Wednesday, November 30, 2011

Team JD Raises $1500 for Autism Speaks!

Thank you! Thank you! Thank you! A few weeks ago our family participated in the annual "Walk Now for Autism Speaks" in Orlando. This was our second year fundraising (although only our first year walking because in 2010 I had emergency surgery a week before the walk!). I can't tell you what an amazing experience it was. Team JD brought in more than $1500 for autism research and awareness - WAY surpassing our goal of $500! This wouldn't have been possible without the donations of our friends, family and coworkers who go out of their way to support us not only through the walk, but every day as they follow JD's journey.

Being there with the thousands of families like ours was so peaceful. There were no stares, no excuses, no awkward moments - just understanding and love. As we walked around the lake at Cranes Roost Park on a beautiful sunny day, it reminded me that no matter where I go, or what I do, autism is always a piece of me. Autism may have made my life a little more difficult, but what I received in return was way more valuable - an extended family of people all over the world who have children just like mine. It seems like each week I meet someone new who has been affected by autism and there's an instantaneous connection. I'm proud to be an autism mom - it's not easy, but it's worth every moment!

Tuesday, November 15, 2011

Is it Destiny?

Since JD's diagnosis a year and a half ago I've heard a certain line many times - "God gave you JD because you're such a wonderful mom and he knew you could handle it." At first it made me cringe inside and out, like it was the stupidest thing anyone ever said. But a year and a half later I've kind of come full circle thinking maybe they're right.

See, part of me wonders if it really was destiny. I was telling a friend at work today that my ideal job would be to lead the diversity and inclusion efforts at our company. Of course I have a passion for it because of JD, but I think that passion came way before he was even a "twinkle in my eye" as my husband says.

I can pinpoint it as far back as 11 years ago, when I was a freshman in college at the University of Florida. There was a class called "Exceptional People in School and Society" and I can truthfully say it was the most life-changing class I have ever taken. I took it because it was supposed to be an easy A, but what I didn't expect was how much I would learn.

The class was designed to put yourself in another person's shoes - literally. We learned sign language (I can still sign, "You are so beautiful to me!"), and spent an entire class in silence. We had to walk around campus blindfolded to experience life without sight. We volunteered with underprivileged children in the community, playing games and singing songs, keeping them off the streets. There was so much more, but what it all came down to was this - these exceptional people are PEOPLE, and they should be treated with respect, dignity and kindness, just as you would treat anyone else.

Who would have known that a class I took when I was 20 years old would have such an impact in my life a decade later? Maybe God was preparing me, not only to take care of my little boy, but to help the world understand and accept these Exceptional People. I feel so thankful to know my passion, and to live it first-hand, because some people search for it their entire life.

Saturday, November 12, 2011

Miss Katie - Our Guardian Angel :)

"We are each of us angels with only one wing, and we can only fly by embracing one another." ~Luciano de Crescenzo

There are certain people who have come into my life that I consider guardian angels. These are people who have had a profound impact on who I am, who I feel that God sent to me (or vice-versa) when I needed them most.

A little over a year ago I randomly went on Craiglist looking for a part-time nanny that might have experience with children on the autism spectrum. I was freelancing at the time and just needed someone to watch the kids while I worked in my home office. Normally I don't think I would have ever looked at Craigslist for babysitting options, but for some reason that day I figured I'd take a look.

I searched the term "nanny and autism" and ONE result came up. It was for a young lady named Katie and she had moved to Orlando from Wisconsin with a background as an ABA therapist assistant. She was looking for a part-time nanny position and immediately I called.

We must have talked on the phone for two hours that night. I remember sitting in my bed, telling her all about our family and JD's recent diagnosis. Kyle wasn't even a year old yet, not even crawling, and JD was in therapy everyday.

Katie and I clicked from the very first moment - it was like we had known each other for years. Later that week she came over, met the kids and started working for us. At that point in time I had no idea what kind of impact she was going to have in my life.

When Katie started JD wasn't speaking, couldn't run, swing or go down a slide. When you fed him you could only put a few little pieces of food on his highchair at once (NEVER different foods) or he would throw them all over. He would have terrible tantrums, hit, pull hair and scream. NONE of it phased Katie. I had never met anyone so patient and loving as her in my life. We would sit and chat each day and became so close. I learned about her life, she learned about mine and it was like having a best friend spend each day with me and my kids.

