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Thank you for NOT choosing United.

This Christmas, my Mom & Stepdad decided to fly Alex and me down to California for an impromptu visit. In the past, I have always found Christmas Day to be a good travel day, since most people are home with their families. Well, this year, I was wrong-so very wrong.

I want to start by saying we had many problems and simply awful treatment during our travels as a special needs family this Christmas…both to and from California. When I had some free time to reflect and seethe a little over the injustices and outright rudeness we were subject to during our journey, I really wanted to get to the *root* of the problem. So many people involved, so many crappy things happened. But who to blame? (Yes, I know, this is very mature of me.) I finally settled on United Airlines. Let me tell you why.

Although average people, like you and me, were rude to us during our travels, they’re not responsible for making my day easier; they haven’t all been trained in customer service. That’s life. Although the airport itself didn’t make it easier for my son and me to get around without complications, it really wasn’t their job. And although the service people (who provide wheelchair escorts and the like) refused to make exceptions because of our situation, they were truly just doing what they were paid to do, and they do contract to the airlines, after all.

United Airlines, however? We PAID them for a ticket. We expect customer service, because they are *trained* and obligated to give it to us. It’s their JOB to make their customers happy. When I booked our flight I made it very clear that I had a special needs kid with aggressive, hyperactive tendencies, who needed a wheelchair because I don’t have a stroller big enough. I have worked customer service, and I personally know that they should have and could have worked harder to MAKE it happen. And yes, if you were wondering, they did have the authority, because all of the aforementioned airport people contract to United, and are therefore responsible for doing United’s bidding. Eventually, *I* made it happen, so I know it was possible. Ergo, I blame United Airlines.

**(Side note: Wondering why a wheelchair? Wheelchair + Ipad = quiet, happy boy, easy to push around airport until flight boards. Alex running free through the airport = lots of running away, touching, lack of safety, and manhandling that may have resulted in aggression, tantrums, and general mayhem that would simply make air travel even more stressful for EVERYONE. Trust me, I tested my theory and knew it would work. And it did, once we got the wheelchair.)**

So back to United and their suckiness (which is not a word, I made it up just for them): I arrive Christmas day to board our flight. We already have our boarding passes, just one bag to check, already paid for. Check the bag and get the wheelchair and we’d be on our way! After a confusing couple of minutes, I chose the “additional services” line to see if that was where we got the wheel chair. Many moons later, the same two agents are helping the same family. Alex begins to tantrum and freak out, and no one even looks up. Another agent busies herself off to the side, strategically NOT looking at me. I try joining another line, with a screaming autistic child, for whom I was supposed to have a wheelchair already, in order to avoid such troubling behaviors. Said line does not move. Tantrum continues, hitting and self-harm begin. I search for agents, with pleading eyes and a distressed face as my son begins to flop on the ground and hit himself. Again, no one looks up. No one appears to care. United agents, fellow travelers, not one person gave me a second look.

I decide to change my strategy, to interrupt an agent helping another customer. This just results in the agent & other traveler shooting me dirty looks and continuing to completely ignore me. I eventually walk over to the front of the check-in line and plead my case to the people in line with my screaming child attached to my waist. One couple, the couple in front, tells me to go ahead and go next. The rest of the line just looks put out and irritated. Two nice people-Yay!

So I finally reach the place to check my bag and speak with a real person, where we stand for yet another 5 minutes until I grab the attention of an agent who obviously has no time for me and my screaming child. She starts to brush me off until I manage convince her that my son needs the wheelchair United PROMISED us. In an OMG-I-can’t-believe-this-lady-is making-me-go-out-of-my-way kind of manner, she says that fine, she will call for a wheel chair, but it might take “like 10 minutes or so.” Then she told us to stand to the side. Really? Do you know what it’s like to ask an autistic child of my son’s nature to sit or stand still for any period of time?

