January 2013
1 post
A Break
It’s 2AM and I am writing instead of sleeping. No surprise there - the swirl in my head never ceases and sleep is a luxury I seldom attain these days. So I sit in the kitchen putting some of that swirl on paper as I look out at the pristine snow in the backyard.
Tonight sleep eludes me because I received an e-mail home from Will’s teacher. She wrote that he had a tough day today,...
December 2012
1 post
When They Ask Why
I can honestly say that I have been hiding again – avoiding my writing for whatever reason. This time of year always brings a bit of frenzy as we try to prepare for the holidays and keep the kids in check, so to speak.
When I first put the boys on the bus for kindergarten back in August, it was with a great deal of anxiety. There were so many things about which I worried – would they make...
October 2012
2 posts
The Gift of Sight Words
I am often envious of my creative, artistic friends – the ones that can draw, the ones who are so visual and can see it before it hits the paper. My artistic ability is limited, hence I became a scientist. My ability to ‘visualize’ is equally frustrating to others as it is to me. My husband will attest to this as we debate how to remodel our kitchen. “I can’t see it, “ I tell him.
Writing, on...
Enjoying The Noise
I love this picture. I often look back at pictures of when the boys were little - sometimes to laugh, sometimes to reflect, sometimes to investigate. I look at these pictures and often wonder if there were signs that I missed. Not a good practice, I know, but I can’t help myself. Like that red, eczema-looking rash on his cheeks - signs of a dairy allergy? I wish I had known...
September 2012
6 posts
In A Moment...
I was getting ready to write – it’s Friday and I need to post something. I went to check my e-mail, looking for a coupon (of all things). I want to buy this dress and thought I had a coupon in my inbox. There was an e-mail from an old, dear friend from high school. I was so excited to hear from her – wondering what she had been up to lately. The e-mail was actually from her sister. It turns...
The iPad Speaks
You already know I am such a fan of this thing – it has changed the shape of so many lives. I believe it has helped foster Will’s new love of reading and writing. I was blown away at Meet the Teacher Night when I discovered their kindergarten classrooms have 5 computers and the school has a slew of iPads that the teachers can sign out and use with the kids. I’ve already downloaded Storia for...
Thank You, Bill Clinton!
I try never to expose my political or religious beliefs to the general public. There are a select few who know exactly where I stand on certain things and the rules by which I live. I generally fall in the middle somewhere – I’m either a really liberal republican or a very conservative democrat. Most days I am just like the rest of you – a working mom trying to do right by my family, attempting...
The Diet →
Read about autism and the diet and check out all the cool stuff available for kids.
Patriot Day
The boys started kindergarten last week. Lots of transitions in our house, with all the joy and angst that goes with them. Today the boys were encouraged to wear red, white and blue in honor of Patriot Day (National Day of Service and Remembrance). James asked me why it was Patriot Day and what it meant. Hmmm? How do you explain that to a five-year old without scaring the crap out of him? In...
Starting Kindergarten
To me, summer is like an endless string of best days all tied together. It’s about long afternoons at the pool, running around barefoot until well after dark, eating ice cream early in the morning and working really hard at getting your skin the perfect golden-brown color (with sunscreen, of course!).
I tried to ease up this summer. Some of you who know me really well are laughing – so not me,...
July 2012
6 posts
Inspiration and T-Shirts
It’s late and I should be in bed, asleep. I know I will regret this tomorrow when the alarm goes off at 4:11am and I have to get up to run (training for that marathon). Inspiration hits me at the darndest times though, and I like to put it down before it leaves.
I have an enormous collection of T-shirts. It started with my first U2 concert at the age of 13 and hasn’t stopped since then -...
Parenting, People and What Makes Me Mad
The boys have been begging me (pleading, actually) to take them to see the new Batman movie. They are obsessed, like most five-year-olds, with all things super-hero. I’m glad I said no – far too violent and dark for five-year-olds. In the wake of last Friday’s shooting, I’m even gladder now.
My sister used to say that parenting is really just 98% survival. How true when you’re a parent of...
