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! :(

FAQ # 6 - What's been the hardest part of the last year?

Most people know that the puzzle piece is the official symbol of autism and there are a few answers as to why they use it. Here's my opinion - when your child is diagnosed with autism, it's like being given a 1000-piece puzzle in a box. You struggle to find the right fit every step of the way.

I think the hardest part of the last year has been absorbing all-things autism. After you get a diagnosis, you not only have to learn to deal with the wide-array of emotions, but you also have to become an autism expert (overnight if possible!). I've spent DAYS upon DAYS researching, trying to learn as much as possible about this disorder. I mainly spent my time learning about the various therapies available. In the beginning I spent way too much time on the computer. Watching videos, looking for specialists, finding options for schools. It started taking over my life and I had to stop. Unfortunately when you're a mom and your child needs something, there's no stopping until you've found it. At least that's how it is for me.

Then you have to start making decisions. That's the tough part. What therapies should you try? How long do you try them for? What if you don't like your therapist? How many hours a week should you do? There's so many options out there that there's no way to try them all. Then you start second guessing yourself because you pick one and then wonder if it was the right choice. I learned that eventually you have to pick something and stick with it, at least for a while. Everyone wants to make the right decision, but you have to just follow your gut feeling and hope it's right.

Recently I decided to go back to work full time. That was a really hard decision. Before I spent my days taking care of my three kiddos, driving Ashley to preschool, taking JD to therapy, entertaining Kyle. But the good part was that I talked to JD's therapists everyday. I was very entrenched in his therapy, probably too much so. Eventually we found a teacher/therapist that we loved and things have been wonderful for him ever since. I realized that going back to work was the best option for my family. I was able to provide JD the best therapy available, and I was able to do what I love. That's not to say though that I don't have moments where I wonder if it's the best thing to do. I guess only time will tell.

I feel like I'm maybe about 100 pieces into the 1000-piece puzzle, and I've got SO far to go. Each time you think you find a piece that fits, you pick it up, look at it from every single angle, put it back down, rethink if it really fits, and finally try it out. Maybe it will be done in 20 years or so :)

FAQ # 5 - How Has Autism Changed You?

I think when you become a parent your entire outlook on the world changes. It's the same thing when you learn that your child has a autism, or any illness I'm sure. I have changed a lot since JD was diagnosed a year ago. But I think the biggest change I experienced was waking up to the fact that there are literally MILLIONS of people in this world who are struggling with raising a child with a disability.

Everyday activities aren't easy for these families. We don't worry about things like playdates and school activities - we worry about doctor appointments, therapy options, money, insurance, schools, acceptance, awareness and so much more. Sometimes I wish that I could rewind the clock and experience a day before JD's diagnosis just to remember what life was like when our biggest worry was what to do on the weekend.... oh the simple life! It's not really something you can understand unless you've been in the same boat - so there's no way you can really get angry at people who are oblivious to it.

I think having a child with autism has made me a better person. It's given me patience, love, acceptance, awareness, forgiveness and so much more. It's shown me to appreciate the small "wins" in life that before I overlooked. It reminds me that the best thing you can do is cheer your kids on, not tear them down, because positive reinforcement is an amazing change-agent. It's also given me a life purpose, to raise awareness of this disorder make this world a little better for other families with children on the spectrum.

Here's a clip of an article that I wrote for work, that was distributed to more than 200,000 people around the country. It's just one way that I can make a difference. I'm already working on bigger and better things!