15 minutes later, we had our wheelchair, the Ipad was in full swing and Alex was calm. The rest of this leg of the trip there was quite pleasant (aside from the security line) as I rolled him though the airport, stopping here and there to replenish snacks and drinks that were necessary for the trip. My only complaint at this time was that, when boarding the plane, United did not even call an option for people who needed a little extra time to board…but they gave their first class passengers and premier execs red carpet treatment! Also, when it came time for our section to board, people actually had the gall to cut in front of my kid – who was IN A WHEELCHAIR – in order to get on the plane faster. Wow. Thank you, humanity. Merry Christmas.

Thank God the plane ride was a breeze…Alex handled it like a champ! So this was all a very crappy experience, but I sort of let go of it as a disgruntled “I’m working on Christmas” thing. I had hoped the way back would be easier. Hah. Wishful thinking.

If my experience at PDX was bad, heading back from SFO took the cake. My mom decided to go in with us this time to help me move things along quicker. I smiled as she loyally walked back and forth, trying to find us a wheelchair after we had been waiting for over 10 minutes (after being treated, yet again, like crap, in the check-in line). My mother was determined to *make* it happen for us. *That* is the kind of customer service United airlines should have offered a special needs family. It’s a simple thing. I didn’t ask for 3 guides, a personal nanny, and a free ticket. I just wanted a freaking wheelchair to borrow to make everyone’s life easier.

So an agent with a cool wheeling-chair with a seatbelt (even better) starts to stroll right past me, and I yell out “Is that for Alex Zelinka?” (Ya gotta be quick with these people.) Startled, the wheelchair guy looked at his device and said “Oh, yeah.” I smiled. Great. Let’s do this. He gets us through security (where Alex throws a perfect tantrum that actually allowed me to throw the wheelchair-bringer a “See? This is why I need a wheelchair” look.)

To his benefit, the one I refer to as “Wheelchair-bringer” was quite kind, but I bristled when he said he could not leave the wheelchair with me. We were 2 hours early for our flight. Seriously? He told me not to worry, once I got to the gate, I could request another wheelchair directly from United, and it would all be fine. Okay, I thought, that doesn’t sound too horrible.

I put on my nicest smile when we got to the gate and asked for that wheelchair. I was immediately turned down and told to go to Customer Service because – and I quote – “we don’t do that.” Great. Customer Service desk, huh? This should be good.

Wheelchair-bringer dude stayed with me, bless his heart, as I approached the desk and knew immediately that this was not going to be a fun conversation. The agent looked up from her computer with a bored look on her face, bid me good afternoon and asked what she could do for me. (Her rehearsed greeting reminded me of one of those agents at a call center you have to deal with when trying to pay a bill or something.) I began to ask for what I was promised when I was, again, immediately interrupted. She told me that Ma’am, we don’t do that and, besides wheelchairs are for people with disabilities.

Huh. No kiddin’? I interjected with the argument that my son was autistic with very high needs that are considered a disability-she stopped me, told me not to YELL at her and that it was not her *problem* that I had this kid and that she would call her supervisor so I could yell at him.

I was, for lack of a better word, flabbergasted. Not only had I *not* yelled at her, but her verbal assessment of the situation was everything special needs families hate about the world. I stood there with my mouth open, as tears filled my eyes. I was positively shaking with anger and frustration. Every fiber of my being wanted to tell her exactly how I felt about her attitude, and to yell it so at least I wouldn’t be accused of something I didn’t do.

She made the phone call and told me to go stand over to the side because she had other people to deal with. My mouth was still open, and it was all I could do to force myself to shuffle away from this woman without launching myself over the desk and smacking her face. I turned to the wheelchair-bringer and simply asked, “did I yell?” He shook his head to let me know that no, I had not yelled at this woman. About a minute passed when I remembered that I had some informational cards in my purse that explained Autism to people. These cards were designed to raise awareness in exactly this type of situation. I shakily pulled 1 out, walked over to her, and said “this is for you.” I then obediently walked back to my corner where I was told to stand & wait.

