Wednesday, December 5, 2012

Life After Autism

Look at this boy... he's so happy. I love that smile, how he beams from ear to ear with love. You know there are some days when things seem normal around our house. (Ok, maybe not days, but more like moments). Like this morning. I was getting my camera ready to take pictures at a charity event and asked the kids if they wanted to take some pics. Normally JD would say NO WAY or give me a bunch of silly faces, but today he was all grins. Pictures like these remind me how invisible autism can be.

If you saw JD you'd think he was just a normal kid. He has no outward signs of a disability, and we're very fortunate that he has stopped a lot of the outward signs of autism, like stimming or flapping. But inside that brain is a very different world. It's creative and fast, it shoots from one idea to another. It hears every sound, senses every movement and feels every touch in ways us "neurotypical" people don't. How do I know? Just by watching JD interact with the world.

You might not see it, but JD's autism makes him different that the rest. Add in a little, sensory processing disorder (SPD), OCD and some ADHD and things can be a little crazy. But man do I love this kid. He has a heart full to the brim of gold. Sometimes that gold is hard to see... like when he's hitting his siblings or spitting at me when he's mad, but I know it's there. When he turns to me and says, "My mommy - I love you" it makes me melt.

I wasn't sure if there'd be life after autism, but there is. It's changed our lives so much, but it's made me a better person for sure. Tomorrow I'll be spending my day at a huge event - the Autistic & Handicapped Children of Central Florida's 39th Annual Holiday Party. More than 1200 kids with disabilities will be there. And while 3 years ago I would probably have never been involved, today I can say that I brought awareness to more than 100 people in my company through volunteering. 

I'm so proud to be a mom of a child on the spectrum. And while some days I really don't want the job (just being honest!) I wouldn't change it for the world. God gave me JD for a reason and whatever it is, I hope I'm living up to His expectations!

Sunday, December 2, 2012

What a Surprise!

Two and a half years ago I started this blog as a new "autism mom" - scared, worried and unsure of the future. As a professional writer, blogging quickly became my outlet. It's been a place for me to share JD's development, my lessons learned and even some inspirational stories about our journey on the autism spectrum. I never imagined that anyone outside of our family would ever read my blog, but it's been a wonderful surprise to find out that people around the globe have stumbled upon it, one way or another, and have contacted me with questions, comments or just a quick "you're doing great mom!"

Just this week I received such a nice surprise from one of my readers. Her name is Deborah and she's one of my husband's friends and previous co-workers. A package arrived in the mail with a card and a beautiful pendant with five hanging charms: the first says Hope, the second is an autism ribbon, the third a little boy, the fourth says Faith and the last being a puzzle piece - the universal sign for autism awareness. How touched I was to receive this gift!  

Thank you Deborah so much for thinking of me! That was so thoughtful of you! I can't wait to wear it proudly - especially in April when it's Autism Awareness Month!

It's moments like these when I realize how far we've come. Not just JD, but our entire family. I'm no longer scared, just thankful that we've had so many wonderful people in our lives who have stood there and watched JD grow. Whether they're online, at work, or families and neighbors - we've been so fortunate to have helped spread the word about autism by living it first hand. 

This little guy is turning five in March. It's hard to believe it's almost been three years since his diagnosis. And although we struggle daily with different issues, I'm still amazed by the smallest things. Like today, watching JD drink from a bottle of water. Something so small took him about a year to learn how to do. No longer does water pour all down the front of his shirt... he's a bottled-water drinking pro! :)

Sunday, November 25, 2012

Holidays... Autism-Style!!

Last year I was extremely fortunate to start working with an amazing organization. It's called the Autistic and Handicapped Children of Central Florida. For the past 39 years, they have held an annual holiday party for children all over the local area with special needs. What started with a handful of kids in a backyard, has now grown to more than 1,200 kids at the Pines of Windermere - a beautiful outdoor facility in Southwest Orlando.

