Lex and the "Pushbutton"

After watching the 60 Minutes segment last night on "Apps for Autism", I realized how happy I am for the invention of the touchscreen iPod/iPhone/iPad suite of products and what a difference it has made to the Autism community as a whole.

The story about the young man with autism using the iPad to use PECS (Picture Exchange Communication System) to communicate when he used to be non verbal touched me dramatically. Lex's second form of communication (first was sign language) was using the PECS pictures. His therapists who came to daycare, twenty hours a week from the age of two to three, laminated approximately 50-70 different pictures and velcro'd them in a book to make him communicate his wants and needs and he took to it like a fish to water. It made us realize that he knew a lot more than we actually thought he did. It was the first time he was able to tell us specifically what he needed (such as a specific food or drink or what he wanted to play with).

Watching the segment, the thing that caught my attention and hit home the most was the focus on the inability of autistic children and adults to look people in the eyes when communicating with them. This is one of Lex's main issues that I try very hard to work with him on. With the use of the iPhone, Lex and I use the FaceTime program to video chat with my parents every other day. When we started using the phone for this about ten months ago, Lex would never look at the phone. While he still isn't looking at them 100%, he is much less distracted now and will occasionally make eye contact. He will always do so though if he knows that they are watching him perform a task, such as pouring water over his head in the bathtub which makes them laugh, and will always watch for their reaction.

The comments that the therapists and parents made on the segment about how autistic children had the vocabulary but just couldn't share it also rang true. The use of the iPad to help bring out that knowledge was eye opening for some that watched the program that I talked to. At school, Lex gets 9-12 new vocabulary words a week, along with a picture to associate with the written word. At the end of the school year last year, I decided to test Lex on all of his vocabulary words, which were over 350 words. Not only did he know every one of them, he could use them in associated manners, such as "The helicopter flies in the sky" and "the bus drives in the road". This from a kid who at two years old could say 7 words. Seven.

The use of iPads for school children was also focused on, and there was a bit of discussion on the difference between the kids being fascinated by the technology and actually learning to communicate. Personally, I think that if the children are showing enthusiasm and a tendency to work more if using the iPads, then it is totally worth the investment. I hope that more programs embrace the implementing of technology in the classroom and that more non-profits start donating iPads to schools because we all know that there is a big issue with budget, even for special needs programs.

Two years ago, I won a charity auction for a iPod touch, thinking how I'd love to have this cool new technology. Little did I know that a month after I brought it home, my son would commandeer it. From the minute he got his hands on it, he was obsessed. I realized quickly not only did he teach himself how to open the apps, but also how to get back to the home screen and flip back and forth between pages. I quickly searched for educational apps for him and loaded them up for him. Then I just sat back and watched in amazement. The kid just taught himself everything. To this day, I have never taught him how to use one app on the iPod. From tangrams to Angry Birds to Flash Cards to Piano Teacher....he's mastered them all (including Angry Birds, he kicks my ass). For fun, he watches educational videos on YouTube, using the "Favorites" category to mark his Thomas the Tank Engine sing a longs and random Japanese Sesame Street dubbed episodes (don't ask me how he finds them, but they make him laugh hysterically and he loves watching it).

So whenever you hear me joke about Lex asking for the "pushbutton", now you might understand a bit better about the benefits these types of technology can have for kids and adults like him. Any way to make communication happen is a wonderful thing for these people who previously were "lost" to the world. Donate to your schools if you can. Find out if they have iPads and if they do, donate an iTunes gift card because "Apps for Autism" aren't cheap. The PECS app alone is $185.

As always, thanks for reading.

Focusing on the Positive

No, I'm not going to rehash the last 24 hours. It's not worth it. Instead, I'm going to write about the outpouring of love and support I have received from family and friends.

Believe it or not, I always had trouble making close friends. I have two girlfriends that I grew up with that to this day I still consider my best friends. My church friends that I grew up with are also extremely important to me, even though I don't get to see them very often. I have my college friends, and my extended college friends known as my Worcester friends. I don't have many friends at work, save for a few, including one who I call my best friend I never see. And now I have the group that I call my "Twitter" friends, even though the majority of them I now actually KNOW in real life.

And then there is my family, which includes my immediate family, my extended family and my "not really" family, which includes people who have known me since I was born. Most of us are Greek. This means we are in each others business all the time. And that's the way it is and we all love it.

I have NEVER, EVER experienced a level of friendship and love than I have in the last few months. First, after a post I wrote in honor of Autism Awareness month, regarding my journey with my son. The second, was after a second blog post about a rough weekend I had. The last, and most touching, was after a personal attack.

