Saturday, October 8, 2016

"But he doesn't 'look' autistic..."

Some people say to me "but he doesn't 'look' autistic"....

Here is a story of how Lex struggles:
This weekend we were supposed to travel to Long Island to attend multiple functions (or as Lex called it, "a ceremony, a party and a birthday party") and spend some time with our family.

Unfortunately, yesterday, while I was home nursing a migraine, I got a call from his school nurse saying Lex had a low grade fever and just didn't seem like himself. So like the over-protective mother I am, I went and picked him up early and brought him home.
He seemed ok for most of the day and night, but right before he hunkered down for the night, I gave him his last dose of Tylenol and some water. All of a sudden I watched him veer into the bathroom instead of his bedroom. What had gone down had promptly come back up, along with his dinner. The poor kid was miserable and his fever was back. I eventually got him to sleep with the understanding that if his fever persisted in the morning, we wouldn't be going to Long Island, as his grandparents were babysitting his little cousin for the weekend and he certainly didn't want to get her sick, or any of the other kids we were planning to see.
Fast forward to this morning. I got little sleep as I kept waking to check on him. He awoke this morning feeling much better and with no fever around 7 am. I thought we were golden and started packing bags and getting ready to go. It was around 9 am when I decided to check his temp again before I got him dressed. And then the hammer fell. His temp was back up to 100. I watched his face fall as I told him his fever was back and we wouldn't be able to go. I explained again about being a responsible older cousin and friend and how I was sure he didn't want to get anyone else sick. He agreed and even though I knew he was upset, he perked right up when I told him that he could have some extra iPad time since the best way to recover is to rest and take it easy.

Everything sounds great, right? You think my story is over, but it's not. This is where his autism comes into play. Around 1 pm, I hear crying coming from his room. I head in to see what's going on. He's standing in the corner with tears streaming down his face. I ask him why he's so upset and he says to me "Momma, I have a plan. I feel better. We can go to New York now or Yiayia and Papou can come here. Is that a good compromise?"  (Yiayia and Papou are Greek for grandma and grandpa). This poor child thought that we weren't going to NY because he thought his getting sick equated with a punishment. He commonly uses the compromise/"I have a plan" speak when he is in trouble and wants to get out of it. So for the next ten minutes I had to try to convince him that he did nothing wrong and that the only reason we weren't going to NY was because we didn't want anyone else to get sick. He kept telling me he couldn't calm down because he was too upset. I felt horrible and I tried to comfort him the best I could. I ended up using my last-ditch diversion technique that I save for bad meltdowns like this, which is a stash of new preferred toys/items in another room to divert his attention. Luckily, it worked and the sadness and depression was quelled.

I share stories like these so people can be more aware of what our life is like behind our closed doors. Life isn't always big cheesy smiles and funny stories. Sometimes, they include randomly finding my son crying in his room and knowing how to deal with it. I share so people can see that my son is a sensitive, loving child, who isn't perfect, but he tries so damn hard every day at everything he does. I love him in the happy times and in the sad times. Today was a rough day. But i wouldn't trade it for anything, because it's a day with Lex. And Lex is my everything.

Sunday, June 26, 2016

Sorry, but your kid isn't like my kid

I can't tell you how many times I've heard this phrase: "my kid is just like your kid".

No. I'm sorry, but no.

Unless your kid is autistic, your kid is NOTHING like my kid. I know Lex sometimes talks, acts and behaves "typically" in front of you, and the stories I tell you may have you believe this, but you are wrong. I give you a snapshot of maybe 10% of his life. If you do not live with me or his father, you cannot begin to understand what he is truly like and therefore, cannot compare your child to mine.

Let me take another stab at this.

Has your child been invited to a birthday party from a schoolmate this year? If so, our kids are nothing alike.

Does your child get singled out on the playground for their preference to play by themselves? No?

Do you have know what? I'm not going to continue. I made my point. It's insulting to parents of special needs children to try to tell us that our kids don't go through anything different than typical children. Because trust us. We WISH this was the truth. We wish our kids were just like yours are. But that's just not the way it is.

The point of this post is that sometimes it's best to keep your opinions to yourself. I lost a friend over a conversation that went something like this. I got accused of using Lex's autism as an excuse. Yup. Chew on that one for a minute.

Monday, June 6, 2016

A Guide To Social Media (A Satirical Blog Post)

Using Social Media Platforms (Facebook, Twitter, Snapchat, Instagram, etc...) can be scary, so I'm here to help! Here are some tips I've learned through my years of online experience on how to use Social Media most effectively:

1) Make sure to post the same thing on every Social Platform. Someone might miss it if you don't!

2) When posting a "selfie", use filters. Make sure to eliminate any trace of blemishes, this way when people meet you, they will totally be able to recognize yo....oh...wait...

3) Ask celebrities to retweet you constantly on Twitter. They TOTALLY love that!

4) Send Facebook game requests to your friends who don't play them. This will encourage them to join you! If they don't respond the first or second time, send it three or four more times.

5) Snapchat filters and stickers are so much fun! Make sure to use them all the time and even use them outside of Snapchat! Babies love them too!

6) GoFundMe is a great way to get people to give you money for stuff you are too lazy to save up for yourself. Write up a great story about that trip to Disney you always wanted to go on or how you always wanted those calf implants.

7) If using Twitter to promote your business or blog, make sure to complain every time your tweets don't get retweeted or liked. People/Customers love seeing that. Also, no need to have separate business/personal accounts. They will be able to figure out which tweets are which.

8) Use Facebook and Twitter as your personal diary. Never be afraid of sharing too much. There is no such thing as TMI.

9) If you are a parent, please make sure to document every single moment of your child's life! Nothing is too embarrassing! Those kids will grow up and laugh! (we think)

10) Students love to trash their teachers, why not online, right?! No one will ever figure out it's you.

11) Sub-tweet or Vaguebook. All. The. Time.

12) Humblebrag about yourself. People know deep down you are really modest.

13) Change your username on Twitter/Instagram/Snapchat every week. People love the mystery.

14) Invite people to everything using Facebook Invites. Hardcopy invitations are so 2010.

15) Use one of those "following me"/"unfollowing me" programs on Twitter and have it post to your account every day so we can all find out how many people followed/unfollowed you every day!

16) Keep your accounts public, even if your company could potentially be watching your social media accounts. No one cares what you say!

17) If you don't trust your significant other, share a Facebook account with them. That's sure to keep them honest!

18) Live tweet TV shows without using hashtags. No one really uses that mute function anyway and people really like your recaps!

19) Don't filter yourself. Say whatever comes to your mind.

20) And last but not least, don't ever delete your MySpace account! Tom would miss you too much!

(Disclaimer...I am writing this as a satirical blog post. Which means that I'm poking fun. At me. At you. At people we know.I have done all of these things at one point or another. Don't take this blog post seriously. It's called satire for a reason. I'm trying to make you laugh.)

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 through 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 slogan 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?