non-autistic family members. As you may know, the divorce rates among couples with a child on the spectrum are sky rocketing to greater than 70%. Siblings are often out of the loop in regards to being educated as to how to cope with an autistic sibling. I hope to help families begin their journey to understanding their own situation in a healthier fashion. I plan on using what I call "real time" interventions during their stay with us. We may do average everyday activities such as grocery shopping, going to an event, movie or the park. I plan on providing couples with the tools needed to increase communication around issues that arise throughout daily life. I would love for you to visit my web site at http://www.vacationairelodge.com/. I am hoping to get the word out across the country as I do believe the beauty and tranquility of northern Minnesota is the perfect place to assist families in their ongoing journey of raising a family.

My Son’s Future

My son doesn’t have academic, mechanical or technological interests. OMG!!! You see, I’m on the lookout to find out what he likes and might want to do for the rest of his life. I know that you’re probably thinking that he’s only 14, so what’s the rush? And that most kids don’t know what they want to major in, much less do for the rest of their life (as in a job), until sophomore year of college, if they’re lucky. And if it’s true that the average person changes their career 4 times over their lifetime, then why am I on the lookout for Nick already?

Well, the strangest thing happened to me through my education. I, too, didn’t know what I wanted to do for the rest of my life before college, in college, and after college--for that matter. Strange? Well actually, yes, because all the signs were there.

I had always excelled in English more than any other subject. Trust me, I was not destined to be a math major or a doctor! I loved literature and liked to write. Ask any of my English teachers from junior high, to high school. I even got selected for our high school television program that was only available to seniors and only a certain number “got in.” This program (or class) allowed us to actually run a television news program—or "show" as we called it. It was mostly about our school, the students, teaching staff and personnel. But I had the opportunity handed to me to master what I liked to do (but didn’t really know it) and I was good at it. I worked as a reporter--and got a lot of good compliments from the teachers and other school personnel. Then I had the chance to take on other roles: news anchor, special reporting, sound, camera, direction … we all had the same opportunities and had fun doing it. Great class? Yes. Did I love it? Yeah. Did I also love English and writing? Sure did. So tell me why then that I opted for a business and education degree? I certainly didn’t want to be a teacher, so what was I thinking?

I think that I needed the help of a teacher, a guidance counselor, a friend, or anyone to guide me into journalism, but it didn’t happen.

It took a few more years to straighten this mess out and then I finally did go back to school to study journalism. But my point is that the "signs" were there and I missed them for me so I’m on the lookout for him so that I will know how to help him explore his interests and strengths and help him choose the path that should be taken.

What’s very interesting is that Nick’s interests seem to revolve around the movies; an immaturity or a destiny? But it’s a start and it does sound logical to me that I help him find a high school program (technical film studies?) and follow this direction, or close to it. But the most interesting and peculiar part of this equation is that Hollywood is making its way to Plymouth (where we live) called Hollywood East. They were looking for a place to build a new film and television studio and our town had given Hollywood the green light for Plymouth Rock Studios to be built (2010) on a golf course that is located next to my son’s school and only 5 miles away from where we live. A sign?

Now it I can only get him in. Anyone know somebody??

Monday, October 20, 2008

Dancing with the Stars: from Autism Speaks

Tune in tonight for a behind-the-scenes peek at the new Autism Speaks PSA featuring Toni Braxton.


On Monday, Oct. 20 tune in to ABC's "Dancing with the Stars" to watch a special segment on Autism Speaks' national spokesperson, Toni Braxton. The show will feature a "day in the life of Toni Braxton," which includes exclusive behind-the-scenes footage from Toni's recent video shoot for Autism Speaks' new Ad Council public service announcements (PSAs).
Make sure to vote for Toni this week to keep her and autism awareness in the spotlight!

Click here to find your local TV listing.
Click here to learn how to vote for Toni and Alec.
Click here to donate to Autism Speaks.

*77

A friend sent this to me, (not sure who wrote it) I have never heard about *77, have you?

I knew about the red light on cars, but not the *77. It was about 1:00 p.m. in the afternoon, and Lauren was driving to visit a friend. An UNMARKED police car pulled up behind her and put his lights on ... Lauren 's parents have always told her never to pull over for an unmarked car on the side of the road, but rather to wait until they get to a gas station, etc. Lauren had actually listened to her parents advice, and promptly called *77 on her cell phone to tell the police dispatcher that she would not pull over right away. She proceeded to tell the dispatcher that there was an unmarked police car with a flashing red light on his rooftop behind her. The dispatcher checked to see if there were police cars where she was and there weren't, and he told her to keep driving, remain calm and that he had back up already on the way. Ten minutes later 4 cop cars surrounded her and the unmarked car behind her. One policeman went to her side and the others surrounded the car behind. They pulled the guy from the car and tackled him to the ground. The man was a convicted rapist and wanted for other crimes.

I never knew about the *77 Cell Phone Feature, but especially for a woman alone in a car, you should not pull over for an unmarked car. Apparently police have to respect your right to keep going to a safe & quiet place. You obviously need to make some signals that you acknowledge them (i.e. put on your hazard lights) or call *77 like Lauren did. Too bad the cell phone companies don't generally give you this little bit of wonderful information. Speaking to a service representative at Bell Mobility confirmed that *77 was a direct link to state trooper info. So, now it's your turn to let your friends know about *77.

Send this to every woman (and person) you know; it may save a life.

This applies to ALL 50 states.

Saturday, October 18, 2008

Dropping Mental Retardation

I loved this article. It’s about Missouri governor, Matt Blunt, who issued an executive order to drop Mental Retardation from MO’s (department of developmental disabilities) agency's name. Its new name is Department's Division of Developmental Disabilities. I have mentioned the indecency before in a previous post, and to many people who represent my state’s DMR (Department of Mental Retardation), that we should change that name. It is also noted that of the 5 states that had formerly used MR in their state agency's name, that only 6 states still remain. The article also cites:

Five states and the city of Washington, D.C., have dropped the words "mental retardation" from agency names in the past 18 months. And in 2003, President Bush renamed the President's Committee on Mental Retardation as the President's Committee for People with Intellectual Disabilities.

