I Owe You A Thank You

After a recent unprovoked attack by a little known acquaintance, I realized something important. I don't say thank you enough. So here goes:

Thank you to all of you. Every one of you that reads this blog. You do something for me that you may not even realize. You support me in a way that I need more now than ever. You give me an outlet. Writing about my struggles with my son's autism allows me to release the stress that I used to keep bottled up inside me. You see, once I write about something that happens, it's pretty much forgotten about and my blood pressure drops and I feel so much better.

Having a support system is a very important thing. People who don't have anyone there to turn to tend to lash out at others when they get stressed out. They can be mean to others when they feel overwhelmed in their own lives. They sometimes use the stress that they feel welling up inside them as an excuse to take it out on someone else who might be in their path at that given moment. But you see, I don't want to be that person.  I want to set a better example for my son. I want to take the higher road.

Thank you for taking the five or ten minutes to read what I write every time I have something happen in my life, whether it is good or bad, and I find the need to tell someone about it. Thank you for sharing the ups and downs in my and my son's life. Thank you for caring enough about us to take the time out of your day to selflessly read about us. I know that sometimes I can be "preachy" and sometimes I can be overly emotional. But hey, that's me. So from the bottom of my heart, and Lex's, thank you.

And besides, who doesn't love this face?

I cried tonight

Today I took my son Lex to the Yankees game. I won't lie, I was so excited. For the first time, he was excited to go. When I asked him a few days ago if he wanted to go to the game, he actually said yes. Usually, he would say no and whine until I would psych him up for it. So I was beyond excited.

You see, baseball, specifically the New York Yankees, is my number one past time. I love going to games. Watching the games. Listening to games. And right now they are in the hunt for a playoff spot. So I was thrilled to be taking him today to the game and have him actually look forward to it. Not only was I taking my son to the game, but my boyfriend Chris was also going (who admittedly does not enjoy the game, as he is a Brit and is a soccer (excuse me, football) fan) and my parents as well.

But it was not meant to be. Not even two pitches in and Lex was already not interested in the game. Within a half inning he was bored. Didn't want to be there. After an inning he asked to leave. It was all I could do to not cry right there. But I just tried to keep him occupied and happy. My mom took him for a walk, bought him some ice cream. Then Chris and I took him to the museum but it wasn't really doing any good. He wanted to leave. I got to see a few friends while we were there, which was nice, and they got to see Lex, which is always great.  But we left right as the fifth inning ended. Lex saw maybe an inning or two.

On the drive home, I tried really hard not to cry. A few tears escaped as I explained to Chris that I was sad because I thought we had finally turned a corner because Lex had shown interest in going to the game. But it was just not so. I shook it off and gathered my composure.

But after I got home and put him to bed, I sat down and cried. I had really been looking forward to this. I had a bad few weeks. All I wanted was to enjoy a few innings of my favorite thing in the world with my son. But it just wasn't meant to be.

Hopefully next time it will be better. I may be disappointed, but I don't give up. And neither does Lex.

Strangers Can Make Make Your Day Or Break It

In the last few months, there were two things that happened that affected my and my son Lex's life dramatically, one in a negative way and one in a positive way. Since I'm always "preaching" about awareness, I would like to share these with you so you can see how something that a stranger did changed the outlook of a day (or more than a day) for us. 

The Negative:

I took my son shopping at Target a few months ago, which is his favorite store due to our tradition of buying a bag of popcorn upon entering. Unfortunately, after about 10 minutes of shopping, he got agitated and started to have a mini-meltdown in the shoes area. As I have learned to do, I talked to him to calm him down and after about 3 minutes he stopped crying. I was rather proud of myself for getting him calmed down in such a short amount of time until I noticed this woman staring at us. 

The woman proceeded to walk over to us and, completely unprompted, asked me "What's wrong with him?" with a disgusted look on her face. I was mortified that someone would have the audacity to not only say that but to boldly come up to me without knowing me. So I replied "Nothing. What's wrong with you?" Needless to say, she didn't like that. And I just walked away before I did something I regretted or didn't want Lex to see.

Now, many people have said to me, "Oh, maybe she didn't mean it in a rude way." Trust me. I was there and I saw the look she gave my son. I have seen it a million times. I also won't lie and say that I walked away because I was the bigger person. No, I walked away because I was afraid I was going to start screaming at the woman or give her a lecture on autism and not judging people if you don't know them.

The moral of me telling this story is this: Think before you speak. Especially when it comes to parents and their children. Your words can cut right to the quick and hurt more than you can ever know. 