With this year's party coming up on December 6th, I've spent the last month recruiting volunteers from my company. One of the best parts about my job is that we get a "Wish Day" to volunteer for any non-profit organization of our choice. Most people like to do their Wish Day in a big group, and this is the perfect setting because they need as much help as they can get! Last year I recruited about 25-30 people, which was a great turnout. This year we've already had more than 90 volunteers sign up from Wyndham and I couldn't be more proud! I'm hoping that in the next week we can score 10 more and hit 100! What an amazing group of people I work with!!!

That's because holidays are tough - no matter who you are, but holidays can be extra stressful for families living with developmental and physical disabilities. To many of those families, it can be a big reminder that they're "not like other families" who experience holidays like Christmas with kids running around all excited or playing on their new bikes in the front yard. For a real life example - my son with autism has OCD and would rather unwrap and organize his toys by height than actually play with them! (I find it quite amusing since I am a little OCD myself and I can see why that in the midst of all the chaos from Christmas that organizing helps!) But we're really lucky. JD learned how to ride a bike this year - after an entire year and a half of working on it - and this year we're really hoping Santa will bring him a big boy bike instead of more dinosaurs or Thomas the Tank engines!

But even in the midst of difficult times for these families, it's people like the volunteers at my company that really make a difference. To many kids, this holiday party might be their entire Christmas, and going home with the memories of ponies, bounce houses and boat rides are more important than the newest tech gadget to them. Feeling loved, included and accepted is the best gift of all!

I'm really looking forward to the holiday party and be sure to stay on the lookout for pictures! Here's one of me and JD!

Sunday, October 28, 2012

A "Breakthrough" Day

Today was a day I refer to as a "breakthrough" day. It's one of those days when things that you've been working on just click, and for a moment in time you see all fruits of all the labor you've put into being a parent of a child with special needs. With kids on the spectrum, you can work for months on a goal, and sometimes lose faith that it will ever be accomplished (take potty training for example). But one thing I've learned as a mom with a kid on the spectrum, they'll surprise you when you least expect it! Now - I will say, for parents reading this whose children don't have special needs - these accomplishments may sound quite boring. But trust me when I saw today was a "breakthrough" day!

We woke up this morning to head to church and it was the normal chaos. I was a little nervous because I bought JD some new pants last night since we had a cold front come through, and I wasn't sure how he'd transition from shorts to new pants, but luckily no problem. Then right before we left, I asked the kids if I could take a picture of them all together and by a miracle, I got the shot above. This is the BEST picture I've ever taken of all three kids together. Normally JD is staring off into space or yelling because he doesn't want to say cheese. But in this moment in time, he was so happy to hug his big sis and grin ear to ear... I knew right then this was a special day.

Then after church we went to lunch. We normally go to a place called Joe's Crab Shack because they have an outside playground and I with the cool weather finally rolling in I figured the kids would like it. Normally it's complete and utter chaos when we go out to lunch. Not only do my kids run around like crazy children, but we spend a good $50 on food that no one eats. Mostly chicken fingers and go untouched and let's just say mommy doesn't go home a happy camper. But today we went and it was peaceful. With only one minor spill of a drink (which was even cute because JD said, "My mommy, I'm so sorry") we went on without a hitch. Everyone ate, no one fought. We didn't have to leave early. Awesome moment #2!

Then it came down to really the highlight of the day. In our neighborhood, we celebrated Halloween early with a big party. For the past two years, I have bought costumes for JD and not ONCE has he let me put them on him. He cried and says they're "too dangerous" lol. But this year was different. He knew exactly what he wanted to be - Batman - and LOVED putting on his costume. I sat there completely shocked as he let Jason put his mask and cape on him. It was like having a different child from last year. I figured it would only last a few minutes so I snapped (another!) good picture... (this is too good to be true!) but he kept it on for almost two hours, walking all through the neighborhood trick-or-treating with the other kids! It was amazing to watch him run up to our neighbors and say "trick or treat" and get the candy. It was like his first real halloween where he actually got it. I was so excited! 

Then to top things off - as if the day couldn't get any better - he asked TWICE today "mommy/daddy, I have to go pee-pee." All by himself!!!!!!!! That is a huge deal for us! What a big boy! I'm soooo proud. 