Only six states still use "mental retardation" in agency names, according to the governor's office.
And "thankfully" my state, Massachusetts, will not longer be one of them.

As reported in the Worcester Telegram, the state Department of Mental Retardation will have a new name. The department will change its name to the Department of Developmental Services on July 1.

Both my kids will have an association with this agency, and Meghan already does for funding to help pay for her residential school, and that Nick will also (most likely) have an association with this department (for programs) and that I would have been horrified to be asked: “Mom, what does DMR stand for?”

Other agencies to note in Massachusetts that help families of children with special needs: The Arc of Massachusetts of which we are a member: The Arc of Greater Plymouth.

Friday, October 17, 2008

Trick-Or-Treat smell my feet … or give me a costume for under 50 bucks, please!!!

My son mentioned that he wants to go Trick-or-Treating this year, again. I asked him, actually, because he is 14 and looks about 18, at least if you're judging him by his height … and that he, um, shaves, and he’s definitely got the deep voice thing going on, but besides all that …

I asked him. And he said, yes. But it was a small, subtle yes, as if he, too, realizes that he might be getting too old for Trick-or-Treating. I don’t know, what’s too old anyway?

We were having dinner at my parents just the other day and they asked him the inevitable question, “What are you going to be for Halloween?” Like it was his choice? I’ve been telling him (working on him, rather) that kids at about 14 or so (his age) go trick-or-treating as hobos – you know the easy and FREE costume! Last year I almost had a small stroke while we were gleefully shopping for costumes and I just so happened to take a quick, indiscreet glance at the prices … and if sticker shock wasn’t the best word for it, then I don’t know what was? 40 bucks was the CHEAPEST costume that I could find (and they were the duds). I was in the fame of mind of spending about 30, 40 bucks — tops — for the best! I could have sworn that that was what I had paid the previous year (s).

I remember last year’s shopping horror as 60 and 70 dollar signs were flashing before my eyes on Every. Single. Costume. (And girls too, I was looking for Meghan, as well, and fairy princesses also came with glamorous price tags!!) So, at that point (of close hysteria) I was found tearing through the racks, body deep in costumes — like a mad woman on a hunt — looking for a good price. Even the sales lady came around and asked if she could help me because I was apparently looking for something “specific.” Little did she know I was “looking” for last year’s price!! Then voila, it happened! The costume that Nick wanted (Batman) was found not only in his size but also at a reduced price of 40.00. Yahoo!! Was what I could have been heard saying (and I think I was) but without realizing that it was this year's yahoo-equivalent of yelling for joy at finding 3 bucks for a gallon of gas!! But I left very happy because I found that 40.00 was a real bargain for one ecstatically, happy boy — so a win-win — or NOT! Read on

So, as you may already realize, I shot a quick glance at my parents who were all too eager to hear about his soon-to-be shopping expedition at the nearest party store for this year’s pick. (Little did they know that costumes these days come with mortgages!!) If someone had looked at me at that exact moment, they would have seen my green eyes spinning up dollar signs! So it was clear (thanks Mom and Dad) that Nick was going to be buying his costume this year, again.

During the car ride home he finally said, “Mom, can I be anything I want? I said a very, very weak, raspy and almost sickly, “yes,” that Nick had to actually lean in to hear. “But hobos are good too”— I said, giving it one last try. He said, “Batman, I want to be Batman again.”

Oh, I know what you’re thinking: Squeeze him into his last year’s model, right? Yeah, good thinking!! Really! But do you know what the one problem with your excellent plan is? Of course not! Well, last year’s “cheap, 40.00” costume had a defect! Yup, that’s right! The reduced price was actually due to a missing element: Batman’s black mask. Now how many Batman’s do you know go out into the dark night (saving people) without his mask? Really now? And we didn’t know about the missing piece until just moments before going out trick-or-treating, so if you want to know what it was like living with Nick for those delicate and horribly sad moments while only just moments before he was so excitedly happy opening his costume bag for the first time — most carefully — as if unfolding an ever so delicate but beloved toy. The sound of horror vibrating throughout his room was clear enough for me. I felt cheap! Apparently it is NOT just about the candy!

Meanwhile poor Meghan was sporting around as an M&M. Oh, come on, she loves yellow peanut M&M’s for 30.00.

But let’s face it; they wear the costume for one hour — tops, then never again. Paying close to 100 bucks for a costume is like paying 1,000 for a wedding dress — but you only pay that once; I keep going back to the costume store every, freaking year!!

I mean, really, what are you getting for 40 + bucks? I’ll tell you: A cheap costume and a disappointed crying kid. I hate Halloween!

Yeah, bah humbug!! And have a nice weekend!

Boston Walk for Autism Update: from Autism Speaks

Greater Boston Walk Now for Autism Sunday, October 19th Suffolk Downs Racetrack in East Boston

Register yourself and your teammates at www.walknowforautism.org/greaterboston
We are just a few days away from the 8th annual Greater Boston Walk Now for Autism at Suffolk Downs Racetrack. If your friends, family and co-workers have not yet registered for the Walk please ask them do so today!

So far we have more than 575 teams registered to participate in this Sunday's Walk. We've raised more than $750,000 to date with your fundraising efforts and our supportive sponsors, including our newest sponsor, Digital Federal Credit Union (DCU) by contributing $50,000!We need everyone's help to get to our goal of $1.6 million. So please remember that it's so important to follow up with those individuals you might have approached for a donation but you haven't heard a response from yet. Chances are they would like to contribute they just need a gentle reminder.New this year - Be sure to stop by the Mission Product tables to purchase your exclusive Autism Speaks Walk Now Skincare Survival Kit or at www.MISSIONproduct.swirclient.com/autismpeaks. The Walk Kit includes 5 must-have products for your Walk, and even better, MISSION donates 50% of all proceeds to Autism Speaks! So come to the Walk and Get Your MISSION ON!