The Positive:

A few months ago, Lex was battling one of his many colds / illnesses that he gets at the changing of the seasons. As I have described before, he loves his 'pushbutton' (the iPod Touch) and uses it pretty much every night in bed. One night, I heard Lex start hysterical crying in bed so I ran in to find out what was wrong. Lex had gotten sick in bed but that wasn't what he was crying about. He had gotten sick on his beloved 'pushbutton' and the screen had gone black. He was absolutely inconsolable. And for that matter, so was I. He cried and cried and cried and kept saying "Mommy can fix it!". Except I couldn't.

So as with everything that I do, my first thought was "maybe someone on Twitter will know how I can fix it". So I started barraging Twitter with tweets asking for help. I followed every piece of advice I got. But to no avail. The iPod was deader than dead. And I was facing nights of Lex crying, asking for his 'pushbutton'. This was a nightmare, as this iPod Touch cost me $400 and I didn't have the money to replace it. 

I had talked about my son's love for his 'pushbutton' in a previous blog posting, so when I tweeted that it was dead, my Twitter 'friends' knew of my plight and understood my complete devastation. 

But that's when the unbelievable happened. 

One of my Twitter friends, a woman named Sascha, sent me a Direct Message. She told me that she was upgrading to a new piece of technology and would like to donate her current iPod Touch to Lex. The super amazing part? I have never met Sascha in person. She lives in England and we have only communicated via Twitter. After protesting for a day, Sascha insisted that she be allowed to send the iPod to Lex and I finally relented. The day that Lex got a package in the mail and opened it was one of the happiest in both of our lives. 

I would also like to note that Sascha wasn't the only person to volunteer to donate to send their used iPod's to Lex. I also got two other offers after hers. Both from people I had never met in person. How is that for 'kindness from strangers'?!

What I would like you to take away from this blog post is this: Just because you are a stranger, doesn't mean you can't affect someone's life. Either positively or negatively. 

I Wonder What People Know About Autism

A few weeks ago, I was sitting here thinking “I sit here and talk about how I want to educate people about autism, but I wonder, what do they already think about it?” So rather than sit and think some more, I took action, put together a short list of four questions and posed them to my friends and family (and some random “tweeps”) on Twitter and Facebook. This blog post compiles their responses to those questions and my responses and comments to some questions/answers that were gathered. I’d like to first thank everyone who participated (over 20 people) and gave permission for me to use their comments.

My first question was:

“1. Do you know someone who is autistic? a. If so, what is the age of that person?”

I was pleased to see that the majority of the answers to this question was that yes, most people knew someone who was autistic (82%). Even more surprising was the number of adult autistic people that people were familiar with (8). The diagnosis of autism prior to the last ten years was not as common as it has become lately, so this was rather surprising for me to see. The average age of those known were teenagers, with the youngest being 4 and the oldest being in the late 40's.

The second question asked was:

“2. What percentage of children today do you think are diagnosed with autism? (no looking it up!)”

Out of 22 respondents, 6 people got this answer correct (or close enough to correct that I gave them credit), which is just less than 1%, or 1 in 110 children. The surprising part of this question for me was that of all those surveyed, 50% of the answers thought that more than 10% of all children born today were diagnosed with autism.

While the first two questions were more about facts, the last two are more about interpretation and personal experience. This is where I really asked people to be honest and I got what I asked for (and appreciated it more than you know).

The third question I asked was:

“In your own words, what does “autism” mean to you?”

The response I liked the best was “Someone who is highly intelligent but sometimes 'in their own world,' making it hard for them to concentrate, interact with others, and be considered socially 'normal' (air quotes intended)”.

Some people put their own personal spin on the question (which is just what I asked for):

“To me autism means someone who sees the world a little differently, someone who notices the details that other people look past and someone who likes things to be a certain way. Someone who may be a little awkward with other people but someone who rewards you by giving back 10 times more love and friendship when you make that little extra effort to get to know them.”

“To me autism means different behaviors for each individual. it does mean that each individual is not functional, it just means that they have a different learning style. Some are more vocal than others, while some have repetitive behavior. It also means preparation to me. It is quite common that a child with autism is unable to be gainfully employed, to have a relationship, and may need some assistance in monitoring their funds for future use, with access to state assisted programs.”

“Autism means to me a person that just has a missing link. Most of the children I have known in the past are highly intelligent. They just have a hard time socially.”

One friend was honest in the fact that they weren’t always sure that they knew that “normal” children were like: “Honestly, I don't know how to articulate it. As someone who's never been a fan of small, colorful children, I find that I'm oddly more comfortable with autistic kids even though I have no idea what I'm getting myself into most times. Or rather, what's going to come my way at any given time. But maybe that's just me getting older and more laid back with kids.”

Some more clinical definitions: “Autism is a socio-developmental disorder characterized by an inability or difficulty in effective, meaningful communication with others, coupled with repetitive behavior patterns.”

