mommy4autism

Just another WordPress.com site

This is not a real post…really. ;)

To coin a popular phrase from one of my favorite bloggers, this is not a real post. Mostly it’s an apology with a side of excuses, drenched in promises and a “teaser” on top!

Truly, I just wanted to reach out and apologize for slacking, and that I will be back up and blogging soon, with all sorts of stories, great lessons and exciting moments to share, including the tale of our 2nd annual “magical” trip to Camp Meadowood Springs!

I have really good excuses for flaking, by the way, including surgery on my lower back (resulting in weeks oImagef recovery) and a sprained ankle (another sneak peek at what’s to come)!

…Okay, so I’ve *gotta* give you one quick tidbit to keep you coming back: I do want to say that my very hyperactive, autistic son, Alex – who is now 6 years old & 65 lbs – has become SO gentle, sweet and careful when he’s around Mommy, because “Mommy hurts.” And he cuddles into the corner of my bed every night to be near me. It’s pretty great.

More to come SOON, as I start getting back to my old self 😉 I PROMISE.

~ Kristi ❤

^ ^ Me after my surgery, ^ ^

w/Boo-boo bunny (the family healer).

Leave a comment »

Oh, Happy Day

Today, as recent as an hour ago, I hated my life. After mopping up a flooded bathroom floor for the 3rd time this week, trying to avoid being smacked in the face, failing to rescue a picture frame from destruction, barely rescuing a crystal vase from a similar fate, and dragging my crying, flailing, 60-lb 5-year-old son across the room to keep him safe, I was ready to give up.  I literally wanted the earth to just open up and swallow me whole.

Right now, my autistic son is going through a state of major regression, which basically means that he lost skills and/or functions that he had as recent as a week ago.  We were warned about these periods of regression – how all of the sudden one day you just have to start over, pretty much throwing away everything that “worked” before & develop new strategies, create new boundaries, figure out what works NOW. Because the other stuff doesn’t work anymore.

Let me give you a better picture: for those parents out there who have 2 or more children, do you remember what it was like figuring out that what works on one kid doesn’t necessarily work on the other? Maybe you have one child who would burst into tears with a harsh look, but the other was so defiant that stronger measures had to be taken. Or maybe one kid breezed through Math while the other needed tutors, extra homework and constant monitoring just to get a C. Imagine all of these things all balled up in one kid, and changing every so often during childhood.

Don’t get me wrong, my boy is smarter than ever; I’m positive there are amazing things going on in his mind…It’s just that he struggles with sensory issues that cause his body to get in the way of his mind. And his body is freaking out again, except this time he is heavier, taller, and stronger. We thought we had finally overcome this obstacle, but we’re back to square one.

And my heart breaks daily because of it.

So, I cried today. And I screamed. And then I hated myself for screaming and crying. And I hated that I felt like a bad parent. I hate that I love him so much and can’t help him. So I guess you could say that this was a BAD DAY.

Still, even in the midst of my absolute destruction today, I remembered a music video that always brings me joy. It just happens to be a song called “Oh Happy Day,” and it is featured in the movie “Sister Act 2.” So I got on my computer, and I played the video of that song. And I cried, and then I smiled, and I sang, and then I cried some more. Then it hit me. I know why I love this video *so* much. It’s because of the progression of emotion that unfolds during the course of the song.

See, in the beginning, the teenage choir and their soloist appear obviously unhappy while singing those words. Oh Happy Day.

Haha, they WEREN’T HAPPY. But they still had to sing those words. They had to keep singing that stupid song, even though they didn’t feel anything like its intended message. But then something wonderful happens…someone encourages them, sorta whips ‘em back into shape, reminds them of why they’re doing what they’re doing, and BAM. All of the sudden, that soloist starts singing with more intensity. And that choir starts getting more confident. And that music builds and builds, and it feels like they fight the world, singing with everything they have, until they are finally bursting at the seams with JOY. OH Happy Day!