Reminders for Walk Day -A logistics e-mail was recently sent with details about the big day. Here are just a few reminders...
1. There is plenty of parking at Suffolk Downs so we are no longer shuttling people to the Walk site. Therefore, take a little more time for yourself for getting to the event on Sunday. The doors will not open to Suffolk Downs until 9 am when we are all set up and ready to offer you a great day of food, entertainment and activities.
2. There cannot be any animals on site. If you bring your pets you will be asked to leave them in the car so please let them stay safely at home. This is the policy of Suffolk Downs Racetrack and we must abide by it.
3. UNO Chicago Grill will once again be providing lunch for us and Coca Cola and Boston Culinary Group will have bottled water available. Please remember that water station volunteers are required by Suffolk Downs to remove the caps from the bottles before handing them out. Please help us recycle this year by putting empty bottles into the designated recycling containers next to the garbage cans. If you have someone in your group who has special dietary needs or restrictions we ask that you pack them a lunch from home.
4. Come prepared to have a great day!
Thank you all so much for your wonderful commitment to this organization and its mission. We are incredibly grateful for everything you have done and continue to do. The success of this Walk is your success. THANK YOU.

See you on Sunday!
Greater Boston Walk Planning Committee

Thursday, October 16, 2008

In My Spare Time ...

I think I know what’s been going on with me lately. Well let’s backtrack … I was reading Christina Shaver’s blog and responded to her not being motivated (either) post. Not being motivated to do things that had once brought pleasure; instead, just kind of moping around the house.

I’m up at 6:00 every morning to get Nick off to school and then I check my emails from the night before. Then I’ll write some blog, then do nothing; do some exercise, then do nothing; maybe read or possibly take a nap (shhh don’t tell anyone—it’s a secret!!) and if I do get it together, I’ll go to Starbucks. Woohoo!! Exciting life, huh!?

I could be doing so much more with my leisure time, like meeting new people (trying that actually); running around town or the Cape and taking photographs; join a club—well actually tried that once and joined a writer's club when I first moved here but the group already had an established foursome and I was apparently the not-so-welcomed fifth-wheel. Or maybe I could actually … um, find a JOB-thing? Now THAT would be an idea!! Well in my defense, (oh, there’s always one) I’m a business writer by profession and the business world just aint so pretty right now, as you may have noticed. Maybe I’m just brooding about the act of “subtraction” in my 401(k)??

No, I think I’ve just realized why I’m unmotivated or lazy (whatever). I think I’m still adjusting to Meghan being at residential school and now that I have all this “time” and not under a “time-crunch” (as it were) of having to run around like a crazy person to quickly sneak in a life before Meghan came home from school—then all work and no play—that I just don’t know what to do with myself.

In the past I would have made a mental list of things to do and wanted to do—and did do. In fact, one day while my two kids were at school I decided to start a company. Really! I started making lotions. I love lotion and essential oils, so I thought I would combine the two and VOILA, a lotions company was formed—at least it was in my mind. I first had to actually learn how to MAKE lotion (think, think, think -- Winnie the Pooh) and then played around (like a chemist) and figured out what I liked and didn’t like. Then I named it, bottled it, labeled it and soon … "The Naked Girl" was established. At first I had a hand lotion, face moisturizer and a foot lotion. Then like a crazy person, I started blending different mixes of essential oils (aromatherapy) and added more and more products and BAM!—(Emril Lagasse) had an entire line of products with catchy little names like Lavender Lady Moisturizer and Pamper-Me-Peppermint Foot Lotion that was in production (in my kitchen), and in only one week’s time, too. Yup, just feed me some caffeine and I’m off like a race horse!!! Self diagnosis: A bad case of OCD or workaholism??

But, either way, I just kept on going until I had about 20 products. I guess it was an attempt to create a life because once 3:00 pm rolled around, or school vacation threatened (NO!!!!), I no longer had a life, at least without a helper. And the name? It was inspired by my daughter because she was naked until she was about 9 (Yup, a stripper!!), and I needed a break and an “escape” from the constant work of clothes enforcing; and since the lotions were also all-natural, it was most fitting.

I will say that when my mind is set on doing something, then there is no stopping me (good trait, bad trait?); I made the products, scripted and printed brochures, and was off selling to craft fairs galore. And when that wasn’t enough, I decided to share a shop in downtown Plymouth with a hair salon and sold my stuff there.

In the end, the company (if we want to call it that) didn’t do very well—and I wasn’t selling on-line. There was just too much competition and making natural lotion was very expensive. I did have clients (okay, customers) but I think I was simply trying to create a life and have an adventure especially with the challenges that my life presented at the time. It was a creative escape (outlet), and healthy. And I still have the metal sign hanging in my house—a reminder!

And let me not even begin to talk about the concierge business that I started 3 years ago…Ugh!!

Wednesday, October 15, 2008

Autistic Boy (Mine) and an Uncanny Memory

My son, Nick, has a talent besides being a great boy, a prince of a son and a super video game player, he can recall stories, events and people, including their names, better than anyone I’ve ever known. It’s interesting how his mind works; he could be doing anything, like having a snack, jumping on his trampoline or walking around the house and stop and say to me:

“Mom, do you remember having lunch in (… town) at Uno’s restaurant with (… people).”

And I would say, “Oh, yeah, about 10 years ago!! And what were their names?” And he would recall each of their names--like a BLAST from the past--and sometimes even where they sat or what they had said. Wow, where did that come from??