About 5 minutes later, I hear the customer service lady’s voice clear, and she says to me, “I have a son with Autism.” Wow. It took the last of my patience to keep my big, sarcastic side shut and just simply, knowingly say, “Yeah? Is he the quiet type or is he kinda hard?” She answered, “He’s hard.” I nodded my head. Then she said she was sorry, which was nice to hear.

Right about then the supervisor showed up with a puzzled look on his face. When the situation was explained (which only took about 30 seconds of me pleading my case), he turned to the wheelchair-bringer, told him to leave the wheelchair with the nice lady and her son and that he would be personally responsible for making sure it was returned when I boarded my flight. After he apologized to me, he turned to the Customer Service lady with sort of an angry look on his face and said “Is that all?!” She replied yes and, after a curt smile and a nod in my direction, accompanied by a glare in her direction, the supervisor stormed off, as if the agent’s lack of ability to resolve such a minor situation was unacceptable. (Well, I must say, I felt similarly.)

So ultimately, justice was served. I rocked a Customer Service lady’s world without stooping to unnecessary violence. United Airlines redeemed itself (almost). I was able to use the wheelchair for the remaining hour or so until Alex and I had to board our flight, which also went pretty smoothly.

But, yeah. I don’t think I’ll be flying United Airlines anytime soon. Sorry, guys. Most of your employees need a lesson in common courtesy, & maybe some sensitivity training. I’m sure they’re not all bad, but you could have fooled me.

**Final Note: In case any of you are wondering about whether or not the wheelchair thing was really necessary, and/or whether or not someone with a more severe physical disability was deprived because of our demands, the answer is yes, it was necessary, and no, we did not deprive anyone. Because I am who I am, I asked the final wheelchair-bringer at PDX whether or not he felt our needs were sufficient enough to request a wheelchair, and if there was some sort of shortage I wasn’t aware of. He said “Lady, when someone flying an airline asks for a wheelchair, we don’t question it. We bring a wheelchair. Trust me, there are plenty.

So there it is. Apparently, people are not abusing the wheelchair privilege, and we were just as entitled to help as anyone who requested it, regardless of the reason behind such a request.**

I rest my case.

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The 12 days of Christmas Break

The Twelve Days of Christmas Break (with a special needs child)

There are about 12 school days when kids are off school for the Christmas holiday season. These days are not so fun for Mommies, especially for those with special needs kids. But interestingly enough, these 12 days reminded me of a song we like to sing at Christmas…

So here’s my own personal version of a classic song to give you a peek into our 12 days of Christmas break (sung, of course, to the tune “Twelve days of Christmas”):

On the 12th Day of Christmas break, my Alex gave to me…

12 eggs a-breaking

11 trains to trip on

10 hours of jumping

9 cars a-lined-up

8 days of whining

7 kids complaining

6 angry parents

5 SLEEPLESS NIIIIGHTS….

4 Body slams

3 Melt-downs

2 injured limbs

And a really messy house to clean.

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20 Questions

In the last couple of years since we figured out Alex’s diagnosis, we have weathered many a storm. Part of the storm includes answering a boatload of questions. I understand the curiosity and the desire people have to understand or help our situation, and I appreciate it. Still, sometimes the same questions get asked over and over, and at a certain point you have to laugh at some of them.

So, this blog is focused on the most common questions I get when it comes to Alex, my son, and his Autism. Some of them have become comical, so I will answer them as such; don’t be offended, I truly find them humorous because of the nature of my son, and I know you couldn’t possibly know what you’re getting into when you ask such a seemingly harmless question! Others are more on the serious side, so I have tried to provide some informational, brief answers to satisfy my readers’ collective curiosities.