That’s what it’s about, that’s what we do, THAT’S how we FIGHT when we have days like this. Just keep singing. Just keep moving. I don’t have to put on a happy face at first, but when I keep singing and fighting, and I remember why I’ve been chosen especially for this job, that sun begins to burst through the clouds and I swear that Heaven shines down and the angels shout it, too: OH HAPPY DAY!

And then it all falls into place. And I watch that stupid video over and over again. And I calm down, take a deep breath, and move forward. And my son visibly gets a little calmer, too.

So next time you’re hoping that crawling under a rock will help your mood, I dare you to watch this video instead and not have a big fat grin on your face by the end of it. In fact, I double dare you 😉

Click Here & enjoy: “OH HAPPY DAY!” – Sister Act 2

UPDATE: Alex has begun to stop and watch this video *with* me! You wanna know the best part?  He sings along =D

Leave a comment »

Angel

When I was a girl (and even as a young adult), I used to write poetry when things in my life were going badly. I poured my heart out in ink onto a piece of boring notebook paper. All the injustices in the world, all the heart-breaking middle school romances that tore my world apart…they’re all there, on those old, tear-stained pieces of paper.

I was quite the drama queen with a pen. But I had good reason to be.

All my life I’ve rooted for the “little guy,” fought like hell for true love, and offered kindness to the hateful. I befriended people who were the hardest to get along with…because they needed someone. I believed I could save people, thought I could reach people who didn’t want to be reached. And I succeeded in some cases, though my heart still aches for those I lost.

I cried a lot. During the hardest times in my life, I think I cried daily. People called me oversensitive, said I needed to “grow some skin.” My mom told me that my sensitivity and gentle spirit was an incredibly important part of who I was, and is now ultimately, who I am today. But I just felt broken, like there was nobody else out there in the world that felt what I felt.

One day when I was 21, still crying, still broken, and once again betrayed by someone with whom I thought I had made a difference, I made a phone call to my brother – probably the only other person in the world who truly “gets” me – and told him what was going on. I told him that I felt sort of like an angel in a world filled with darkness and lost people. (Please understand that, by “angel,” I meant a loving person, with honest motivations and a good heart, reflecting a purity in spirit that much of the world leaves behind in their childhood. The concept was not at all founded in arrogance.)

It’s just that I quite literally felt like I didn’t belong in this world, and that was a dangerously lonely place to be. It seemed that, for every one person I helped, there were a thousand others that made breaking my heart into a game. I was constantly questioning how the world could be so mean. And as I cried to my brother that day, I somehow communicated the fact that “I just don’t feel like there’s anyone else out there like me.”

My brother stopped me right there, and said “Kristi, there *isn’t* anyone out there like you.” He also alluded to the fact that I sort of was like a modern day angel, which was a good thing. I spent more time in tears, but they were tears of relief – I finally felt like someone heard me, and helped me to see that there was nothing wrong with me. I knew then that I could face the world with my head held just a little higher. I changed that day, mostly for the better, but my heart had to harden a little in order for me to move forward.

So now I am 34, and many things have happened since that conversation with my brother.  It is true that, no, there isn’t anyone out there exactly like me. But there are good people in the world, other modern-day angels who care as much as I do, and long to make a difference. I have also come to terms with the concept that, during my darkest hours, when life was the most painful, I was never alone. And that those same feelings that seemed so awful now serve a purpose for good.

You see, I have been in “training” to be a special needs mom in me since I was a very little girl, which means that I have been conditioned and prepped to love children both children and adults who society labels as “difficult” people. And I have been groomed for the job since I could first speak for myself.

As a child, I suffered greatly for this. As a teenager, I cried daily for this. As a young adult, I was used, abused, and sucked dry by people who were drawn to my passion, my optimism and the light I “cast” upon shadows. I was ridiculed when I loved on those who were considered “undesirable” by others. And even as a grown woman, I still give a bit too much of myself. All anyone has to do is ask it of me.

But now I know why.

