Friday, May 10, 2013

We all knew my voice was loud...but this time it was worth it.

This blog posting is a follow up to my blog posting of May 7th, regarding my local franchise Red Robin's decision to serve a different pasta than the spaghetti they had pictured on their kid's menu:

After sharing my blog post for two days, Red Robin contacted me via Twitter Direct Message Wednesday night asking if I had heard from the executive management of the franchise that I had the issue with, as they had been trying to reach me. As the number I had give them was my work number, I let them know that I hadn't heard from them yet, and there were probably messages waiting for me as I was away from my desk most of the day.

Upon returning to the office on Thursday, I retrieved three messages from the Executive Vice President / Operating Manager of the local franchise. The messages were apologetic in nature and expressed a sincere need to want to talk to me. She left me her personal cell phone number and asked me to contact her at my earliest convenience. I called her back and left a message.

She shortly returned my phone call and our conversation commenced. She immediately apologized for the strife that Lex and I encountered. She explained that she decided to make the decision herself to change out the pasta in all of her 7 franchise restaurants because she considered the cavatelli pasta to be a higher quality pasta than the spaghetti. One thing that I didn't know is that she made this decision around six or seven years ago. She fully admitted that she never thought of the consequences of substituting the pasta without informing the customers until she heard about my complaint. It was also mentioned that it would have been smart to maybe have the servers tell the children when they ordered the spaghetti that they would actually be getting a different pasta. But hindsight is 50/50.

She said that once she heard about the impact that the "bait and switch" would have on children with autism, she said she knew my complaint made sense, as she knows children who are affected which autism spectrum disorders and could see how that would cause discomfort.

She continued to tell me that after speaking to me, the manager of the franchise restaurant that we went to went out on his own and bought boxes of spaghetti to have on hand in case there were children who came in who had the same issue. I was surprised to hear this, as one of the things that he told me was that he wasn't "allowed" to do this.

But now for the good news.

I was informed that from this week forward, all seven of her franchises will carry spaghetti. The servers have been instructed to offer the children that order the spaghetti the choice of it as pictured or the cavatelli as was being served for the last 6-7 years. I completely understand allowing both choices as some children who are frequent visitors to the restaurant (like my son was) may have come to love that and would be upset to now learn their favorite food is all of a sudden gone.

I was asked for my home address as she wanted to invite Lex and I back as her guests to prove that things have changed. Yes, I'll be back. In fact, I'll be visiting all seven franchise locations. And I'll let you know exactly what happens when Lex orders the spaghetti. Let's all pray that he gets what he orders, because I would really hate to intentionally be inducing a meltdown.

Tuesday, May 7, 2013

Why We Won't Be Going Back To Red Robin Again

Two weeks ago on a Sunday night, after a long day, my son and I arrived at Red Robin for dinner. This has long been his restaurant of choice because he likes the free balloons and he is able to order for himself because of the "picture" menus.

The "picture" menu is key to this story. One key learning tool for children with autism is the use of Picture Exchange Communication System, or PECS. This is the use of small pictures to be used instead of words to communicate. Kids will exchange them with their therapists in order to get what they need or even "speak". It is the tool that Lex first used to communicate before he started talking.

On this night, Lex strayed from his usual order of pepperoni pizza. He was studying the menu and pointed to the picture of spaghetti and said to me "I want the spaghetti, no sauce, butter."  So when the waitress came, I placed our order and thought nothing more of it.

Our service was spotty that night even thought the restaurant was half full. Finally, a server arrived with our food. As she put it down, I looked at Lex's food. I stopped the waitress and asked her where the food he ordered was, because that obviously wasn't it. She had brought him a bowl full of cavatelli pasta, not spaghetti. She said no, that's what he ordered.  I then asked to see my waitress. While waiting for her, I had to convince Lex to just eat the pasta, even though he knew it wasn't what he ordered. The last thing i wanted was him to have a meltdown in the restaurant over not getting what he was expecting. After some hemming and hawing, he finally caved and started eating. I was so relieved there were no hysterics or issues.

When my waitress finally came over, I asked the same question. She proceeded to tell me that the cavatelli pasta was what the restaurant considered "spaghetti". I pulled out Lex's menu and showed her the picture of the menu item, which clearly showed traditional spaghetti. I asked how they can offer a menu item titled and showing one thing and knowingly serve another. My thought process now was heading towards autistic children. I know many autistic children who simply need to have structure at mealtimes. If you show them a picture (thinking of the PECS system), you pretty much have to give them what is on the picture. Giving them anything else will cause hysterics, crying, meltdowns, etc...  I was lucky this day in that Lex decided he was hungry and would eat after just a little cajoling. I knew that this was not ultimately the waitress' decision so I let it go.

But I wasn't done. I had to find out what was going on.