Last October I was really sick - I was in and out of the hospital with gallstones. In November I had to have emergency surgery and at 1:00 a.m. Katie drove 45 minutes to our house to stay with our children for three days while I was in the hospital. I never had to worry for a second that my kids were being taken good care of. She knew their daily drill - and all of JD's routines. The most amazing part was that during the weekend I was coming home, we were scheduled to have a huge carnival birthday party celebrating Kyle's first birthday and Ashley's fourth birthday. Katie put on the entire show - organized all of the decorations, the party favors, the face painting, the organization and clean up... everything. I was stuck on the couch, so thankful for having her in my life.

That was a year ago and I can't even begin to list all of the things Katie has done for our family, and for me, since then. She is the one person who has been there, day-in and day-out, right next to me and Jason, helping us raise our kids. She's been with us through therapists, schools, moving, even marriage drama - and never skips a beat. She loves my children like they are her own and they love her just the same. She is like another mother to them and I couldn't be more thankful for that.

Today our family participated in the "Walk Now for Autism Speaks." Katie was right there with our family, proudly walking on behalf of JD. And while I took some pictures of her with my kiddos, it reminded me how blessed we are to have her in our lives.

Katie - I could write a novel about how you've changed my life. Your love, patience, kindness and spirit are unwavering and I can't thank you enough for all that you do for me, Jason and the kids. I look at this picture and it makes me smile knowing that you are our guardian angel - God sure gave me the best one he had!

I love you Katiebug!!! ~Linds

Happy Birthday Kyle!

Today was an exciting day, not just because of the autism walk, but because we're celebrating our youngest child's 2nd birthday. Kyle is the sweetest little guy but I can already tell he's going to give me and Jason a run for our money when he's a teenager... he's the dare devil, the rule breaker, and the pretend crier in our family. Gotta love it!

Kyle's 2nd birthday is kind of bittersweet to me because it reminds me that JD was diagnosed the day after his 2nd birthday. Looking at Kyle and his development, it's like day and night of JD's when he was that age. Kyle is such a chatterbox and wants to be in the middle of everything. He's fearless, all boy, wants to wrestle and laugh and is so interactive. The day JD turned two I remember how overwhelmed he was at his birthday party. He didn't talk then and I could tell that he would have done anything to run and hide away from all the activity. I didn't know at the time that it was autism, but now looking back I wonder how I didn't see it sooner.

This is hard to say, but I'm so relieved that Kyle isn't showing any of the signs for autism. I worry each day about it and I probably won't stop worrying until he turns three, by then I think we'll be in the clear. It's also hard to say that I worry about the day that Kyle will be developmentally "older" than JD... I know that time is coming soon as they're about the same developmental age now.

As a parent of a child on the spectrum I feel like just when you think you've conquered one issue, another comes up. But Jason and I are so proud of all three of our little ones and wouldn't change a thing! Happy birthday baby Kyle - I can't believe it's been two years already!

Friday, November 11, 2011

Countdown to the Walk!

I'm SO excited - tomorrow is the Autism Speaks walk! Our team has raised $865 and I'm hoping we can hit our goal of $1000 over the weekend. I'm getting a little nervous, not about the crowds or the expected chaos of the event, but about the emotions I will feel surrounded by so many other families and children struggling with this disorder. Autism can make you feel so alone at times, like no one could ever understand it, but I'm actually really looking forward to going to an event where kids like JD are the "norm" - where I don't have to worry about the stares, or whether he's going to have a meltdown. I'm so proud of my little boy and the walk is just one little way to show it! Go TEAM JD!!!

Wednesday, November 9, 2011

Amazing Video!

I don't usually like to watch videos about autism because I'll end up crying, but this is a really good one. It's amazing because each child with autism is so unique, yet as parents we face the exact same challenges. If you have a few minutes, I would really love if you would watch this...

Saturday, November 5, 2011

A Hug Goes a Long Way

I think Shel Silverstein had it right when he wrote this poem. Anyone who knows me knows I LOVE to hug. I would hug everyone if I could. I just think it's one of the best gifts you can give someone. So my blog tonight is about how much a little hug can mean in the world of inclusion...