I can't say that our days are easy - just read my last post - but I can say that there's something about having a child with special needs that just changes you and makes you a better person. Seeing him become more and more independent makes me realize that all the work we do, day-in and day-out, is working will make his life a better one. We're just really blessed to have the family, friends, church, neighbors and coworkers who have stood by us during this journey. We love you guys!

Wednesday, October 3, 2012

I'm just gonna say it... sometimes I HATE autism.

If you know me, then you know I'm a pretty upbeat person most of the time. But lately (and by lately I mean the last few months), I feel like I'm so far down that I can't get up. I feel like each day I go to battle against something I can never defeat. Some days I win the fight, but in my head I feel like I'll never win the war. I'll take two steps forward, and ten steps back. And then I wonder to God, why?? Why did this happen?

I start thinking about how our lives will never be normal. How much I wish we could just experience one day without an autism meltdown. The dreams of fun-filled family vacations no longer seem realistic, because I know that the "fun-filled" part will end two minutes after we try to transition into the room. That Jason and I will become agitated and mad and start regretting that we ever left home. But home can be like a prison cell. It's the only "safe" place... far away from the stares, the humiliation, the anxiety. But when you feel like you can never leave your house you start dreaming of a life that's different.

Because not only do we experience the normal wear and tear other families do... the two full-time demanding jobs, the never ending laundry and house upkeep, the bills, the homework, lunches, and so on and so forth, but we have to add in the struggles that every autism family deals with. We have to stay on the same routine DAILY. Any alterations can mean a meltdown. JD asks me the same question hundreds of times within a week span, and by Friday I no longer take the time to answer, I just cover my ears and want to scream. We watch the same TV shows each day, he eats the same food each day. He screams if I don't sing him to sleep at night and they have to be the same songs in the exact same order. I'm still singing Christmas songs from last year and it's October.

What scares me is that I'm only two and a half years into this and sometimes I feel like I'm ready to hang up the white flag and declare defeat. But what does that do for him? Absolutely nothing. I can throw in the towel, or keep waking up day after day and try again. I have to keep it in perspective. It could be worse - a LOT worse. So I keep thinking to myself... maybe tomorrow I won't end up in the bathtub crying after everyone in the house is asleep. Maybe this will get easier.

Sunday, August 5, 2012

A Big Boy Summer!

I can't believe it's been April since I last blogged! Man I'm a bad mommy blogger! In my defense, things have been a little busy around the Graham household. The last four months have not only been eventful, but full of great accomplishments for JD. It's great to look back and see how much he's changed in such a short amount of time!

So where to begin? Let's see... we've spent a LOT of time in the water this summer. JD started off pretty hesitant, whereas his sister and brother went to the water like little fish. But after a few weekends in the pool JD finally came off the steps and swam in his "shoesie-shoesies" know by commoners as swimmies! Once he realized he wasn't going under, he was happy as a clam. For the first time in probably a decade I've been able to tan! It's the little things that make mommy happy. :)

Another big first for the Graham Fam - we went on an actual vacation! Now as smart autism parents, we didn't go anywhere where we couldn't come home if needed, so we stayed just stayed at the Wyndham Bonnet Creek resort over by Disney for a few days. I won't lie, it was totally stressful and JD had the hardest time the first night, crying himself to sleep to go home. But once he realized everything was going to be ok, everything got a little easier. I think the greatest lesson for Jason and me is not to attempt vacationing with three kids under the age of six without help. Next time I'm paying for Katie to come with us!

For the month of June, we took our first family trip to Gatorland to celebrate Father's Day. Now, as a native Floridian (growing up in Orlando), I can't tell you how many times I've sworn that I would never step foot in that "stupid tourist trap", but as I saw the kids eyes light up with excitement at the huge alligator mouth entrance, I had to laugh at the irony. I'll admit it, we actually had a good time. Only one massive meltdown during the trip over the train that goes around the park, but Jason and I handled it like pros!