Run With Will
I have decided to run a half-marathon. You already know that I am a fitness nut – and you know that I am slightly crazy. One thing I am not is a runner. However, I desperately want to put one of those runner girl magnets on my car. So my friend Kim and I have made a pact that we will run 13 miles come the third week of October. The idea originated from thoughts that we needed to amp up our...
Things I've Read This Week →
Read what I’ve read - and find other stuff - over at Fun and Function!
Celebration & the Beach
Every year our family spends Fourth of July week at the beach in Ocean City, New Jersey. I have been going there during that week since I was a child. I brought the tradition over to my family even before my husband and I got married. Fourth of July is my favorite holiday and OCNJ is probably my favorite place on the planet.
Vacations can be stressful for families of kids with special needs. ...
Falling Down
My good friend Sasha recently went through a significant diagnosis with her child. Sasha is one of the strongest people I know, but even she struggled with the overwhelming idea that her child might not be ‘normal.’ Through tears and laughter and a lot of in-between, I helped her work through the process and the decisions.
It is no easy task, being the parent of a special-needs child. While...
June 2012
2 posts
Do You Say Something? →
Check out the new blog post for my friends over at Fun and Function - and check out their great stuff for special-needs kids!
The Baseball Village
I have been extremely remiss about writing again. It seems this time of year always does me in – birthdays, death anniversaries, IEPs. I have a million excuses as to why nothing has been put to paper. The fact remains that I can make a million excuses but only one truth exists. When I don’t write, one thing is for certain – I am hiding from my feelings. I own that and I acknowledge that and...
April 2012
8 posts
Paperwork Revisited
Last night I had dinner with the coolest of chronicbabes – Jenni Prokopy. I love hearing her perspective on so many things, especially from the patient point of view. Her advocacy and outspokenness make me proud to be a patient.
We discussed technology and social media in healthcare at great length – she uses her iPad to take notes during meetings and seminars. She explained that she started...
Speech Therapy
I recently had a conversation with Will’s speech therapist. She called to let me know that she was ‘dismissing’ Will from speech therapy. “Did he get kicked out?” I wondered. I’m joking of course (oh crap, there it is again) but I approach the idea of him being dismissed from any therapy with trepidation. I know all of you autism-parents out there know what I am talking about.
“I’ve heard him...
Working Moms →
Visit my friends over at funandfunction.com and read my new blog post.
Author For Autism
Contact: The Autism Society of America
Phone: 1(800) 328-8476
Contact: Nick Shamhart
Email: authorforautism@yahoo.com
AUTHOR TO DONATE ALL OF APRIL’S SALES TO AUTISM SOCIETY
April is Autism Awareness Month and Nick Shamhart – Author and Father of an Autistic Child – Plans to Contribute
In hard economic times one of the first places people...
iPad Update
I agonized for weeks on the iPad purchases for Christmas and also asked myself why I would buy a $500 piece of technology for a four-year-old x 2. I think this article says it all and helps me feel better about my decision.
The author doesn’t even touch on what it does for kids with special needs – Will’s technology skills have easily quadrupled since he got his iPad. Previously, he was...
In My Head
My good friend Phil recently told me about a conversation he had with his 12-year-old nephew. Phil’s nephew has high-functioning Asperger’s. The conversation started because Phil was trying to explain how the Christmas Pollyanna among the cousins would work. His nephew was upset because he wanted to choose the person for whom he would by the gift. Phil told me how exhausted he was at the end...
Life As A Checklist
I love this picture of Will. My friend, Lindsay, took it at an event recently. I think it captures his personality perfectly. Lindsay is really good at that.
We were at the local St. Patrick’s Day parade with some friends. The boys had a ball running around, playing with the other kids and eating lots of green foods. It was one of those moments where I actually forgot for 10 seconds that my...
1 in 88
One in eighty-eight
That’s the new number
The one the experts say
Makes everybody wonder
It is way too high
Far too many
For those of us who wish
There weren’t any
No more kids who have to fight
To struggle through the day
Who want to find the words
And make it go away
This new number
No, it is not a surprise
For those of us who every day
Look into their eyes
My son is one of those
The one in...