Tonight was a great night. Jason and I took the kids to dinner at one of our favorite places - the Joe's Crab Shack by our house has this awesome pirate ship playground where the kids can run and play while we relax and eat. The funniest part is that I hate seafood, however I go there at least twice a month because it's like free babysitting.

While we were there we randomly ran into some friends of ours who, like us, have three kids ages five and under... pretty uncommon nowadays. I love spending time with them because they aren't even slightly phased when my crazy children and run around screaming. It's almost easier when all six of the kids are together because they just entertain each other.

But the best part was when my friend's little boy, who is the same age as JD, came up and gave JD a BIG HUG when they saw each other. JD smiled from ear to ear and it made my heart melt. Watching JD grow up and make his own little friends just makes me so thankful for the innocence of little children. They don't see his autism, they just see another friend. That is the true definition of inclusion.

When I grew up I lived in a bubble - I wasn't really exposed to anyone different than myself or my family. We were standard upper-middle class WASPs (White, Anglo-Saxon Protestants). I never realized that there were so many different people in the world with so many wonderful things to learn from.

As a parent of three children, one having a disability, one of the goals I strive to do each day is teach my children that there are so many amazing, different people in the world. People may look different, speak in different languages, have different abilities, but at the end of the day I want my children to know that everyone is the same inside - and that everyone should be loved and respected.

So to my friend's little boy... you'll never know how much that hug meant to me, it's makes me so happy to know that you're JD's friend. It's the little things that mean so much! :)

Tuesday, November 1, 2011

I Love This!!

I love this picture... I wish I could tattoo it on my forehead! Not just for moms with kids who have autism, but for every mom. The worst part is that I'm sure I was that person at some point in time, before I realized that raising kids was nowhere near as easy as I thought!

I think every mom feels this way at some point in life - when you're in a store, restaurant, walking into daycare - and your kid throws a tantrum and there you are, feeling the STARES coming from all around.... Deep Breath Now! I hate that feeling and when you have a child on the autism spectrum you get it any time you go any where.

I made the decision to take the kids to a fall festival at work last week. I knew it wasn't going to go well, but I figured it couldn't be too bad... LOL. The day started with JD not having ANYTHING to do with his pirate costume, it's that rayon material so I'm sure it totally freaked him out when it touched his skin. Strike 1 - it's ok - I've got Plan B - Halloween shirt with a skull on the front - good thing mommy is always prepared! :)

We get to the festival and there's a guy twisting balloons. JD waited in line patiently and I was impressed. Then came the carnival games... oh lord, I laughed as the nice lady volunteering tried to explain to my three year old son that he had to stand on the taped line to throw the little baggies into the hole two feet away. I let her make the effort, hoping he would somewhat listen, but he just did his own thing, running them up and throwing them directly into the hole... she was fine with it - we're still going strong!

Then comes the face painters... let the fun begin. We ask JD if he wants to get his face painted and he says yes, but when he gets in the chair he FREAKS out as the lady starts putting paint on him. The screaming and crying begins and the poor lady looked at me like, "I'm SO SORRY - I swear I didn't hurt him!" I explained to her that he has sensory issues so he probably hated the feeling of the paint on his face. We moved on... ok Strike 2... no worries, I can handle this.

Next stop was walking through the different "haunted houses" on each floor. Of course I pre-walked them before he got there to make sure he'd be ok and not terrified, that there were no loud noises or people jumping out. We were good to go on four out of five, so off we went. Now - I work on a five story building and each of the haunted houses started when you got off the elevator. JD HATES elevators, so as we got in he cried a little, but as we went up each floor it got worse and worse. Finally at the top floor a lady turned around and asked me, "What did you do to him?" REALLY???? ARE YOU SERIOUS??? That's when I want to hand her a big sign that says, "dumbass - my child has autism - get over it." But I nicely smiled and walked away, saying he doesn't like elevators. Strike 3... ok, mommy is ready to go home.

I feel like this happens in some shape or form every day. But you know what, it doesn't make me mad, it makes me realize just how oblivious people are to the reality that not everyone in this world fits into the perfect little box. I'm just glad that I'm no longer that person. If I see a child having a tough time, or even an adult needing help, I don't judge them for being different. I'm just happy that they're here because our world would be a really boring place if we were all the same!