Then for a little family fun with the cousins and neighbors! The Fourth of July holiday rolled around and my sister came over with my nephews Joey and Jacob. The kids had a blast - we spent the day in the pool and playing at the house. Back in the day we used to live five houses away from my sister, so it was so nice to get all the kids back together for some cousin fun. They really do love each other! Then to finish the long weekend with their neighborhood friends on the bounce house. We're gonna miss the summer nights hanging out outside with the popsicles!

Next stop? The beach! And not once, but twice! We met up with Jason's family for two days in Ft. Myers. This was the first time in almost three years since JD has been to the beach, so I wasn't sure how it would go over, especially with his sensory issues and the sand. But he LOVED it! He couldn't have been happier burying his Thomas trains in the "snow". The second trip he went into the ocean and loved that too! The beach is a good place for us! 

Finally, the two biggest accomplishments for the summer. Drum roll please... JD moved into big boy undies! (We're trained for number 1, number 2 we're still working on). AND he moved into his big bed! Both have been very big changes for him and it's not been easy for anyone in the family, but I'm really proud. He's growing up right before my eyes and all of the little things that we take for granted are so much harder for him, but he is the sweetest, most loving little guy and I'm so blessed to have him in my life!

JD starts back at school in two weeks and he's all ready to go in his Spiderman backpack. I can't wait to see how far he comes by Christmas!

Monday, April 2, 2012

Autism - A Family Affair

Our daughter Ashley is five. She was three years old when JD was diagnosed with autism and doesn't know life without her quirky and sometimes difficult brother on the spectrum. There have been times when we've tried to explain autism to Ashley but how do you explain something so complex like autism to a little kid? 

We talk about autism and I try to explain to her why it's difficult for JD to communicate and why he is easily upset when things don't go as expected. But at the end of the day she's still five and there's only so much she can really comprehend. What we try to do is make it a good thing. Autism isn't a bad word in our family. It's something that makes JD special, something that we love him for. I never want her to feel ashamed or embarrassed by her brother, but I know that there's a good chance that will happen one day. 

With Autism Awareness Month approaching I really tried to get Ash involved. She was excited about everyone wearing blue today (but a little confused as to why everyone else at school wasn't doing the same!), we drew pictures of puzzle pieces and she helped pass out the puzzle shaped cookies to our neighbors and teachers. I have no clue if it's the right thing to do, but it's what makes sense to me. I know as the years go on I'll have to explain a lot more, so I feel like it's better to be open about it now than have it become a taboo subject at home. She's such a wonderful big sister and I know she's always going to be there for him along this journey! 

Here's a picture of me dressed in blue to shine a light on autism at work! I love being able to share my story about autism and how it's made me a better person. Don't get me wrong - I lose my cool, get frustrated with JD and want to throw in the towel some days, but all-in-all having him in my life has opened my eyes to a world so much greater than my own!

Here's my little man playing video games tonight in his blue shirt. I can't believe how big he's gotten!

Sunday, April 1, 2012

Autism Awareness Month!

It's finally April - Autism Awareness Month! I've been thinking a lot about this blog post because in our family April is a month we look forward to, even celebrate. But I also know that for some families of children with autism  it's a very difficult month. That's because it brings light to a disorder that has affected so many families, some more than others, and it's difficult to put into words how bittersweet celebrating it can be.

The reason we celebrate Autism Awareness Month is simple. Raising awareness means that more people will understand, respect and hopefully empathize with families like mine. Note that I say empathize, not sympathize! We're not looking for sympathy, just empathy. Leave the judgement at the door. When you see a family struggling with a child crying, being disobedient or throwing themselves on the floor, just think for a minute before you come to a conclusion, because chances are that child might have a developmental disability like autism.

Autism Awareness also means that the world will be a better place for my child and so many others like him. Nowadays children with autism are in mainstream schools, possibly sitting next to your son, daughter, niece, cousin or grandchild. My hope is that the more people know about autism, the more they'll realize that these kids are talented, wonderful and loving children with so much to bring to our society.

Tomorrow I'll wear my blue shirt with pride, pass out 100 puzzle shaped cookies to my friends, family and coworkers and tell them how autism has changed my life. I'm proud to be an autism warrior mom, and I hope that each year I can continue seeing the blessings that JD has brought to my life, autistic or not. I wouldn't have him ANY other way!