Now that the politically correct statements have been made, here are my top 20 favorite questions:

1) Q: What is Autism? A: To be brief, the most basic definition of the word Autism is “Self-propelled,” or, having a tendency to view life in terms of one’s own needs and desires. Essentially, Autistic people are often sort of stuck in their own minds. It is SO much bigger than this, but I promised to keep this short 😉

2) Q: What kind of Autism does Alex have? A: (Sigh) In short, Alex exhibits “sensory-seeking behaviors” equivalent to that of WWE style wrestling. I call him my own little personal pinball machine because he feels the need to bounce off everything nearby. He is smart, but his body gets in the way of his learning and communicative progress. And that is the tip of the iceberg.

3) Q: Are you going to have more kids? A: Probably not, folks, I’d really kind of like to stay married to my husband 😉

4) Q: How is Alex doing? Is he getting better? A: Yeah, there’s really no easy answer to this question. Alex’s moods vary from day to day, good and bad, up and down. The term “getting better” is somewhat inappropriate here and can be frustrating. Hint: Perhaps a more appropriate question might be “have you found anything that makes life a little easier for him?”

5) Q: How’s school going? A: Um, usually not so good, but we’re working on that, thanks.

6) Q: How are you doing? A: Do you really want to know?

7) Q: Do you think Alex will ever be cured? A: Autism is not a disease, therefore this question is moot.

8. Q: Have you read that book by Jenny McCarthy? A: For the 50th time, yes. But please understand that she is a Hollywood mother who is not a doctor, and whose credibility has been questioned over and over again. Love her heart for her son, but take her advice with a grain of salt, people.

9) Q: I was watching the news last night, and they featured kids with autism, did you see that? A: No. No, I didn’t, because the news has their own agenda and only about 10% of what they feature happens to be valid. Not to mention the fact that I live this stuff every day. I don’t need some clueless broadcaster telling me about Autism. Hint: This answer applies to all the articles and other features that people either ask me about or give me. Trust me, I do my own research. I don’t have time for every article everybody finds on the topic, but thank you for your effort!!

10) Q: So what do the colored puzzle pieces on the Autism ribbon mean? A: The colored pieces of the Autism “puzzle” ribbon represent the fact that Autism affects children all over the world, of every shape, size, and skin color. It does not play favorites. The puzzle theme itself represents the nature of Autism, and how we have yet to put all the puzzle pieces together to figure out what causes Autism, and why its numbers are affecting our children at such an alarming rate.

11) Q: Why do Autistic kids like to line toys up? A: I honestly don’t know. I personally find it kind of cool.

12) Q: (From my husband): Do you need me to come home early today? A: Are you joking? YES. Every day.

13) Q: I have some experience with kids; maybe I can take your son sometime for you? A: Bahahaha….I’m sorry, no really, I am; it is SO sweet of you to offer. It’s just that Alex is SO intense, he’s not just like any other kid; you have to get to know him. You want to take my kid for a couple of hours for me? You have to come hang out with us a couple of times and learn his routines first.

14) Q: (To my husband from his place of work) – Why do you have to leave work sometimes at moment’s notice? A: Because I have a special needs kid and my wife is about to have a nervous breakdown.

15) Q: Have you heard about that diet for Autistic kids? A: YES. Many times. In fact, we have Alex mostly on that diet. It’s called a GFCF, or Gluten-free, Casein-free diet, and it does help, to a point. Want to know more? Google it.

16) Q: How do you do this and still have time for everything else? A: We don’t have time for anything. But we still have to do everything. It is what it is.

17) Q: Why can’t you attend fun “kid” events like most other families? A: Because my child will eat your child for breakfast. No, really, this is a whole other blog in and of itself…big events are hard for him; aside from overstimulation and people who don’t understand his unruly behaviors, he does not do well in public situations for long periods of time. Plus, Mommy really doesn’t enjoy the looks of disdain she gets from the other parents who think he is just being naughty.