As a mother, I have finally realized that all of these hardships have added tools, year after year, one at a time, to my toolbox as a special needs parent. The teardrops which caused ink to smudge on those old poetic pieces of notebook paper were not shed in vain. They are marks of courage and expression, war wounds earned during very strenuous times.

I have an autistic child. And he needs me. And God knew that my son would NEED me to be prepared for him before even I knew I’d even be having a child someday.

In fact, God gave me a gift. I am special, I am necessary, I am STRONG, I am an emotional WARRIOR, still advocating for the little guy – MY little guy. But it’s not a curse.

It’s a reward.

It’s a reason.

It’s an honor.

My whole, dramatic, sensitive, crying, fighting life finally makes SENSE. And *that,* my lovelies, is why I keep on writing. No more tear-stained notebook paper (Thank God my keyboard is pretty smudge-proof). No less injustice in the world. No shortage of lost people. But now I have a reason. Now I have a way. Now I have focus and direction.

So look out, world, you have an angel to contend with. The halo may be a little twisted, but these wings were made for flapping – and passing wings on to my child is just the beginning…

Leave a comment »

Yes, Love really does conquer all

A couple of posts ago, I featured a YouTube video about a little girl named Maddox, who has Down’s Syndrome. When I did that, I explained a little bit about how certain aspects of the video had really affected me personally. But there was one quote from the video that still touches me deeply, and, at times, brings fresh tears to my eyes. That quote from a little girl’s Mommy to the world simply said:

“I want to fall in love.”

Why did that affect me so much? What was it about such a simple statement that haunts me every day? It is because my son also has a disability that makes him different from his peers. My five-year-old son has Autism, and is currently struggling to make conversation, along with some other key life skills that typically developing children have mastered.

My point in saying all of this is that we don’t know what level of disability he will have as he grows older. See, Autism is like a rainbow…it’s made up of all these different types of kids who have autism, but none of them are ever completely the same. That’s why Autism is typically referred to as “Autism Spectrum Disorder” (ASD). Some kids end up being very high functioning and live out a pretty normal life after a certain amount of therapy. Others may never speak, or learn to communicate in an effective enough way to live on their own.

When my son was first diagnosed, at age 3, his doctor commented that she had seen many children with similar behavior who had gotten to about third grade and ended up being a lot like a typically developing kid, just with some “quirky” habits. But, although Alex has achieved many great things in the last 2 years, he is not yet on track for the road we were hoping to travel.

Now, I may be worrying over nothing, but essentially I fear the great unknown. And the great unknown means that I don’t yet know if Alex will be high-functioning or if he’ll be living with us for much or all of his life.

And my greatest fear is that, if he is high functioning, I don’t know if he’ll develop the ability to fully bond with, or relate to, his peers. A lack of empathy is a well-known symptom of the high functioning form of Autism called Asperger’s Syndrome, where communication develops and intelligence is usually high, yet the individual fails to grasp some key elements that are important to relationships, such as the ability to empathize (or literally understand) the way someone else is feeling. Appropriate social interactions can be taught, but people with Asperger’s may never feel fully connected to the rest of the world.  Research tells us people can still *feel* their own emotions, but they often don’t comprehend why someone else may be feeling a certain way.

The concept of Asperger’s used to break my heart (keep reading to see why it “used to”). The thought of my son not being able to empathize with others, or develop meaningful relationships absolutely terrified me. There’s a reason for this…I am personally an incredibly emotional person, and I often take time to spend time with others who need to talk. And if I can empathize with them, if I can share my experiences that are related to theirs, I do. That’s my heart, and it’s just a huge part of who I am. I believe in love. Compassion is very important to me. It’s why I started this blog.

So how does this all relate to a little girl with Down’s Syndrome who wants to fall in love someday? Well, it’s simple:

I want my son to fall in love one day.

I want him to feel love, and to fully understand the love he is given in return. Someday I want him to relate to a woman enough to hold her when she’s crying and laugh with her because she’s smiling. And I am scared that he may never truly understand that kind of love.  And I can’t wrap my head around why God would bestow such a thing on any human being. I kept racking my brain, trying to figure out what people with Asperger’s are here to teach us, and how they live with never really connecting with people.