When he was only 5 years old, we were entertaining extended members of the family from out of state (a family reunion due to a wedding) and about 15 of us met for dinner at a restaurant and Nick was introduced to everyone only once (and much earlier that day) and someone asked him if he knew all the people at the table. He said yes, but I could still tell that people underestimated him (the label thing) so I did the “mom thing” and interrupted the speaker and said: “I bet Nick can tell us all everyone’s name.” (I couldn’t help myself, but I knew he would enjoy it.) I was holding my breath because I knew that I could never do what I challenged him to do, especially at 5; but, sure enough, as he circled the table—the room fell dead silent—and promptly pointed to each person and gave us their name, followed by a huge cheer and a high five for one red-faced, belittling uncle.

So, as one can imagine when we meet new people or I have to visit his school for an open house or a breakfast function (dread those), I can always rely on Nick to remember a person’s name even if he had only met the person for the first time himself. Relying on Nick for a bit of his “handy” skill is like our own little pact—only he doesn’t know it’s our little pact. It’s a secret pact, shhhh!!! I know this because sometimes he would choose to shut down and not participate in this little game of mine by withholding such valuable, pertinent and juicy information as if he’s not interested in “playing” because he’s either far more interested in what he’s doing or thinking about at that moment (and, seemingly, he cannot be disturbed) or he likes to tease me as if I should already know the answer and doesn’t believe me when I tell him I don’t (he thinks I know everything—where did he come up with that idea??) You’ve got the power my son!!

It could get very tricky because I’d just be sitting there at this function and panicked at the sight of a woman (who looks very familiar) approaching our table damn, what’s her name. So I have two choices: either start reciting the alphabet (a name recalling technique when I’m in a jam—and not always successful) or “Pssst, Nick, help me and tell me who’s that woman coming over, her name … just her name and I’ll start, Mrssss ... ?”

“Ah, I don’t know.”
“Yes you do, tell me ...”
“Ahhhh …” (cue GREAT BIG SMIRK)
Ooooh, don’t you tease me now!!

Call it a skill. Call it a talent. Call it a remarkable memory. But please, please call it a prerequisite for a very high paying and secure job!!!

Tuesday, October 14, 2008

My Son's (Un) Just Beginnings

I’ve written about the day of my daughter’s diagnosis, so I thought it was only fitting to continue with the day of my son’s diagnosis, if you can bear it, because it was a bit different. It was just 6 months after my daughter’s autism diagnosis and one year after a speech therapist diagnosed him with PDD (Pervasive Developmental Delay) and the recommendation was: get him into a preschool program to develop his speech. Which we did by the age of 3; he was kicked out by 3.5. Oh, Boy!!!

Just shortly before his 4th birthday we had him evaluated at Children’s Hospital by a different group of doctors than we had for Meghan: pediatric pediatricians and psychologists. His diagnosis was grim, as far as I was concerned: MR (Mental Retardation).

As one can imagine, this diagnosis did not sit well with us, especially me. It was not the fact that he was diagnosed with a disorder, but PDD was what I was thinking. A much milder form of autism, but one that I could put my finger around and have it actually make sense for him. I think MR is just a label with no sense of recovery. Meaning that autism has therapies and hope, but, to me, MR sounded cold, hopeless, and hollow, like there’s nothing you can do—just love your boy, was really how we were treated. I just couldn’t understand what this diagnosis really meant, so I asked:

Me: “Does this mean that he can’t learn?”
Them: “No, of course he can learn.”
Me: “What do people with this diagnosis do for work?”
Them: “Well, a lot of ‘them’ work in wonderful places, like even here at the hospital.”
Me: “Like what, take out the trash?” (I was being sarcastic)
Them: “Yes, exactly, they mop the floor and take out the trash.” (she said, enthusiastically!)
Me: I felt physically sick “Can he learn math? Science? Reading?”
Them: “Yes.”
Me: “Algebra?”
Them: “Yes, of course.” (nervous laugh)
Me: “Then why??”

As if they had slapped me in the face and continued to punch me with every nervous word that was shaped and delivered while we sat gasping for air.

And given a box of Kleenex … but no hope.

I wasn’t giving them a hard time, I was just trying to figure it all out and, Yes, I was defensive. How can anyone label my son with no hope and a future no better than a trash man? (There’s nothing wrong with that profession, mind you, but I wanted my 4 years old to receive the benefit of the doubt and be presented with the same options that every other preschooler was given.) It was as if he was tried and convicted of a dismal future and he was only 4 years old. I wanted people to have higher expectations for him because we believed in him and this “label” just didn’t present us with any options, just a dead end and the color of gray.

Autism seemed to have hope at least, and proactive solutions: There were books and an entire therapy revolved around it (ABA), not to mention speech and language therapy; it was a process of learning and of recovery. It offered Hope.

I never went back to that hospital (as if it were their fault), and during the days following this diagnosis I told his special needs preschool teachers, speech therapist, pediatrician, friends and family what his diagnosis revealed. What I got was a pause and a “NO.” Not just a No, but a Nooo! “No, he’s not,” said every single one of them. Interesting. Our pediatrician even added, “No, he’s too smart, and I see it in the way he plays, it’s PDD, you’ll see, he’ll start to develop better language and even out,” he said.

Over the next 10 years and a few different pediatricians, lots of teachers, and one psychologist later, have all labeled Nick with a mild form of autism and we stuck with it. It makes sense for him based on what we’ve seen and how he tests; and the therapies work for him, like speech, OT, and social skills classes and have helped him develop, progress and see color, not gray.

Monday, October 13, 2008

SUVs: What's Hot, What's Not

I’ve noticed that there are a lot of Honda Pilots and Jeep Cherokees (mid-sized SUVs) on the road from what I’ve noticed—I’ve been of the lookout since my car has had its problems: 2,000 worth of work just in the last 2 months and it’s a 2004 model!!! And from what the service guy recently said to me after spending my gazillionth hour with him: "Oh, yeah, (making a face as if he just licked a lemon) 2004 wasn’t a good year for that car. "

MF!!!!!!!!!!!!!

Maybe it’s the area in which I live, but every time I go through the drive thru of my local Starbucks, I’m staring at a Honda Pilot in front of me. Or perhaps if I drive a town or two over, then I would be staring up the rear of a Cadillac Escalade as it sneers down at me like the snobby train in the Little Engine That Could. Hellooo, little engine that can't!!!