Between Twitter, text messages and Facebook, I have seen the love that people have for Lex and I. From comments about how I'm a great mom to how people know that Lex is a wonderful little boy. I've been through a lot the past few years. I had some highs and lows. And boy, did I have my lows. But things are finally coming around. And I don't care what anyone else says, I could not have done it without support. Support from all of you.

I hope you know that I appreciate everything that you have done for me. It may have been something as simple as introduce me to geeky TV shows that you know I'd love, or telling me I'll never spend a birthday alone again. It could have been telling me that you won't feel bad for me because you know that there is nothing wrong with my son. It was you inviting me to a concert or a baseball game. Including me in your plans with other people. Taking a chance on a new friend. Having your son tell me that he thinks of Lex as a little brother. Asking about your godson. Telling me that you are proud of how good a mother I am. Sending me info about the newest Autism research, products and ideas for helping Lex. Donating to Autism causes in Lex's name or just supporting Autism research in general. Telling me that you are so glad we became friends. Letting me know every day how much you love me. And Lex.

This is only a short list. There is so much more. But I'll run out of room if I put it all down.

With all the negative in the last week, I decided that it was a waste of my time to dwell on it anymore. Negativity breeds negativity. I'm done with that. I'm focusing on the positive. And that positive is all of you. Thank you.

It's your loss. Not ours.

Not once.

Not twice.

But three times in two days.

That's how many times someone said something hurtful about Lex without being aware of who Lex is.

The first incident pretty much killed any fun I might have had at my home church's Greek festival this weekend. Lex was absolutely loving the rides at the festival. My kid has no fear. He went on anything he was tall enough to ride and was upset at those he wasn't allowed to go on. On one of the rides, a simple merry go round of cars and motorcycles, Lex chose to ride a cool bike. The operator of the ride came over and told him "No standing up and no dragging your feet." I quickly tried to reiterate these facts to Lex, knowing he may not have been paying attention. The ride started and Lex was loving it. In his excitement, he stood up, still tethered on, only 3 inches off the seat. I saw this and immediately yelled at him to sit down. I then walked over to the operator to tell him that Lex is autistic and may not understand the instructions, in order to make the operator understand that Lex wasn't purposely disobeying his request. I understand that Lex didn't follow the rules, but what happened next blew my mind. The operator said with obvious disdain "That's no excuse."

The second incident happened this morning in Ikea, which for some reason is Lex's absolute favorite store. I think it's because of the bright colors and open floor plan that welcomes trying out all the furniture. We were walking around the marketplace, so instead of running around, Lex was in the cart. Lex saw an elevator and wanted to go up it. I explained to him that there was a yellow tape across it which meant it was broken. In his little boy "my mommy can fix everything" voice, he said "So fix it!" I tried explaining that I couldn't and he got upset and started to have a meltdown. While I was trying to calm him down and explain, there was a couple behind me who were talking to each other in Greek. From the phrases I was able to interpret, I made out some not so nice things they were saying about Lex and myself. There is only one way to interpret "bad child". And the tone that everything was said in was absolutely like you would expect when badmouthing someone, but thinking they have no idea what you are saying. When I had finally had enough, I turned around, looked them square in the eye and said "Signomi?!" which in Greek means "excuse me". They were completely flustered and stalked off in the opposite direction.

The last episode happened tonight at dinner. This is my last day with Lex for a few days, as I'm off on a business trip tomorrow to Montreal, so I took him out to eat. We went to our favorite local restaurant where the waitresses all know us by face and name. Lex and I sat down, we talked about what we were going to eat, and we were both in good spirits. After we ordered and got our drinks, he asked me for the "push button" which is what he calls my iPod. I eagerly gave it to him, as I know that can keep him quiet and happy. I have it loaded with educational games, some fun Sesame Street videos and of course, lots of Thomas the Tank Engine episodes. At the table across from us, I hear a woman sitting with her husband comment about how I gave my son "some game to shut him up so I wouldn't have to deal with him." She went on to talk about me and my apparently appalling parenting skills. She also commented on how I was trying to get the Yankees game on the tv (the waitress gave me the remote because she knew I wanted to watch). At this point, I swear, I just about had it. I was ready to stand up and just start yelling. But believe it or not, I used Twitter as my outlet and cooler heads prevailed. Our food came and Lex ate like a champ, which doesn't always happen.

But this time, revenge was sweet. Another waitress came over, one of the owner's daughters, and said to me "I can't believe how big he is! And what a good boy he has been tonight! Way to eat all your food, Lex!!" I turned and looked DIRECTLY at the ignorant woman and said "Yeah, for an autistic kid, he's pretty awesome." I swear, her jaw dropped to the floor at my brazenly directed comment to her. Not 5 minutes later, she asked for the check and they were out the door, with half their food still on their plates.