Well, I know a man with Asperger’s who was diagnosed very late in life (which is common). I finally decided to speak with him, to try to get a better understanding of how it felt. So I asked him about empathy sort of sheepishly, and he confirmed that it was true, he grew up never really feeling like he connected with anyone, and that it was a hard thing to comprehend the actions and emotions of others. (My heart kind of sank when I heard this, because I was kind of hoping it wasn’t true.) But then he said,

“Until I met my Wife.”

And now I know that there is no need to be afraid of the future, or what kind of Autism my son might grow up with. I know that there’s no need to fear individual symptoms like the lack of empathy, and that there is so much hope and love and compassion out there, that there’s enough for everybody. *Especially* for those people who have a hard time understanding it.

And wouldn’t that be the best way to find love? To one day meet someone who finally triggers a response in you that you’ve never felt in your life? That, my friends, sounds like the true definition of a soul mate.

Research says the odds are stacked against us. I say that Love conquers all.

_______________

Note to readers: Please remember that the symptoms of Asperger’s syndrome described here are based on my simple research and may or may not apply; note the use of the words “may never connect” and the like, which means that the opposite may also be true. There’s a very important saying when it comes to Autism, and it goes like this: “If you’ve met one person with Autism, you’ve met ONE person with Autism.” Thanks 😉

2 Comments »

NO SLEEP TILL…

I promised myself I’d blog more for our friends & fans, but I feel like I’m dealing with “Blogger’s Block” or something.  So, in true writer’s fashion, I figured I’d just start pouring out all the nonsense in my head in a brainstorming-stream-of-consciousness way in the hopes that a decent piece of reading would come of it!

Mostly, I’m struggling these days. I want to say everything is great and to be positive about our experiences. I want to say that my son is the picture of Autistic perfection (um, is that even a phrase?) and that he is moving forward at such a wonderful rate that I may have nothing else to write about. But I would be lying.

The truth is, we’re in a stage of regression. New to Autism?  It means that you take 2 steps forward, rejoice, and then all of the sudden you’re 3 steps backward. And it sucks, because you thought, you hoped that you were really on a roll and that your child was doing better. And it doesn’t mean he isn’t. It just means that right here, right now, we’re doing a little worse instead of a little better.

So, obvious question…Why? Well, among other things, I’m struggling because Alex’s sleeping habits have changed. I don’t know what’s wrong, I can’t explain it. All I can say is that he doesn’t want to sleep in his own bed anymore. He wants to sleep with us. We have tried taking him back and taking him back (to his own bed), over and over, like good disciplinarian-type parents should do. But one night, I looked in his eyes and saw pure, sheer terror. He was afraid. It was then that I knew in my heart it would be ok to let him sleep with us for a bit, because something’s wrong.

Nevertheless, our queen sized bed is not big enough for my 6’2″ husband, my 4′, 57 lbs child and myself (you don’t get the pleasure of my measurements). So I had this brilliant idea to add a twin aerobed mattress on one side of our bed.  My hope was that we could deposit him there when he fell asleep, then later, when he woke up (in keeping with my nightmare/fear theory), we would be right there to console him.  Well, it’s not all working out as perfectly as I’d hoped.

As long as we can get our son to sleep (like on the couch) for plenty of time before we put him in the Air bed next to ours, he will sleep there…until about 12:30 am. And then he climbs right into bed with us. Most of the time he talks (meaning he is repeating, mimicking or reciting things he has heard that day from memory) or is basically awake until between 2 – 4:00am, then will fall back to sleep just before Daddy has to get up to go to work. And then, of course, he’ll be wide awake ’round 5:30, which makes this nite owl very unhappy.

And people wonder why I’m not having more children? I’d be a zombie. Permanently.

So, for those of you who are wondering, there are multiple things you look at when you have a sleepless child who cannot communicate well…is he having night terrors?  Nightmares? Seizures (prominent and easily missed among autistic kids)?  My husband thought he felt Alex twitching a lot the other night, so you can imagine how I am dealing with that too.