March 2012
3 posts
Paperwork →
Click here to read my new blog post for my friends over at Fun and Function and check out all their cool stuff for our kids!
The Crying Game
Lately, Will has been prone to some emotional outbursts – fits of uncontrolled crying in response to relatively small events. At least they seem like small events in my mind. For example, last evening he cried when I asked him to come upstairs for a bath. It was the third or fourth time I called to him, so I used my ‘stern’ voice to get him to move. I wasn’t exactly expecting that...
The Cool Things About Autism...
I never thought I’d say those words - or write them I suppose. Sometimes it really feels like there is nothing cool about it and that this really sucks. Very often it is just about surviving the moment or the day. But occasionally, there are some things that just turn out to be really cool. So these are those things that are cool about my life and child with autism.
The first thing that is...
February 2012
3 posts
To Tell Or Not To Tell...
Visit my friends over at funandfunction.com - check out their way cool stuff for special needs kids and read my new blog post - http://funandfunction.com/blog/general-interest/to-tell-or-not-to-tell/
Valentine's Day Fail...
My husband and I generally don’t make a big deal out of Valentine’s Day - our anniversary is early in the month and my birthday is later, so this particular holiday gets lost in the shuffle. It is, however, a big deal for the boys at school and a much-anticipated pizza party is taking place today at lunchtime.
I guess I was more worried about prepping Will for his appointment with...
Asking For Help...
I could hear them clearly and perfectly. I rolled over to look at the clock – 3:11am. Why were they up? Why must I be forced out of bed at this hour?
I staggered down the hall and into James’ room. Will was standing on the other side of the bed, attempting to climb in with his brother.
“It’s too early,” I told them. “Why are you up?” I am not sure if I was expecting a logical explanation...
January 2012
1 post
Apologies, Regrets and Resolutions
I’ve been told I apologize a lot. I’ve also been told it’s a sign of weakness. Whether it’s weakness or not, I know exactly why I do it and from where it comes. I’m sure there are a slew of psychology-types out there who could have a field day in my head right now.
That, however, is not the point of this post. It is resolution time (ok, I’m a bit late, I know) and it is time for me to throw...
December 2011
3 posts
Losing The Battle and The War
When Will was diagnosed over two years ago, I swore I would beat this. I have always been one to smirk in the face of adversity. Rheumatoid arthritis? Bring it! Infertility? My twin boys are a testament to that battle.
Funny how autism doesn’t quite work like those others – it never goes away. It is not a battle, but a war fought long and hard. Early on I would have called myself an...
My Brother's Keeper
The other night I lie in bed with James, singing his usual goodnight songs and rubbing his back so he would fall asleep. I am continuously amazed by both my children, often in very different ways. James is very insightful into others feelings and is very perceptive when it comes to the world around him.
I began to tell him how proud I was of him, how he was growing up to be really smart and...
Little Rewards
I suppose that I should be worried that James knows all the words to ‘Moves Like Jagger’ by Maroon 5 and that Will knows all the words to ‘Take It Off’ by Ke$ha. At 4 & ½, I am impressed at their memory and musical inclination, yet worried that I’ve scarred them for life.
I’ve started a small rewards system for the boys, tied into bigger rewards. We’ve been trying to streamline our morning...
November 2011
3 posts
What I'm Thankful For...
Today I am grumpy – it is one of those days tagged onto one of those weeks at that time of year. I am forcing myself to write this so I can stop being grumpy and start appreciating a little more. So here is the very lengthy list of all that I am thankful for this year.
I am going to start with the very basics. In this terrible economy and truly tough times for many, I am eternally grateful for...
iPads For Christmas?
I’ve been having this great debate about ordering iPads for the boys for Christmas. Granted, the debate is only with myself and is only taking place in my head, but it is still a great debate. It seems a tiny bit ridiculous that I should be contemplating such an expensive gift for 4 & ½ year olds, ridiculous on many levels. After all, what will they expect when they are 16? Knowing their...
The Hero in Us All
A friend passed a comment to me a few weeks back: “That which doesn’t kill us only makes us stronger.” I responded back in short that I was either “really strong or mostly dead” and couldn’t really tell which one these days. I was being sarcastic, which I know comes as a complete surprise.