So why did I write this, other than obviously needing to get it off my chest?

It's all about awareness, people.

My brother had some bracelets made and gave me one last night. It's a simple white bracelet. On the outside it says "Autism Awareness" and "Hope". On the inside, it has my son's name. Just be aware. Think before you comment on someone else's child. You may not know the whole story. And chances are, that other person heard you. If I was a weaker person, this could have sent me into hysterics. But the sad part is, it happens all the time. But don't be fooled, I hurt. Sometimes worse than I may let on. But that's why I don't hide my son's diagnosis. I try to educate where I can.

And as I tweeted my final words on Twitter on the subject, I will copy them here:

"It comes down to this. My kid is awesome in his own way. If you don't get to experience that, it's your loss. Not ours."

(A special thank you to those of you who supported me through these incidents. Your support meant more than you may know.)

7 words

"7 words."

This was my answer when the pediatrician asked me at Lex's 2 year old check up how many words he knew. He then proceeded to tell me that he should have 200 words. I had no idea there was any issue, as Lex is a happy kid, and never really complained. So this prompted more questions and concerns. After a few consultations with experts, a conclusion was reached.

My son has a severe speech delay and is mildly autistic.

And I thank God every day that this conclusion was reached.

Because of the diagnosis, my son is eligible for special education services from the State. Being under the age of three at the time of diagnosis allowed him to receive 20 hours of speech therapy at daycare a week. And the State covered most of the cost. His diagnosis also granted him the opportunity to attend school the DAY he turned three years old. And not just a few hours a week. He takes the "big bus" with his friends from daycare and attends almost an entire day. He gets half a day of inclusion with "typical" children and other special needs kids in a preschool classroom and half a day of one on one speech and other types of therapy.

Where he lays on the spectrum, I'm not positive, as everything seems to improve as his speech improves. I am blessed to have a family that supports and accepts him, as well as many friends and loved ones who love him like I do. My parents and brother attend Autism fundraising events in NY whenever they can. My son's father and I volunteer for different events around us. I have a girlfriend with a son also on the Spectrum who always lets me know about anything new that she learns that her son responds well to. I have family members that also have children on the Spectrum who helped me through the initial diagnosis by answering all my questions and offering non-judgemental advice.

Life isn't always roses with a child on the Spectrum. Tantrums can come quickly, but I have learned how to deal with them (a lollipop can always staunch the crying). He doesn't do well in crowds. A visit to church on Palm Sunday turned into a disaster when a visiting priest didn't understand Lex's discomfort and chastised me for not being able to "control my son".

Pity angers me. My son is autistic. I can say this with no issue. Don't feel bad for me. I accept and embrace it. Don't treat him like a leper. He is a 4 year old boy who just wants to be a kid. While he may not be able to tell you exactly what you want to hear, he can show you. Although these days, the words are coming quicker and more often, which is amazing to see.

I have seen both the negative and positive sides of having a child diagnosed as on the Autism Spectrum.

On one hand, there have been people who have been afraid of this diagnosis, who feel bad for me, who tell me they are sorry, who pity me. To be honest, I feel bad for these people because they tend to shy away from inviting my son and I to their house or invite us to events. They are the ones missing out on Lex's infectious giggles and loving nature. They miss out on his quick bonding with people and his boundless energy. They miss out on his absolute love for all things "Thomas the Tank Engine" and his ability to tell you the names of over 50 trains. It saddens me to think about the friends I have lost because they are not aware of the broadness and intricacies of Autism. It angers me when I think about comments made to me that were meant to be supportive, but were just hurtful. I tried to not take it personally, but I failed. Miserably. I lost many friends who didn't know how to handle my son's diagnosis.

But on the other hand, I have other friends who have not let Lex's diagnosis get in the way of them getting to know him. One of my favorite things I've ever done with my son is taking him to a indoor waterpark resort with my girlfriend Megan and her son, Jack. I have NEVER seen my son get so excited to do something with someone other than me or his father, but "Waterpark Jack" was his best friend for those two days. And at the end of the trip, Jack melted my heart when he said "Lex is a good kid". Those five simple words mean more than he will ever know.

Society is becoming more aware of the abilities and disabilities of people on the Autism Spectrum. I applaud those businesses and organizations that recognize that Autism is a disability. One most forefront in my mind is the Disney Corporation. Before our trip to DisneyWorld this Christmas, I emailed the website asking if they would be able to do anything for my son at the parks, as he does not do well with waiting in lines patiently and quickly becomes frustrated and agitated. They replied by telling me to visit the Customer Assistance office in whatever park we went to first. I did this, and they were happy to offer me a Guest Assistance pass, which allowed us to wait a minimum amount of time on any ride that he wanted to go on, not just for that one day, but for our entire trip. This entitled my son the opportunity to actually enjoy his trip, not have it filled with frustration and angst at the hour long lines. We had a magical trip and my son still talks about wanting to go back on Splash Mountain at least once a week.