You may read this and think, 1) “oh that’s just a phase, it will pass” or 2) “oh, they just need to put their foot down and make him go to his own bed.” Well here are some answers to you about why I am so worried and upset by this:

1) My son is 5 years old and Autistic. He has been eating *only* Dino-Buddies Chicken Nuggets for meals for 2.5 years. We were hoping that was a phase, too.

2) My son is 5 years old and Autistic. If you would like to come over and “put your foot down” for me and make him comply, you would be most welcome. Bring your caffeine, though…gonna be a long night(s).

Anyway, yeah, I know, “this too shall pass.” I get it, I understand how this works, and yeah, I know I’ll get through this. But I lost a lot of sleep with stupid antics in my youth, so this is hard for me. I have to tiptoe through my room at night to get up and pee. I have to get ready for bed early enough so that all I have to do is crawl into bed as quietly as possible so as not to wake my son. I’ll spare you the details, but imagine a husband & wife trying to gather any sort of alone time in the middle of all this? Not so much.

So anyway, our family is not sleeping well, due to our sweet little boy because of God-knows-what. And it’s been this way for about a month. So if you’re one of our friends who sees us out & about, please award us a little extra grace if we get snippy or emotional. Sleep comes in small quantities here.

2 days ago, I fell to my knees, placed both hands on Alex’s little twin Aerobed next to our big bed, and all I could do was pray. And maybe that’s just the best thing I can do right now.

In closing, I guess if I could have one wish granted of any I desired, I would just want my autistic son to be able to tell me what’s wrong, or what’s right, or even just what’s what!  I want to do what is right for him, and if that means getting him back to his own bed, or letting him sleep with us for a while. I don’t care. I just wish I knew.

I just wish I knew.

P.S. Please tell me someone caught on to the Beastie Boys reference in the title…?

P.P.S. Brrrraaaaiinsssss…

2 Comments »

Our top 21 Best Special Needs Parenting Moments of 2011

Our top 21 Best Special Needs Parenting Moments of 2011:

1) In January, Mommy & Daddy take the family on an impromptu beach trip, and Alex discovered his love for the ocean.

2) In February, Daddy taught Alex about his other love in nature: Snow

3) In March, Alex really started using the best learning tool we’ve ever found: The Ipad.

4) Also in March, Mommy put together a nice, new wooden train table for Alex’s Trains and tracks. Alex proceeded to use the floor instead!

5) In April, Mommy organized Team Alex for the 9th Annual ASO Autism Walk-a-thon. By the time the walk came, Team Alex had 52 walkers and had raised over $2,000 for the Autism Society of Oregon! The increase in support was an overwhelming 800% from the prior year. Because Alex had a hard time walking, Daddy walked with Alex on his shoulders.

6) Also in April, Alex attended his 1st real Easter Egg hunt at a church who provided a special area for kids with special needs.

7) In May, Mommy started the “Mommy4Autism” Blog you are reading today!

8) In May, Mommy taught Alex to make cupcakes; he is such a great helper and he loves to bake. Only problem is that he really, really, likes to break eggs open. Everywhere.

9) Also in May, Daddy taught Alex to say “I love you, Mommy,” just in time for Mother’s Day.

10) In June, Alex got the chance to attend Vacation Bible School at his very own church, with Mommy and his favorite babysitter, Illy, close by. He only made it about 3 days but he loved the music and all the games!

11) In July, while Daddy took Sissy to camp, Mommy and Alex bravely walked to a neighbor’s house to celebrate Alex’s 1st real Fourth of July experience (with fireworks). Alex didn’t like to set off the fireworks, but he liked watching Mommy and playing with the big kids’ motorbikes! He even made friends with a couple little kids from the block!

12) August was a big month! Mommy, Daddy, and Alex (plus Illy) took a trip to an Autism Immersion Camp at Meadowood Springs! What an amazing adventure Alex had as everybody learned more about each other. This is where we learned the “hands to face” technique, and acquired the connector, both of which have been amazing communication tools for Alex!

