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Monday, April 25, 2011

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.

Friday, April 8, 2011

"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.