“Autism is a disorder that primarily affects communication and interaction, may also be accompanied by speech delay and/or other developmental delays and by sensory sensitivities, and which affects the ability to function to varying extents and degrees.“

“The person's brain is wired in such a way so that they do not interact with society in the way the majority people would.”

“Autism is a disorder which affects the learning and development of someone. Someone can be autistic but be high functioning but it could also really affect them.”

One person explains about the differences in the spectrum: “I know “autism” is broad and covers a whole spectrum. There’s “high-functioning”, which are the folks who can speak and learn new tasks differently from the rest of us. But when I hear “autism”, I generally think of those who are ritualistic and fixated on certain objects or subject areas and have a very strict method for doing things. For example, the 6-year-old I mentioned earlier has a very specific way of putting his toys away. It consists of a pile and there’s a method to how the toys get stacked in that pile. It can be very time consuming for him and his mother, but it’s part of his nightly ritual.”

Simply put: “To me it signifies problems with communication and relating emotionally.”

Some positive perspectives were also given:

“Autism means a person who has some learning difficulties and social interactions may be difficult for them, I view autism as an additional obstacle but not necessarily one that can not be over come.”

“Children who react to over-stimulation by withdrawing within themselves but who may have a special skill set that takes some time to show.”

“I don't look at something is wrong with them. I just look at as they see the world differently.”

“I've never thought about that. I was raised to believe that everyone is the same but some of us 'learn' at a different pace.”

One respondent noted that “It is a very disturbing trend that seems to be growing larger.”

An interesting observation was made by one person in that: “"Autism" means to me someone that is quiet, and has problems communicating with others. A person who prefers to do activities by themselves rather than in groups. This can be both Adult and children. I do not think "Autism" has age limits.”

The last question I asked was a selfish one:

“4. Give an example of something you could do to help out a parent of an autistic child.”

I asked this question because as a parent of an autistic child, sometimes there is nothing more I would love than for someone to acknowledge that my son DOES face obstacles. And you know what? It’s damn exhausting as a parent. Any parent of a special needs child, no matter what that child has, will tell you that. I know that I’m lucky because my son is highly functioning and is relatively a good kid, but catch me on a day when he’s having a rough time and you probably wouldn’t recognize me. A bad day for him equals a horrendous day for me. So I asked this question to educate the masses.

Take the time to read the answers. The next time you have a free night and can spare it, take one of these ideas and put it into motion for someone you know. Trust me, the person who’s life you touch will thank you a million times for that little thought of kindness.

“For some parents I babysit and hang out with the child. For those I am not close with I can assist in obtaining state benefits, especially title XIX for older children, and Special needs Trusts for younger children so they are capable of living a full long life taking some of the stress from the parent.”

“Not look at that parent and just think they don't know how to discipline their child. Every child deserves to be at a restaurant, church, carnival. Some children have a hard time with these situations, but we can smile at the parent and be proud of them that they expose their child to all the wonders that they deserve!!”

“I have invited parents of autistic kids to speak to my police officers to help them understand how to handle calls with them better. This also gives the parents a better understanding on how we operate.”

“I would try to help by learning more about that parent's routine and redirection methods, and engaging both the parent and child regardless of the behavioral context or situation.”

“Listen and offer support. Know it isn't always easy and that they may be focused on other things.”

“Depending on the situation:

me as a non parent: treat the child as a human for a start - not as a moving doll, have more patience with them

me as a parent with a child the same age: encourage my child to play with him, to have more patience with him and to see past any disability.”

“Give them a hug. Offer to help (every parent needs a night off!) Get involved. Learn more about autism.”

“Well, beyond being willing to listen and donating to autism research/charities, I think the most helpful thing one can do is educate themselves. You can't treat any condition without first understanding what it is. While I do think offers to help baby sit and the like are noble, unless one has experience working with autistic children, I feel this could go awry.”

“I think the best you can do for the parent of an autistic child to treat them the same as any other parent, every child has ups and downs, tantrums and their own idiosyncrasies. Being there and listening when they need it just as you would with any friend and making sure that they feel loved and supported when ignorant people judge them.”

“Be there to support the friend, or help when they need something. I have found that people with children, with or with out disabilities or diseases, really just need support and someone willing to help them every now and then.”

“Give them time in their own home so child is comfortable in routine and spell the parents to allow them to get things done.”

“Be understanding. Watch the child once a week so. They can go out and enjoy something.”

“Spend time with the child so that the parent can have some respite. Spend time with the child and the parent, and include them in a fun activity. Make them feel as "normal" as possible.”

“Allow my child to be their child's friend and encourage such friendship.”

“From reading your past blog post I learned it's better to ask questions regarding autism then to assume something.” (THANK YOU!)