Anyway, does anyone have one of these cars? Because I swear to you that one more problem and another hour spent at Nissan service department with my car (and the lemon sucking guy), then I’m running to nearest Jeep or Honda dealer or ?

Do you love what you drive? Can you recommend your car?

Saturday, October 11, 2008

Getting Information from a Doctor (?): The Beginning of Our Journey

The Very Beginning:

When Meghan was diagnosed, we already kind of knew the results before the results were in. Meghan was not talking at all by the age of 2 and she would almost always turn a deaf ear when spoken to, and we originally thought “Deaf?” Until Barney came on the television and she shot across the house like a jackrabbit on speed to get to the TV. “Damn, she’s not deaf!” (I know, I know, how many moms wished that their kid was deaf—I just knew that it seemed better than autism.) We had read quite a bit about autism during this time and started working with her on the technique of Floortime. I remember the day as if it were just yesterday, I would be on the floor with her as she lined up her toys in a row and I, in turn, would disrupt this form of play of her perfectly placed toys and started playing with them “appropriately” while she watched. Then she would, again, try to move the toys back to her “lineup” and I would, again, play with them appropriately, smiling at her and watching … We would continue to do this for about 5 minutes until it became a game in itself, smiling and noticing that she would anticipate my next move. Ah, results.

The book is called The Child with Special Needs, by Stanley Greenspan; it helps a parent understand autism (special needs) and how to teach your autistic child through playful techniques like Floortime. It became my bible to reaching out to my daughter.

On the day of our evaluation appointment: a team of developmental doctors from Children’s Hospital in Boston, I was able to attend Meghan’s full evaluation process. I noticed that she couldn’t do some of the things that children her age should be able to do like “feeding” the baby doll instead of examining its eyes and flinging it across the room (oops). Two weeks later we were back for the results. Walking down the sterile corridor with the team of doctors leading the way as if walking to our executions, I could almost hear the drumming of doom echoing above us. We were told it was autism (as we already knew) but I still cried. Then they handed us a cheap, 3-cent, three fold pamphlet filled with more pictures of cute autistic children than information. In fact, I remember thinking that if I didn’t already know what this pamphlet was telling me about autism, then my kid was already screwed!! As an after-thought we mentioned what we were reading and learning about autism (so get a CLUE, you doctors, for Christ sake). They wrote down the information like a psychiatrist writing down the details of your psyche, a bit disconcerting and condescending, if you ask me. And then the inevitable “Good luck to you” followed with a “Thank you very much and, yes, have yourself a good day, too.”

Then off to a martini lunch! (Um, that would be me.)

The next time we saw this team for a reevaluation, some 6 months later, she was doing better … I was trying hard to suppress my nervous laugh while my body was visibly shaking as if watching my baby perform the test of her life, and watched as she fed the baby doll, among other things. I remember walking down the hall shortly after, chanting to myself: she fed the doll, she FED the doll … she stirred the imaginary food and she fed the GOD DAMN BABY DOLL! Ah, progress.

The doctors confirmed, yet again, what we had already known, that she was making progress so keep up with what we were doing: the ABA based class (that we had found), the home-based ABA program (that we enforced) and the Floortime (a book that we had researched and purchased). Oh, and before we left they kindly gave us reading suggestions: um, the books (listed verbatim) that we had mentioned to them 6 months earlier.

“Ooh,” they chuckled, as we reminded them, “I guess we can’t do anything more for you then, can we?”

We left with a queasy stomach and a bad taste in our mouth as we did our usual bid of “Good luck and have a nice day …”

Oh … and here, take back your colorful pamphlet, would hate for you to run out.”


The point of this story is to not expect a doctor to help you and your child, you need to take the bull by its horns and help your own child. You are the best advocate for him/her so learn everything that there is to know … I promise, it will be rewarding.

Note: Let me hear your voice was another book that inspired me at the start of “our” journey:
http://www.booksamillion.com/ncom/books?pid=9780449906644

The Child with Special Needs by Greenspan http://search.barnesandnoble.com/booksearch/isbnInquiry.asp?r=1&ISBN=9780201407266&ourl=The%2DChild%2Dwith%2DSpecial%2DNeeds%2FStanley%2DI%2DGreenspan

Friday, October 10, 2008

A Quiet Freedom

My son has been swimming lately. Swimming is usually something that we only do during the summer months at the beach or at our local pond. But we’ve been going to a local pool (Duxbury, MA) and watching Nick swim. I am really impressed with him. He has great speed and can endure swimming consecutive laps. I really had no clue about his endurance; it’s hard to judge in a pond when other people are around, and I won’t allow him to swim out too far in the ocean. So, needless-to-say, I was a bit nervous about him swimming through the deep end for the first time wondering if he could tread water without problems. Well, not only could he tread water very well, he also dove off the diving board—a very first. I was very impressed. I also had him try on a set of duck flippers (I have no idea what they’re called) I just know that they’re rubber and look like duck feet but much larger (Can you tell that I’m not an avid swimmer?). Once he put them on, he was off doing laps like a human duck—only better! Really, he shot across the pool like a rocket. I just had to laugh. Not a funny laugh but a proud laugh!
This weekend, mom’s getting in (um, that would be me!).