Tuesday, March 20, 2012

Happy 4th Birthday JD!

Today my little boy turned 4! And with his busy birthday behind us, I'm a little sad that the years are going by so fast. We had such a wonderful day today. We went to SeaWorld and JD had the best time. We started out in Shamu's Happy Harbor and made our way through the entire park. He even went on the kids roller coaster and LOVED it... looks like he does take after mommy and daddy!

This was one of the best days of my life. As I sat there and watched his little face light up during the shows today, it just really hit me how much he's changed my life. When we got to the park today we immediately went to the water play area. And right away I noticed another little boy with special needs. He was with his grandma, who was helping him walk through the splash pad even though she was fully-clothed. Although you couldn't tell by his facial expressions, he loved the water and she loved helping him experience it just like any other child. JD was running around like a crazy man and I started a conversation with her and her grandson. I found out that he was also on the autism spectrum, however much more severe than JD. If there's one thing about having a special needs child, it's that you're automatically accepted into this special tight-knit group. It's like we just have this special bond with each other. 

JD has made me a better mom and a better person. I've never met anyone as loving and sweet as that little boy and each day he amazes me more and more. Tonight we celebrated with his neighborhood friends and his two cousins. He wasn't interested in the cake (won't even eat a bite) but he did blow out the candles and was really excited about opening his gifts. Little does he know that he's one of the three best gifts I was ever given. :)

Happy Birthday Jason Trouble Graham!! I love you!!

Sunday, March 18, 2012

Back to Dinosaur World!

Today I decided to take the boys to Dinosaur World - which I personally think is hidden gem in Orlando theme parks. It's about an hour down I-4, but well worth the drive considering the price of admission is only $15 for adults, and $12 for kids 3 and up. The place is awesome - it's filled with HUGE dinosaurs hidden along a three-lined trails, two great kid playgrounds, a fossil dig where kids can take home the treasures they find, and a museum complete with moving dinos. Oh and I forgot to mention the MASSIVE shop with more dinosaur toys than you could ever imagine. My boys couldn't be happier there and it doesn't break the bank which makes me happy.

The thing I love most about Dinosaur World is the chill factor. It's just basically a wide open park. The boys can run around, there are no lines, no real "rules", and nothing to break. They run between the dinosaur trail and the two parks complete with dinos and dino skeletons to climb on. 

There's picnic tables all around the park, so you can just relax any time you need to and feed the kids and unlike a lot of parks they let you bring in your own food and drinks because there's only vending machines on-site. 

With two little ones with short attention spans, it's great. You can stay for two or three hours and feel like you got your money's worth. This time we bought year passes ($30 per adult, $25 for kids 3+... can't beat that!) and I'm sure we'll be back quite often. 

Here's some pics from our day! What a fun time!

Wednesday, March 14, 2012

Lovin' This!!!

I'm super excited because life-long friend Jenny emailed me yesterday to let me know that a Stella and Dot, a company that sells super-cute jewelry and bags, is selling a bracelet for Autism Awareness month starting on April 1st!! 20% of the proceeds will go to Autism Speaks and it's a cute way to show your autism spirit even at work! They're $39 and you have to purchase them through a Stella and Dot vendor. If you're interested in getting one, let me know - Jenny is taking orders from all my friends and family! I'm SUPER excited!

Monday, March 12, 2012

Autism Awareness Month is Coming Up!

With Autism Awareness month coming up in April, I've been doing a lot of preparations! Last year I gave out personalized greeting cards with autism lapel pins to all of my friends and family. This year I found an adorable idea on Pinterest, puzzle shaped cookies! I asked my good friends at Cookie Cousins to bake me up 600 mini-cookies, enough for 100 bags, and I'm buying the labels off Etsy. I'm super excited to see how they turn out! Be on the lookout for pictures later this month! Here's the inspiration:

Monday, March 5, 2012

Silly Monkey!