18) Q: Chicken Nuggets? That’s all he eats? A: Yes, it is. And I am just happy he’ll eat something substantial at all. Some Autistic kids won’t eat. Mine is healthy and thriving on DinoBuddies chicken nuggets, and that’s just fine with me. Hint: Please don’t tell me about how your parents made you eat what was put on the table or you didn’t eat when you were a kid. That’s not helpful, and all it does is make me feel bad.

19) Q: Is he like this all the time? A: No, he’s very calm when he sleeps. 😉

20) Q: Why are there padlocks on your refrigerator? A: Because Alex is very fond of cooking. He especially likes to break open eggs all over the kitchen and in the refrigerator. Fun for Alex, but no fun for Mommy to clean up. Then there’s yelling and crying and Mommy’s unhappy. And when Mama ain’t happy, ain’t nobody happy.

So there you have it, friends. 20 honest answers to 20 honest questions I get on a regular basis. Hopefully it brought you a little laughter and maybe a lot more information, without offending you!

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Autism and Cats

I realized this morning that sometimes speaking to my son is very similar to attempting a conversation with my cat. I can tell that both are very intelligent, and I’m pretty sure they understand the basic idea I’m trying to get across, but we just don’t speak the same language, and sometimes this causes a major meltdown. For example:

Alex (my son): Want Eat?

Me: <searches through freezer for Dino Buddies Chicken nuggets, the only substantial thing he will eat for Breakfast, lunch and dinner> Oh no, I’m sorry buddy, we’re all out of Eat!

Alex: Eat? Eat?! (minor distress begins, whining ensues)

Me: Sorry, honey, Mommy doesn’t have any “Eat” and Daddy took the car today…can I get you some crackers or something else til Daddy gets home?

Alex: <throws body around, tantrum begins> Ahhhhh-ahhh-ahh EAT??

Me: Honey you need to calm down, it’s gonna be ok; look I have crackers and fruit snacks…

Alex: <screaming now> NO? WAHH I want eat?

Screaming, crying and convulsing body make their appearance while I try to maintain damage control and keep him safe, all the while saying “I’m sorry, honey. I’m so sorry…” The crying finally subsides and he looks at me with those big, beautiful eyes, filled with tears and misunderstanding, and softly, pleadingly says, “Eat?” My heart breaks for him when I tell my sweet boy there’s no “Eat” in the house.

Begin cycle all over again.

So how does the cat factor into all this? Well today I couldn’t find the cat food. The cat was hungry, so he begins to Meow incessantly.

Cat: Mrow!

Me: Ok, I’m looking for your food, buddy, just a minute, I know it’s around here somewhere <searches through house>

Cat: MEOOOOWWW!

Me: Yes, I know, I’m doing the best I can, I know that extra bag is here somewhere!

Cat: ROOOOOOWWWRRR!!

Me: <frustrated after searching for a goood 20 minutes> I can’t find the food, bubby, but I can get you some water…

Cat: Mrowr. (Unhappy kitty look)

Me: I’m sorry, I’ll have to go buy some after my appointment today.

Cat: <softly, pitifully) Mew?

Me:<feeling defeated> I’m sorry kitty-cat, I’ll be back in a while =(

Is it just me, or is anyone else seeing a pattern here?

Basically, it doesn’t matter if I can’t find the danged cat food or the Dino Buddies chicken nuggets, because my cat and my boy are going to throw tantrums, then eventually give in to sadness and malcontent that makes my heart hurt. All because we couldn’t communicate effectively.

There is a boook out there entitled “All Cats have Asperger Syndrome” (http://www.amazon.com/All-Cats-Have-Asperger-Syndrome/dp/1843104814/ref=sr_1_1?ie=UTF8&qid=1322943490&sr=8-1) and another that claims “All Dogs have ADHD.” (http://www.amazon.com/Dogs-Have-ADHD-Kathy-Hoopmann/dp/1843106515/ref=sr_1_2?ie=UTF8&qid=1322943490&sr=8-2) I’m not so sure they’re that far off from the truth 😉

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