It’s just so nice to be able to spend time with Nick and enjoy doing everything with him. In the past we weren't always able to go swimming at the pool, and really haven’t (guilt, guilt) because Meghan was always so much more difficult—so much time and energy would be spent running after her and making sure that she stayed safe—we couldn’t really have a good time out, even though we suppressed that feeling as much as possible. I can honestly say that life wasn’t always as fair for Nick. During most of our outings we would have to leave early or forgo the event entirely because Meghan would have had trouble being there. I’ve worked hard for many years trying to keep this “scale of fairness” level for both my kids, but not always as successful when you really have to consider a behaviorally challenging child. One day we were on vacation and out at a restaurant enjoying ourselves immensely. We were in downtown Provincetown and dining out at an outside area of a restaurant and enjoying the scenery, the wine, the food; However, Meghan became very behavioral, very quickly. Sometimes I would get a warning—a code of mercy—ahead of time and I could tell my husband or my brother (who helped me) to take her for a walk—quickly. But in this case, it was too late. She smashed everything on the table and tried to tip the table over as well. The poor patrons of the restaurant were either so disturbed by what they had witnessed (one apparently fainted from what I was told) or they were the victim of coke soaked down their back from the sodas that used to be on our table. That moment was so surreal, as if everything was in slow motion … that’s what it’s like to have something like that happen. People, however were very kind, especially the guy with coke down his back—we offered to pay for their dinner, buy him a new shirt, etc. but he refused; so did the restaurant when we offered to pay for broken dishware—they all seemed to understand—the grace of our fellow man. My son, however, continued to eat (apparently his meal was sacrificed) and laughed … as if simply amused by his sister’s behavior. I, on the other hand, was not as amused and grabbed Meghan by the hand as we practically jumped the stonewall surrounding the patio area and booked it down the street—yeah, that’s right … getting the hell outta there was the only thing on my mind!

This is just one example of how difficult things could get if we were not prepared. I won’t even begin to tell you about the time that she (so easily) plugged up a toilet in a one-stall ladies room of another restaurant and had started the flood of deluge because she wouldn’t stop flushing the toilet. I had to call my husband on his cell phone to have him “yell fire” or anything to divert the long line that had, by then, formed (and were knocking) outside the ladies room—once cleared, we ran for the hills!! Yeah, like you wouldn’t ;)

Needless-to-say, I would be on the verge of an anxiety attack if we had dinner out again. Why I’m not a raging alcoholic is beyond me??

So things are much easier these days, I know that Meghan is very happy at her new school; she has so many teacher and helpers who work with her and provide her with many opportunities when we are not with her. So I don’t have to feel so guilty about saying that we are enjoying spending more quality time with Nick, and doing far more things (and everything for that matter) than we would/could have otherwise: like swimming in the community pool without worry, eating out without a scene, and even try skiing this winter.

A quiet freedom to relish in, but we’ve got a life to live.

Thursday, October 9, 2008

Wishful Drinking--Carrie Fisher

Has anyone seen Wishful Drinking with Carrie Fisher?

I am curious because I'm going to see it on Saturday night and just got my tickets in the mail. I was actually searching to find a kid-friendly performance/theatre to bring more "culture" to my son, but there's nothing for kids showing in Boston as of yet. So I thought I would indulge in some "sobering" fun with Carrie Fisher. I've always liked her. If anyone knows of a play for kids (teens) coming soon, let me know.

Making Adult Friends

I think I’m becoming a hermit. Yup, I think so…Let me tell you that during the years when my kids were much younger, I had stopped working and had trouble making some good friends, but I did find 4 good, compatible friends with whom I could share some time and fun dinners (or drinks) out. But, as we all know, time moves on and so did we… Ever since I moved to Plymouth (a large, very pretty town with plenty of open space) I have found it harder to make good friends. When I first moved here I had 2 or 3 girlfriends in my neighborhood to “play” with until they, too, moved away. All the new neighbors that had replaced them are not all that compatible with me—they are either younger or much older and all have much different lives.

I do know that one of the advantages of having kids is that you make friends with their friends’ parents—I see this all the time with other people, but, unfortunately, my son doesn’t attract lots of friends. And the kids’ parents in his special needs class are just not compatible with me, or so it seems. So, strike I.

Then there is the great, big problem of my not really working and not having the advantage of going into an office everyday—at least for now. If I do work, it’s freelance work and I do it from home. So, strike II.

But I will confess (even if I sound like a complete loser) that a couple of weeks ago I was working on a story in this one, picture perfect small town near me (but with a not so picture perfect price tag (steep) on homes there) and I had to interview a few other mothers and noticed that some of these women would shop together, lunch together or just happened to run into someone that they knew from their (smaller) town. I was so jealous. I wanted to say to these women (who also seemed like me—minus the special needs kids) Hey, let’s hang out? We’ll do lunch? Where do you live? I’ll move next door!! Does this mean that I’m a loser or am I a stalker???

Anyway, I got a bit desperate and have signed up for this Girlfriends CafĂ© (which is in all 50 states) http://www.girlfriendscafe.com/ it's a social network for women, so please tell me if I’m losing it and that I may need an intervention—but I’m bored!! So, this could be strike III, I’ll have to let you know!

Perhaps I need to move? How do you make new friends? Do you feel like you’ve moved to the right town, State or planet for that matter?

Wednesday, October 8, 2008

"School" in the Eyes of a Kid

My Son Hates School, Can You Tell?

One day a long time ago my son’s inventive imagination decided to declare that school was really a kid jail! And the “cool” bus driver that kids are supposed to love, especially kindergarten age—like an adventure ride through town, is nothing more than a kid catcher—not unlike a dogcatcher, just without the net—and off to the jail they go. A place that kids are roundup, formed into a line—the rule is quiet or you get no outside time, only solitary confinement. Quietly they march into the big jail and to their room—the cell, while dragging their feet as if shackles were weighing them down and holding hands as if they were in chains and hooked together. And that lunch they serve? The principal—the warden, and if you don’t do well, he will keep you in longer!

When you think about it, you realize just how valuable mom’s goodbye kiss really is.

Tuesday, October 7, 2008

Kids and The TV, Oh My!

I read a good handful of blogs and I noticed on this one particular mom blog that she and her husband do not allow their two young kids (ages 3 and 5) to watch videos or television more than one time per week. Personally, I think that this is going to an extreme. I mean it does matter what they watch—the quality of the program, but I don’t see any reason why kids can’t watch an hour of (or one) video a day. Call me a crazy mom, but I would not have survived if I didn’t plug in a movie or a musical: The Sound of Music and Mary Poppins were among the favorites of my kids during those “precious” years. Just one hour, or so, a day so that I could catch a break and a breath; then off to the parks, or to the bookstore, or on a play date, or to the video store (ha-ha).