“Treat them the same as a parent of any other child (inclusion-wise); ask questions (out of children's earshot) to help gain a better understanding.”

“Listen to them.”

“Learn the different aspects of autism. All autistic children aren't the same. This is something that I never knew. Not every person with autism is Rain Man.”

“I think the most important thing would be support and the willingness to learn more about the effects of autism on both the child and the parent(s).”

“First, better educate myself on "Autism." Then making sure others around that family understands about it also. Next, I would offer support to the parents and family involved. Making sure that they know they are not alone, and there is help for them.”

Thank you for reading this. It means a lot to me. And to Lex. And thank you again to everyone who contributed to the content

The Lure of the Sports Fan's Road Trip

Last year, it was seeing the Yankees play in Chicago against the Cubs.

This year, it's seeing the Yankees play in Kansas City against the Royals.

Hell yes.

Some of you may not understand this. The excitement over spending money to go to a city I'm unfamiliar with, to go to a stadium I've never been in, to watch a team I've seen play day after day, play against a team that's not really anything special (sorry Royals fans) may seem pointless and kind of stupid.

But to anyone who has been on a road trip strictly to watch your favorite sports team play, you get it. You understand my excitement. The thrill of entering a new ballpark that you've never seen. Trying a new "signature" food that you just have to have. Exploring the city in your "non-game" time.

This KC trip is four days long for me, and includes a game every single day. I simply can not wait. The thought of that much baseball in such a compressed amount of time excites me beyond belief. And the fact that I'm going to get to go with my friends just makes me even more excited.

As I'm writing this, I think there are about six of my friends who will be joining me in Kansas City, not counting my girlfriend who I'm staying with. Last year in Chicago, there were over a dozen of us who ended up congregating and enjoying each other's company for baseball, food, sights, and way too much booze. I'm betting this year's trip will be just as much fun as last year's and I can't wait to find out.

I. Can't. Wait.

How To Be Lex's Mom's Friend

One thing I've noticed in the past few years, especially since my son's autism diagnosis, is that I have come to rely on my friends more and more than I ever have. Many people did not realize that right around the time of my son's diagnosis, I also was going through a separation which then lead to divorce. Even less known was that I lost contact with some of my closest friends at this time, due to both of these events.

So here I was, venturing into a new phase of my life, pretty much on my own, with only my family and some old friends to support me. I was lucky enough to meet some new friends though within a short while and this was a very good thing for me, and have grown those friendships into ones that are near and dear to my heart to this day.

This made me stop and think. How can I help people be a better friend to me when it comes to Lex, since my life is a little, well, different? So here we go:

1. Ask me about Autism. I once had a friend tell me "I don't know much about autism, can you tell me if there's anything I need to know before I meet him?" This touched me because that friend actually took the time to let me know that they wanted to make sure that they didn't do anything "wrong". Ask. I will be happy to answer any questions you have. No question is too simple or too complex. If I don't have the answer, there are websites I can direct you to that will help.
2. Ask me about Lex. Ask anyone and they will tell you, I'm insanely in love with my son. I will brag about him from here to the moon. Every little improvement he makes, I would love to tell you about. Just listen. If you know me, I love to talk. I'm a New Yorker, remember?
   
3. Invite us to things. One of the hardest things for me is that Lex doesn't have many friends outside of his daycare. Because both his father and I work, we don't socialize with the other parents in his preschool class and he doesn't get invited for playdates. Upon his diagnosis, I saw a quick decline in our inclusion in social events. Nothing hurts more than being excluded because people are afraid of something they don't understand, and especially when they take it out on a kid who has no idea that he's the one being punished.
4. Don't assume or generalize. Many people think that Lex won't like something because they heard that autistic kids don't like that. That doesn't work because not all autistic children are the same. There is a autism spectrum and children can fall anywhere upon it, both on the low end and the high end. This means that they can be low or high functioning. Lex is actually on the low end of the spectrum which means he is high functioning.
   
5. Please don't tell me you are sorry. I don't need your pity. I need your love and support. I'm proud of my son. The strides he has made with the challenges he has faced are pretty simply amazing.
   
6. Be understanding if I don't see you often. I may not always have free time, but when I do, I love to live it up and get out. If you have spent any time with me, you definitely know this. But when I'm home with Lex, it's all about Lex. I like to plan fun things to do with him, but my motto is that if Lex is here, "it's always about Lex". I don't have a babysitter here in CT, so I spend a lot of time home in front of my computer at night, hence my Twitter "family".

I'm sure there is more, but for now, that's all I can think of. I love my friends and my family. You all mean the world to me. And maybe this will help me expand that world just a little bit more.

Lex and I welcome you to our world. And to put it simply - it rocks.