While I was sitting at the table, I took pictures of the menu item and of Lex's meal and I tweeted them to the Red Robin Twitter account, asking them to tell me how they could justify telling me they were the same. This got their attention. They direct messaged me and by the next week, they had put me in touch with the manager of that restaurant. But the discussion I had with him was even more disappointing.

I recounted my experience with him and was given the following explanation for the replacement of the pasta: It wasn't the restaurant's decision to make the pasta switch and not change the menu.  It was the Corporate Office's. Corporate made the decision to replace the pasta and not change the menu because it was cheaper. So basically, they don't care about false advertising to kids. And in my case, and to all parents of kids with autism, where that could potentially mean a public meltdown, it means we have to deal with managing the emotions of our children, because we aren't important enough. Money is king, you see.

For these reasons, Red Robin has lost two loyal customers. I'm extremely disappointed in the fact that no one seems to care about pulling a "bait and switch" on these children who actually depend on getting what they order.

Tuesday, April 2, 2013

"Degrading" Doesn't Mean The Same Thing As "Sexist"

*Note: I hesitated to post this for only one reason. I did not want anyone reading this to think I was making a personal attack, mainly because I have great respect for one of the women involved in the group that I speak about. Please keep that in mind when reading this. Thanks. -Alison Faye

Three weeks ago, I was browsing Facebook, as I do just about every night, when I came across a group's page that made me do a double-take, because I couldn't believe what I was seeing. To make you understand why, I need to give you some background information.

The group who's Facebook page I was looking at was a group that was founded to bring together female soccer fans and help expand the visibility of women in the sport. While I am not a member, I applauded their initial goal of trying to raise the view of women in the sport from just "silly fan girls" to educated fans that are equal to men.

Now don't get me wrong...I fan girl. I fan girl all over the place. But I also can be a well educated fan who can sit and talk sports for hours as well as any man (granted, my sport of preference is baseball, not soccer). So, I'm not saying I'm perfect.

The reason I did not decide to join the group is that I noticed that the main account that the group would tweet under seemed to forget its main mission sometimes. It would occasionally tweet extremely odd comments, talking about how great some player looked with his shirt off or who the top five hottest players were on the US Men's team are. To me, these comments are fine for personal accounts, but coming from the official group account, made for a bad taste in my mouth. This screams "fan girl" to me. But again, this is my opinion only.

So flash back to three weeks ago and the Facebook page. Right on the main banner is this phrase in large letters: "Let us blow your mind." Now, I fully admit that I thought at the time that I could have been way out in left field but the first thought that came to my mind was "Is this for real? All I'm thinking about when reading this is "Let us blow your mind instead of your...well, you know..." So I did what any normal person would do. I asked three other people for their opinions. And shockingly, they all said the exact same thing I did. That it made them think that they were being offered an alternative to a blowjob.

I felt that for this group, that claims their mission is to elevate the status of women in the sport of soccer, posting this phrase was possibly unintentionally degrading to women. I also felt it would behoove me to let the founders of the group know how it made me feel because it was obvious from talking to others that I was not the only one who made that connection. I decided to contact the founders of the group thought their contact form on their group website. I described exactly as I did above, stating that I thought they might be unintentionally degrading women, and I knew that this was not their mission. I hoped that my notifying them would be received positively and with the knowledge that I was just trying to help promote their mission.

Fast forward a week and a half. No response has been received. No change was made to the Facebook site. Basically, I'm sitting here thinking one of the founders got my email and filed it in the round filing bin. Which now just pisses me off. It's about this time that one of the new women's soccer teams, the Portland Thorns, released a t-shirt with a slogaiin that read "Feeling Thorny?". The group's Twitter account tweeted asking what people thought about this. To my boyfriend's credit, he wasn't going to let the fact that they ignored my email slide, so he replied, asking if it was better or worse than the phrase on their Facebook page. The group replied that they forgot that they got a "sexist complaint" about it.

In no way did I EVER say that what they wrote was sexist. I used the word degrading. The two words mean something completely different. Being sexist means you foster discrimination based on gender. Being degrading means that something lacks honor or causes humiliation. In their conversation, the group account continues to use the word sexist, even though my boyfriend tried to point out that they had missed the point of possibly projecting the wrong image.

Fast forward another week and a half. Nothing has changed. Still no response. Phrase is still there. Hence the blog post. I didn't want to write this because it is a touchy situation with those involved. But I don't deal well with the degradation of women as a whole. And I deal worse with having my words misconstrued to make it seem like I'm ignorant.

All I did was try to help. If they don't want to take down the phrase, fine, that is their prerogative. But the polite thing to do is reply and say "Thank you, but we are ok with it." It isn't that difficult. Ignoring me is just plain rude.

Wednesday, October 17, 2012

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?

Sunday, September 23, 2012

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.

Saturday, July 7, 2012

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. 

Monday, March 19, 2012

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