When I was growing up my parent did not limit television watching for my siblings and me. In fact, we all had a TV in our bedrooms and it was always background sound. I don’t think it made me any less smart than I was destined to be (I think I can hold my own and have been told that I’m pretty smart) and my sister had always made the honor roll in school (show off!).

Conversely, my cousins who grew up near us were not permitted to watch television. In fact, it was taken away so they didn’t have one in their house for the longest time. How did they turn out? The verdict … please: The same. Well, actually, they are less social than my sister and I and they never made honor roll. They did not go to better colleges and they are not more successful than we are.

In fact, of all the people that I knew growing up who didn’t have television in their homes because their parents were raising “better” and “smarter” kids, I must say this: when these kids would come over to visit me at my house, all they wanted to do for fun was watch television. They couldn’t get enough, because they weren’t “getting any.” In the end, it made me less inclined to have these kids visit because it made them look like big TV junkies.

What’s funny, too, is that when my kids were 2 and 3 and were not talking (due to their autism) a few members of my “in-laws” thought it could only mean that I was probably propping my kids in front of the television all day watching Barney and the entire WGBH broadcast, for that matter. In fact, one day a particular in-law came over, an event that was as infrequent as the eclipse of the sun, walked into my house and had the nerve to close the doors to my television armoire as if telling me something … Don’t you just love it when a non-parent tries to parent. If this person had actually come over more often, then this person would have noticed that we had a jam-packed playroom and as many kid books as the bookstore itself (well, almost as many!!). And that he would have noticed that my kids were great at imaginary play (my son, especially), arts and crafts and that they both loved books! I was thinking that perhaps if this person had only graced us with his mere presence more often, then my kids would really be talking!!! Right? RIGHT? (Okay, angry in-law moment is over!)

The Verdict (in my opinion): Balance, and quality programs. My 14-year-old son does watch a couple of movies a week. He actually rents age appropriate movies from Netflix. He also watches the History channel with us on occasion, which I think it is a great learning channel. Yes, I will admit that he watches, on occasion, Cartoon Network and his newest favorite show is Two and a Half Men (sitcom), but, again, balance is key. He also does other activities: swims, jumps on his trampoline, runs track at school, and read. And we take day trips on the weekends quite a bit!

How about you? What's your opinion about kids and TV?

Monday, October 6, 2008

A Midnight Snack-- A Disorder?

I have a disorder and didn’t know it!! I have noticed lately that I have been getting up in the middle of the night and … eating. I'm not talking about the poor sleep walking people who get up to eat raw burger meat and other dreadful things like that and don’t even know it—that would be a serious problem and is. No, I am perfectly conscious and actually make the effort to get up from my warm bed and dream-filled slumber—unless, of course, I’m dreaming about a dreamy man—then food is off and sleep is back on and Mmm for that matter; but if not, I walk to the kitchen, open up the freezer or pantry and find something really fattening to eat (devour). Last night it was a Skinny Cow chocolate ice-cream sandwich; the night before was a devil dog; and “Yum” was about all I really had to say about this new problem of mine. Even though I know what I’m doing and make the conscious decision to actually get up and have a little something to eat at 1:00 in the morning.

I thought it was just me wanting to pig out at night, you know, like a closet eater: Hey, no one watch Holly devour a cupcake. Well I guess it’s considered an actual disorder in the eyes of a doctor, of course it is, called Night Eating Syndrome (NES) and it’s caused by stress and too much caffeine (that would be me—Ms. Starbucks). Isn’t it just too funny; I was actually kidding that I thought I had something wrong with me!!

Go figure. And click here to learn more: http://www.webmd.com/sleep-disorders/guide/sleep-related-eating-disorders

Adventures in Apple Picking and Photos







"The Adventures of Apple Picking Photo Album"









Nick and Meghan scurrying about picking ... rotten apples ... Literally rotten by the hail storm we recently had, so no apples


this year--but don't tell that to Meghan (upper left) she thought she got a bag full!!



Picnicking and wine sampling (drinking) was the better half of the day!


This is Nick and the view!


Saturday, October 4, 2008

The Bully Factor

I was visiting another blog and one that I like very much called Teen Autism and she talked about a topic that sent me back many years ago. It’s about bullies and that this mom has to homeschool her autistic son because of the unrelenting bullying at school. I commented that, thankfully, I don’t have that going on with my son, but I certainly had with my younger brother when we were kids. He has ADD/ADHD but we didn’t know it back then (1970s-1980s); instead it seemed to be a learning disability and a bit of quirky behavior; but he just couldn’t catch a break with his fellow peers. Some of the boys in the neighborhood would be so mean and violent, too. I remember kids would make slingshots and my brother was always the human target. Sure, they wouldn’t be mean to him while I was around, but I couldn’t always be around. They would steal his bike and toss it in the woods; throw things at him in passing; and yell and jeer at him.

One day my parents had the presence of mind to send him to a psychologist, but they weren’t happy about it. I think the school psychologist suggested it, so they thought it would be best to take him. I think that my parents wanted everything to just stay simple and be okay. Then one day I was asked (perhaps told) to be the guest visitor and speaker. On that day, the psychologist asked me about my brother and what I thought about the bullying. I was in the room with both my parents and my brother and felt like I was some specimen sitting there under a microscope being examined by all. The psychologist told me that my brother thought that he embarrassed me most of the time. How dreadful. I remember that I tried to play it cool, and that I didn’t want my emotions to show. I told him that it wasn’t a big deal to me that he was teased. I lied. But I didn’t want to tell the psychologist, my brother and my parents, for that matter, that I felt bad for him (and for me) that I had to witness kids mocking him behind his back. I didn’t want to tell them that I remembered the day that my brother rode his bike to McDonalds to get us both a burger and fries, and that he came back with barely anything left in his bag because the bullies got him. That I wanted to run to my room and cry my eyes out because this poor kid couldn’t even take a bike ride without being on some bully’s radar. Did he cry or complain? No. He just accepted it as if it were a mere fact of life. He told me, most matter-of-factly, that “they were after me and I couldn’t make it home with the full bag” of goodies.

