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! :)

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!

What's He Like?

If you know me, then you know that I love talking about autism. I feel like JD's diagnosis opened my eyes to so many things that I never knew existed. Like for instance, most people know the five senses - sight, touch, taste, sound and smell. But did you know there are actually there are two more? Proprioception and vestibular. Don't feel bad - I didn't know either until I was an autism mom.

Normally when people find out my son has autism they ask me a lot of questions about what he's like. How does he act? What makes him different? Does he talk? I really love it when people ask because it gives me the chance to not only tell them about JD, but also teach them a little bit more about what I've learned. Here is a little insight to life with autism:

• JD knows no strangers - he will say hi to the person passing by in the grocery store until that person responds. After about the 5th "hi" with no response, I want to scream at the person, "just say hi back!!" cause he won't stop until he does. He's also a "flight risk" meaning that he has no concept of being lost or hurt so he could run away at any time without the ability to get back.
• He loves to chatter when he's nervous or excited. He'll run up to you and talk to you, but you have no idea what he's saying. They call that "jargon" - it's speech, but it's not understandable. It's like an effort to communicate when he doesn't know what he's trying to say.
• We've finally gotten to the point where he can answer yes/no questions... normally when it's no, it's NO!! (insert the really loud screaming here). But most questions he can't understand - like what did you do at school today? or what's your favorite color? In this instance he'll just repeat the last word I said to him, which is called "echolaila." He does this because he knows I'm asking a question that requires a response, but he doesn't know how to answer it so he just repeats the question.
• He has what's called "food aversions" meaning he's super picky about what he eats. Right now his diet mainly consists of strawberries, bananas, chicken, goldfish and popsicles. He hates cake, candy, ice cream. Luckily he does like sprinkle cookies so we make sure we bring some to parties so he still gets a treat like the other kids.
• He LOVES routine and even though I'm a Virgo who also loves structure, this one drives me insane. Things have to be the same, day-in, day-out. If you change it up, there will be a meltdown, and I'm talking screaming, crying, biting, hitting, skin-turning-red meltdown. Here's an example - our evening routine. JD has to take a bath, watch a cartoon (the exact same one we've seen every night for a month), then we have to read two books - Dinosaur Parade and the Going to Bed Book, then we sing the same five songs, we cuddle and then he can finally get in the bed. If I try to take any of those items out of the equation, or do them out of order, he loses it. We live and die by routine at our house and I hate anything that will make us vary from it. His routine makes him feel safe, so if we change it, it totally rocks his world.
• You learn to expect the unexpected. JD can be thrown off by the littlest things. The other day I was running late to work and I didn't let him stop at the fish tank on the way into his classroom, I tried rushing him and BAM! it's over - he's lost it. On the floor, hysterical, biting his hands to express his anger at me. I felt horrible because I forgot that's his morning routine - he's gotta look at the fish tank for at least a good minute before we move onto the classroom - no if, ands or butts about it, unless you want to ruin the day.

There are so many other little quarks about autism, and at first it's completely overwhelming. But little by little you get used to it and adjust. The good thing is that you just learn as you go and try to roll with the punches. The reality is that even with all these little issues, JD is such an amazing little boy. Every time I turn around he's making me smile - like when I came home from work today and immediately he said, "mommy - wanna kiss?" OF COURSE I DO! :)

It's Been So Long!

Where has time gone? I can't believe November is around the corner and I haven't posted a blog in months! It's been an eventful summer at the Graham household. We moved in July (yes, the hottest month of the year!) so that we could be closer to my job, the kids started a new school, and I'm still trying to get all our ducks in a row - lining up a new pediatrician, finding new therapists, transfering JD's IEP from one county to another.... I feel like there's just never enough time in the day.

I saw a post on Facebook this afternoon from the Orlando chapter of Autism Speaks and I realized that the Orlando Walk is just two weeks away! On Saturday, November 12, our family will be out at Cranes Roost Park in Altamonte participating in the annual "Walk Now for Autism Speaks." I set up our Team page and I appreciate any support we get! My goal is not just to raise money, but to raise awareness. Since JD was diagnosed almost two years ago, I have met some of the most amazing children and families with autism. This "invisible" disorder is something that can make you feel very alone in the world, but I feel that education is the best way I can advocate for my son.

My goal in November is to write a new blog each day talking about being a parent with a child on the spectrum. I hope you'll come back to read more! JD has made such huge progress from the day he was diagnosed in 2010 to now and I am eternally grateful to the family, friends, therapists, teachers, coworkers, neighbors, EVERYONE who has supported him. And since pictures really can really say more than any words I will share these two for you:

This is JD at his 2nd birthday party, the day before he was diagnosed. He was scared, overwhelmed, confused, begging for help through his big blue eyes. Looking back it's clear at day...