13) Also in August, during family time at the camp, Mommy strapped a life jacket on Alex and took him swimming and wow, we discovered we have a little fish for a son!DSC09310.JPGThe kid doesn’t technically know how to swim, but you could have fooled us! Alex also adored riding in the canoes with Daddy and other friends!

14) Because of our experience at the Autism Immersion Camp, Mommy learned a very important lesson: to calm down, in order to help Alex calm down. Daddy quickly followed suit and the results have been great.

15) In September, Alex started his first day of Kindergarten! This was exciting, butDSC09660.JPG also disheartening as it became clear that he may not have been placed in the proper program for his needs. Mommy began the process of personally evaluating his situation, entering the classroom and speaking regularly with the school.

16) In October, Mommy carved 4 pumpkins by herself, trying to get Alex interested in the Halloween tradition, to no avail. Later, Mommy braved the craziness of a pumpkin patch for Alex (in the pouring rain), who adored the Hay stack pyramids and the Corn box (like a sandbox, but with corn)! He got to pick out a pumpkin while we were leaving, and guess what? DSC00032.JPGWhen we got home, Alex drew out his first Jack-o-lantern face on that pumpkin (with a little help from Mommy) and Mommy cut it out for him. Yay!

17) In November, Mommy took Alex back to the coast for a little Mommy-son time while Daddy & friends worked on the house. It was not the easiest weekend in the world; we both came down with colds. But Alex adored the experience, which included the ocean (his favorite) and a trip to the aquarium to see the sharks.

18) Around this time, Alex developed an absolute adoration for Daddy’s laptop computer and all the wonderful games it had to offer him! PBSkids.org is where it’s at, folks! Mommy’s always on her laptop, so it wasn’t exactly hard to figure out that he’d soon follow suit!

19) December came around and Mommy’s pursuit of Alex’s education and happiness finally made it through to the school system. Along with 6 other “Alex fans,” we faced pretty much all the special ed educators at Alex’s school and finally made the decision that he wasn’t in the right class for his needs. The meeting was amicable and pleasant, which was a relief to everyone I think! He’ll get to start over in a new environment as soon as the paperwork clears in January!

20) Another exciting moment in December came when Alex finally got to join his little friends at church in their annual Hand Bell choir presentation. The bells were color-coded, and he never really stopped doing his own thing on Sunday Mornings to practice. But Mommy was determined, so we practiced every day after school, and Alex played that yellow bell twice on Sunday morning, then even said his name in the microphone at the end of the program! Yay!

340325_2883413683890_1216556390_33214388_1029686634_o.jpg

21) December also brought craft fairs, and Christmas decorations all over stores. Alex decided that Santa and snowmen were pretty cool, as well as all of the sparkly stuff everywhere. He really started to understand the concept of Christmas and presents this year, which was another dream come true for us…he even surprised us further by pointing out Baby Jesus in Mommy’s Nativity Scene.

Th335411_2957045004627_1216556390_33251876_2112514523_o.jpgese are the most precious family & parenting moments from our very difficult year. Mommy and Daddy learned so much about Alex, autism, and maybe most importantly, themselves.

Happy New Year! ❤ Mommy & Alex

1 Comment »

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.

2 Comments »

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!

Leave a comment »

Structure & Chaos

I am the mommy of a child with Autism. You already know that. For pete’s sake, it’s practically the title of my blog site, right? Well, I had to clarify, you know, just in case…

Anyway, now that I’ve reminded you of that particularly important fact, I want to talk briefly about what it means to be a Mom like me. If you’ve read my blog before, you already know that, in general, life is full of ups and downs with special needs kids. You know that we have hard days and then we have days with triumphs that fill us with joy and make us very proud to be the parent(s) of such awesome, unique kids. But there’s something else on my heart today…something maybe a little less joyful, a little more about those hard days I mentioned earlier.