I don’t know exactly when it ended. If the inauguration into manhood thwarted the bullies and that they had just found something better to do like “date” and “girls.” I think girls had something to do with it. In high school I had good friends and when my brother became a freshman, the rules changed. My brother became off limits in respect, perhaps, to his older sister: trust me, there were comments. But one of the most interesting days was when my brother’s number one adversary (if not the leader of the bullying pack himself) offered to walk with my brother, as a friend, the half mile from the school bus stop to home and, from what I understood, they had a nice greeting, shared some good peer conversation and ended on this high note: “By the way, tell your sister that I like her.” Who had the power now, baby!! ;)

Friday, October 3, 2008

The Details in Life

“Life isn’t about the adventure it’s about the details.” This is a quote from a book that I had just read. It caught my eye because it’s so true. The adventure is just an adventure but the little details in between is what it's really all about. The bits and pieces and elements in life is what truly moves us along. It’s the movement, physical and emotional, not the body or the mass. It’s all a ride. But the details during the ride is what it’s all about, even as small and innocuous as it may seem. It’s not the fact that we had to send Meghan to live in a residential school, but it’s the time we spend with her when we’re there. It’s the push on the tire swing and listen for the giggle. It’s the ever so quick smile breaking through just in time for the camera to catch it. It’s learning that your special needs son can actually play a pretty darn good game of scrabble. It’s the people that smile at you when you’re walking through the coffee shop. It’s the good friend that calls when you realize that you’re so lonely. It’s all about the frosting on the cupcake, but not the cupcake.

I find myself at the proverbial crossroads in life. How many times do you find yourself at one of those? I can move any which way I want. Start a new career. Make new friends. Move away. But I find myself standing still or coming back to the same crossroad. Strange. Is it that I’m afraid to make a misstep? Or am I simply lacking a detail that moves me? What will move me along? What will be the detail that makes me say, this is it, this is where I want to be and what I want to do. I don’t know. Since it’s all about the details, I seem to be empty with the details. I’m just on the adventure. Can you say midlife crisis!!!

No, I’m not drunk! I’m just being philosophical. It’s my mood.

Thursday, October 2, 2008

New England Foliage and Apple Picking

Love fall in New England. I know, I know, the folks from the south (namely some in our family) just love to laugh at our poor New England butts for having to deal with our brutal, winter weather. But laugh not, because we also have some of the best fall foliage and apple picking known to man. So move over palm trees and orange groves, it’s our time to shine!!

Love to go apple picking and enjoy the fall foliage. Of the many places to do both, one of my favorites is the Nashoba Valley Winery located in Bolton Mass.—and not too far to travel from where I live.

From their expansive orchard you can pick a bushel of your favorite apple or you can pick a peck of peaches and plums, too.

Then after you pick, pick, pick your fruit you can go into their winery and sample some fine wine. They have quite an array of wine, full and half bottles, too. Last year we bought a half bottle of a raspberry wine, which they opened for us, and we purchased some crackers and cheese that they also offer and we sat outside in the warm sun and enjoyed the foliage. Some people bring a picnic with them and just purchase the wine—very romantic and fun!

There is also a restaurant next to the winery that is rustic and sounds just delectable. We have never had lunch or dinner there because it requires a reservation. So this Sunday we will grab my parents and stuff them in our car, steal Meghan away from her school and head up to the Winery to apple pick (galore) and have brunch. Yummy! This will also be our first real outing with Meghan since she entered her school.

For those in the New England area, or thinking of visiting soon, here is the link to the winery: http://www.nashobawinery.com/


If you go, let me know!! Or if you have your own favorite place, let us all know!!

Wednesday, October 1, 2008

“The Moment Right Before” Poem

This was one of my first poems and it is about my many trips to the park with my kids. Autism, more than 10 years ago, was one of those disorders few people really knew anything about; it wasn't as prevalent and talked about as it is now. From first appearances my kids looked like every other kid until they got a closer view of my daughter (who has severe autism) and then ...


“The Moment Right Before”

It’s the moment right before
And after I see them coming
With their big, white smiles flashing my way
And I get that feeling—ache, that’s hard to describe
And it starts with the pleasant conversation:
The trees, the weather, the park.

It’s the moment right before
And it’s a feeling I like to flirt with
For at least a moment or two
But I feel I have not right—like a minority or a hidden plague
But it feels so nice and feels so natural
The way it is meant to be.

It’s the moment right before
I can predict when to tell them
Before they realize on their own
That she’s a little different—a bit off
And save us all from their little excuses
To travel to the other end of the park.

It’s the moment right before
They can become so bold
And redirect their child from mine
By quickly brushing them away
Like a broom sweeping
As if I wouldn’t notice.

It’s the moment right before
A potential friendship dies before it can start.
It’s sad to feel this way, but also learned
From others park moms who don’t understand
About autism. Because she looks just fine—normal
As if my own reflection smiling back at me.

It’s the moment right before
People are drawn to us—like magnets
And I want to repel, before they do
Play the role that I’m the snob
And have no interest in YOU
But I do; boy, do I do.

It’s the moment right before
The color is drained from my face
As if I’ve been murdered and left for dead
To stand motionless
Like rigor mortis
And silent, too.

It the moment right before
It all seems so heartless
But it’s real and today
In a world left too busy
With no time for difficult friends
So I do understand.

It’s the moment right before
They’ll need a quick fix
And a compatible one, too,
But it still hurts
Because there are no quick fixes here
Just the moment right before.