Now look at my handsome little man - he's so confident and happy. Everyday he takes a few more steps forward and I'm so proud of him!

Understanding the "Spectrum"

When you have a child with autism you hear the word "spectrum" come up almost daily - it's something you become very familiar with. As science has studied autism over the years, it's become apparent that it is really an umbrella term for a group of developmental disorders, and when gathered together they are called Autism Spectrum Disorder or ASD for short. Referred to as "autism" by most people, ASD is a broad range of developmental issues seen in three main areas: communication, social interaction and repetitive or unusual activities/interests.

Over the past year we've been very fortune to watch JD grow each day, further and further to the "right" of the spectrum. That means that although he was diagnosed with moderate autism at the age of two, he is progressing to mild autism and hopefully into asperger's syndrome by his elementary school years.

However that's not always the case. Some children do not progress, especially those in the severe category. Although they make remarkable progress in their ability to function independently, they will never "grow off" the spectrum. The struggles these families deal with are monumental and their ability to love, nurture and accept their children is truly a gift.

There are moments when I forget how far JD has come, but then I'll see a story of a family whose child is facing far more difficult challenges. My heart goes out to them, because even though are children are so different, we are all experiencing the same pain. As parents of children with autism it's our responsibility to support one another - no matter where your child falls on the spectrum - because we're in this together.

That's a big reason why I have this blog - to educate people on the huge "spectrum" of autism. There are so many children and families under this umbrella that mainstream society overlooks. The children that, on the outside look perfectly normal, but are dealing with sensory, emotional, physical, and speech issues. But at the same time not overlook the children who are severely autistic, the ones that may stand out in a crowd because they're flapping, twirling, or speaking in gibberish. These children are all special in so many ways, and as the number of children on the spectrum increase, so will the need for society to be aware and understanding. I think we're making huge strides in this area, but each day we have to continue to educate. That's what is going to make a difference in this world.

We're Moving!

It's been a crazy month at the Graham household. I've been back to work now full time since January and my office is located about an hour away from our house (with traffic). That's pretty normal in Orlando, but for our family it means that I only get to see the kids for about two hours a day... not good!

On a whim we decided to put our house on the market to see if there'd be any interest. Four days later it SOLD! Great news, but that meant we had to go into warp speed to find a new house, find a new preschool for the kids, pack and move. So far we've found the new house and the new school. Now we're in the midst of packing and moving.

I'm super excited because the new house is only 15 minutes away from my office which means I'll finally be getting home at a regular hour! It's a really nice gated neighborhood with a community park and two pools. Their preschool is five minutes away and so far I'm really impressed. They're giving me the option of bringing in a shadow for JD while he makes the transition. It's a "normal" prek so I'm really excited to mainstream him. I think he's ready.

The past month has been an amazing month at work - I'm working on a project that could have a big impact on the autism community. It will take a long time to get it implemented, but it's moving right along. I'll keep you posted!

To Mainstream or Not to Mainstream...

Lately I've been stressing out over the fact that August is quickly coming and I haven't made a decision about what to do with JD. His therapeutic preschool program closed in the spring and we've been doing 1:1 therapy for 5 hours a day ever since. The problem with 1:1 therapy is that he never gets the chance to interact with other kids. So we want to get him back into a preschool, but the choices are quite limited for a child like JD, especially since he's what doctors consider "high-functioning."

Basically high-functioning means two things: he's too advanced for a school specifically made for kids with autism, and he's too far behind to go to a school made for "neurotypical" kids. It's so frustrating - we're just stick in the middle - I feel like there's no good place for him.

I've spent hours researching schools, trying to find all the options. There's the public school option (which in our case didn't work), there's the private ABA centers, which focus on behavior therapy, there are schools for sensory integration, and private schools that may be for regular kids but will take a kid on the spectrum if they feel he can keep up.

I'm in the interview process right now. I'd really like to mainstream him, so we're meeting the director of a large preschool here in Orlando to talk about starting him in August with a full-time shadow until he gets adjusted. The cost? Normal preschool rates, PLUS $70 a DAY for a shadow. Good Lord. We're talking like $2000 a month for PRESCHOOL.

I guess it will be worth it in the long run if it benefits him, but that's if we can make it without going broke first! My head is still spinning with options but right now I just try not to worry about it because it makes my stomach sick! :(