It’s been a rough go lately, I’ll admit. My mom has been sick, in and out of the hospital several times. ...
October 2011
3 posts
When I'm Gone...
Ever taken a four-year old to the grocery store? How about four-year old twins? How about your four-year old with autism? No, I don’t think I’m special, but I do have my challenges. Let’s look at it this way: I hate going to the grocery store; taking kids to the grocery store is never fun; taking a child with autism to the grocery store multiplies all of it by 10!
I always joke that my trips...
Loud and Inked Up
I recently attended a fundraiser where I had the opportunity to meet and hang out with some new people. I will openly admit that I am not much of a ‘girlie-girl’ and often prefer conversations around cars, beer and football to that of shoes and book club. Don’t get me wrong, I love to shop and there is almost nothing better than a good mani-pedi. It’s just that these are not my areas of...
Is Autism Like Cancer?
I am afraid the title might offend some of my autism-mom friends. More importantly, it might really offend some of my cancer patient friends. In light of the passing of one of the worlds’ greatest technology icons (who also happened to truly impact the world of autistic patients), I felt it important to address the topic today. It’s been rolling around in my head for a few weeks.
My BFF, Jen,...
September 2011
1 post
#SXSH - My Many Perspectives
Early last week, I had the opportunity to attend the Social Health Summit in Philadelphia. I am a relative newbie in this arena and was looking forward to the opportunity to expand my horizons a bit. As my friend Russ, pointed out, I had somewhat of a unique vantage point for the conference: I am a health care professional, a patient with a chronic illness, a caregiver for a patient with a...
August 2011
1 post
Teachers
I have been remiss about writing again. The summer seems to have gotten away from me. How is it that we lose all sense of time and structure during the warm season? That can be tough for a child with autism. Will has done really well this summer, despite our complete lack of schedule, structure and dietary restrictions. I’m probably a terrible mom for saying this, but I needed a little break...
July 2011
1 post
The Dentist
Today started with our 6-month check-up at the dentist’s office. Any parent of a child with autism will probably tell you that visits to the dentist are the very worst. I am unfortunately no different
.
This is our second dentist for Will. The first one was good, but he only had very limited hours when he would see special needs kids and his office policies were utterly ridiculous. Hence, a...
June 2011
2 posts
Autism & Marriage
A friend once told me that 85% of marriages where the parents have an autistic child end in divorce. She also has a son that has autism. She is divorced. I have never validated that statistic, but it feels accurate to me.
When Will was diagnosed, I threw myself into making him better, getting him everything he could possibly need. I was looking for a cause at that point in my life, always...
The Walk
I have been remiss about writing. Even now as a sit in front of my laptop, I conveniently look for distractions. My life has taken another crazy turn, it seems.
My father-in-law passed away two weeks ago. I was closer to him than many realize. In a time filled with significant stress, when my now- husband and I first started dating, his father accepted me as one of the family and welcomed me...
May 2011
1 post
Dirty Feet
On Saturday evening, a bunch of neighbors ended up congregating in my driveway. It always starts with me taking the boys out to play and pouring a glass of wine. I call Jen and she comes out with her girls, so I pour her a glass. Eventually, Tina makes her way out with her husband and kids. These random ‘driveway parties’ are so much fun in the summer and my favorite part of living in this...
April 2011
7 posts
The Check-Up
On Tuesday, we took Will to see his developmental pediatrician. He goes every 6 months for a ‘check-up’ and to map his progress. Honestly, it’s more of a formality than anything. More documentation for me to accumulate, just in case. I like her, don’t get me wrong. She just never really tells me anything I don’t already know.
She put him developmentally at age 3 and was very pleased with his...
Other People
I’m not sure I would have been as nice if it had been me in this situation. Kary, I give you a ton of credit. It definitely would have been a spot where my Irish temper met up with my lovely sarcasm and they started wreaking havoc around the place. That woman would have left with her cane in two pieces!
Having a child with autism has given me a lot more patience and the strength to be way more...