I personally work from home, and so I am home when my son gets home from Kindergarten. Sounds great, right? It’s so sweet that I can be there for him when he gets home. I’m happy that I can be here for him, don’t get me wrong- but there’s more to the story that people don’t often think about. What is it? Structure. All kids need structure, and autistic kids of all shapes and sizes need it even more than most.

Unfortunately, it takes kids with special needs a lot longer to get used to a certain type of structure, and even then, when they do, the whole thing can fall apart in a day because that particular technique simply doesn’t work anymore. Let me give you an example.

When Alex was 3 or 4, I discovered that his special needs preschool was using PECS (Picture Exchange Communication system) to help direct him in activities and communicate with him more effectively. I was ecstatic, because he was responding so well to it, and so I decided to learn how to use the system and implement the schedule and other pieces in our home environment.

I went a little overboard. I’m not gonna lie.

There were pictures for everything, binders full of different types of food or toys, depending on whether he asked to play or snack on something. I converted his toy organization (or lack thereof) into bins, neatly stacked and placed on bookcases, then covered by sheets, so he would have to use the picture to ask for what he wanted. Velcro was my best friend. It was my thought that, because this system had worked so well at school, it was sure to work perfectly at home, too, right?

Well, I was wrong. Or, more appropriately, I was overzealous. Needless to say, I pretty much changed my son’s whole home life organization overnight. Over. Kill. The poor little guy was confused and frustrated.

This is just one example of one time I tried to do something to help add a little structure to my son’s life, like a “Good Mom.”

I will say that I stuck with certain parts of the system, and, over time they did work out to our advantage, but not nearly to the degree I had my heart set on.

The reason I give you this example is that, as noble as our intentions may be, as much as we want to do things with our kids, help them learn, succeed, communicate and lead less complicated lives, parents of special needs kids live a life of trial and error, daily. You never know what’s going to work, or what is simply not working because you just didn’t give it enough of a chance to work.

And some days are heartbreaking, because those things that *used* to work don’t work any longer.

There are still remnants of the PECS system all over the house…and I know that probably the most important thing I could do is re-implement the picture-oriented schedule, but do you know what it’s like to work, try to give your child some quality “together” time, AND develop AND teach a whole system that *may* or may *not* even work to begin with? And then to be able to stick with it even when he isn’t responding makes the whole thing feel so useless.

One of Alex’s therapists once told me that he sees parents try something for so long that they may have been 90% there…that if they had just kept on going on, being consistent with their technique, it would have worked. But we don’t always do that, because it’s disheartening to put so much effort into something that shows no progress over an extended period of time. And so they fail.

So why I am I blogging about this? I’m not sure, maybe just to get it off my mind. Maybe to give you a little “slice of my life.” Probably because I’m feeling inadequate as a mother. But the long and the short of it is that I am exactly that. I am a mother. I am not a special needs teacher, or therapist, or doctor, or specialist in the broad spectrum that is Autism. I am simply Alex’s Mama. And as Alex’s Mama, I have to work a little harder to provide appropriate, successful structure for my son’s home life.

And you know what? That kinda sucks.

Forgive my attitude, but it is, after all, my blog, and I think it’s important for other families to know the additional expectations that lay heavy on the shoulders of a family with a special needs child. I don’t ask for your pity, but I do find that informing people of these kinds of struggles brings a little more understanding into the world.

I feel lonely and lost sometimes. I wish I had all the answers, and I wish I could find a structured plan that would make Alex feel more settled. So many ideas, so many techniques are thrown at me every day, but how can I possibly know which to implement at which time?

The answer is that I can’t, of course. So I just try things one at a time, instead of plastering the entire house with Pictures & Velcro (which ruins paint, by the way) and changing his whole routine overnight. See? I’m learning, but I’ve got a long way to go.

So, I’m just trying and I’m loving him the way God taught me to. But it’s a good thing I’ve got a cheering section to keep me going!

(P.S. I’m cut off from buying any more Velcro. No seriously, it’s, like, an obsession.)

Leave a comment »

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 😉

Leave a comment »