Who knows what the future will hold for my son or for Autism as a whole. All I can ask is for one thing. Let my kid be a kid. Don't let his diagnosis change how you look at him. If there is one thing I know for sure, and it is his favorite phrase, my kid loves his mom. And I love him. Autism and all.

"You talkin' to me?!"

First off, a disclaimer: I am writing this during the Yankees/Red Sox game so if there are any curses or cheers thrown in, you understand why...

I recently had a friend tell me that they were going to change the way they conversed on Twitter because of the complaints and unwelcome criticism. I had someone tell me two days ago that I should never curse on Twitter or Facebook. Today, I was indirectly made fun of for cheering for the Yankees in my own way.

Did I miss something? When did it become ok to tell people how to express themselves and how to use their free speech?

I understand that I am a mother and a friend and a daughter and a girlfriend. I understand that my "online" persona is created and molded by the comments I make, pictures I post and conversations I have. I understand that the friends that I keep closest to me make me seem like I'm in a "clique". I understand that people do not agree with everything I have to say and I do not agree with everything I read. I understand that as a trained engineer, my writing skills are horrendous.

And yet, I will change nothing. I will continue to express my opinions, my feelings and my convictions as I see fit. I will continue to curse, make fun of myself and profess my undying love for my friends and family. I will not allow comments that others make about me affect my crazy, disconnected, sometimes geeky thought process.

Why will I continue doing what I do? Because I'm me. If I changed, I'd be doing it for the wrong reasons. No one should change anything about themselves for any reason other than that they are doing it for themselves (and if you disagree with this, that's your right!).

The bottom line is this: I ain't changing shit. Y

ou don't like it? Guess what!?! You have free will! Stop reading my tweets, my blog posts, and my Facebook updates. Chances are...I won't miss you.

Off-season Depression? What's that?!

Every year, starting in late October or early November, a few things happen: it starts to get cold, work starts to get crazy, my blood pressure starts to come back down to normal levels and baseball is over for the season. About 10 years ago, I termed this my "off-season depression". I would count down the days until Pitchers & Catchers reported, pining on any news outlet I could to find some information that related to baseball. This year...not so much.

I spoke in a previous post about the profound difference that I noticed in spending a season with my new Twitter friends. Some had told me that the off-season won't be as boring, but I pooh-pooh'ed that, knowing how insanely bored I get during the winter.

Yeah, I love being wrong.

I had a great offseason. From Thanksgiving Eve dinner (in which someone thinks my mom tried to poison her), to Rangers/Islanders games, there was always something to do and someone to see. More Atlantic City debauchery with the girls and waterpark/aquarium trip with a great friend and our sons. Tweeting my drink order to my favorite bartender and subsequently getting in trouble for it. An early Christmas romantic getaway to a familiar place but a surprisingly new and fantastic B&B. Christmas in DisneyWorld with my son and my parents. Even a "business" trip to NYC which included drinks with my brother and friends, fun french fondue, and a fantastic once-in-a-lifetime foodie-indulgent early Valentine's Day dinner.

It wasn't all fun and games though. A bad car wreck for me which led to "new" car shopping. A crazy snowy winter with over 48 inches of snow in two weeks, including snow causing my brother to not be able to join the rest of us in Florida at Christmas. The loss of a Twitter friend who was so young. Family illnesses and my brother's recent surgery.

But it's not over yet.

Still to come is the best yet. People sending me pictures from FL of my favorite current and former Yankees players that make me swoon. My first invitation to the "boys only" Spring Training trip that my dad and brother take every year, and convincing my girlfriend to come with me. A massive gathering to celebrate the birthday of the Yankees Fan who was taken from everyone who loved him way too early. An invitation to join friends at the Celebrity Chef Tour Dinner supporting the James Beard Foundation being hosted this year at Yankees Stadium with one of my favorite Top Chef personalities.

Not to mention plans for the season, including a Chicago baseball trip to celebrate birthdays and an anniversary, going to see NKOTB at Fenway, a probably unforgettable trip to India, and a promise to my son to go visit "Waterpark Jack" again. That's not counting the Yankees games I'll be going to...

So for the first time in a long time, I can say with all honesty... "What Off-season Depression?!"

For everyone that contributed to this: I love you all and can't thank you enough for being in my life. I don't say that enough.