Almost every night I put JD to bed and we have a very strict routine... we sit in the rocking chair and read one book (usually the same one every night), then JD gets up, turns off the lights, and comes back to to rock while I sing him songs. We always start off with Rudolph the Rednose Reindeer, move through Jingle Bells and Santa Claus is Coming to Town, then we start back into the classics, Twinkle, Twinkle, You Are My Sunshine, and Rockabye Baby (which in our case is Rockabye JD). The other night I was trying to calculate how many times I've sang those songs since the kids were born.... 365 days per song, per kid, multiply that by how old they are and....ok, I'm not a math person, but it's A LOT.

JD usually just listens to me sing, it's rare that he wants to sing along. But recently he learned a song in class that he LOVES called 5 Silly Monkeys. At first I couldn't understand him, other than the first line of "5 silly monkeys swingin' on a tree" so I googled the words and up it came. It's such a cute little song and I can see why he loves it so much. But what makes my heart melt is listening to him sing it to me before bed. It always brings me back to the days when he couldn't talk. Music was one of the first things that he really gravitated to and I feel like it's opened up a world to him where he can not only learn new things, but express his feelings. Music is safe to him, it's repetitive, it's predictable. That's why he loves for me to sing the exact same songs every night. It's a controlled piece of his day - he knows exactly what to expect and I know it soothes him to hear the words flow as we rock. 

I'm really thankful for music and for the things it's done for JD. Singing before bedtime has become such a big part of my life that I really hope he never wants me to stop. :)

5 Silly Monkeys

5 Silly Monkeys Swinging on a Tree
Teasing Mr. Alligator...
"Can't Catch Me!" 

Along Came Mr. Alligator
Quiet as Can Be
and... SNAP!
the Monkey Right out of the Tree!


Monday, February 20, 2012

Zone Defense in Full Effect!

Ever since Kyle came into our family two years ago our man-on-man type of parenting was thrown out the door for a zone-defense approach. Three on Two isn't (too) bad, but Three on One isn't fun, especially when it's Three on One with all three being five and under.

Today was a crazy day. I had the day off from work, but Jason had a few appointments in Tampa so it was me versus three bored kids. It's always tempting to just make them sit at home and watch tv because taking all three out on my own is really a recipe for disaster, but I've found that 8 hours of whining about being bored in the house isn't all that fun either. So knowing that the weather was going to be beautiful I decided to take the kids to Green Meadows, our local petting zoo.

It really seemed like a good idea, but as we got out of the car and all three kids ran in different directions I quickly realized I was totally outnumbered AND surrounded by parents of perfectly behaved children giving me the "this lady is crazy and her kids are totally out of control" look. Thankfully one of my friends from work came along with his little boy so I wasn't completely on my own, but at the end of the day it's me and three wild animals surrounded by hundreds of real wild animals... what the heck was I thinking?

It started out a little rough as we went through the "tour" - I have to say, the people that run the place take it VERY seriously and want to tell the kids alllllll about each animal. Now my kids have no patience for any kind of story telling - they want their hands on those animals ASAP! In the back of my head I'm swearing at the lovely tour guide wishing she would just open the pin and let the kids go in. (Did I mention I have no patience either?)

Ashley is pretty self-sufficient, however she is very much a know-it-all (insert big laugh here!), JD on the other hand is in his own world and has no idea that a massive animal might actually bite him, and Kyle is just a drama queen crying the entire time. My Zone D was in full effect!... Huge ostrich that bites? No problem, catching a duck? No problem. Juice boxes and snacks? No problem. Train ride? No problem. Parents watching me as I chase after three children going in three different directions - PROBLEM! I'm sure it's quite a sight to see, but geeez people, it's a petting farm! GET A GRIP! It's not like they're running into the road!!! And let me go ahead and answer all your questions...

YES - all three are mine and YES they were planned back-to-back-to-back and YES the red hair is from me and YES my middle child is developmentally delayed and YES I'm obviously insane. I think that about covers it. 

You know what? We had a great time anyway! The kids loved it and even though it was stressful it was worth it when we sat on the train, me and my three crazy munchins, and they smiled and cheered, "CHOO CHOO!!!!"  So I guess all those years playing defense in soccer and lacrosse has paid off! lol! :)