Tuesday, April 26, 2011

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 :)

Saturday, April 23, 2011

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!

FAQ # 4 - What's Your Biggest Worry?

This is a good one. I'm quite a worrier, so at any point in time I have a million things running through my head. But if I had to name my "biggest" worry I think it would be bullying. It seems like everyday you turn on the news or read online that a child has either killed themselves or have been killed because of bullying. I just don't understand how the world has come to this. I find it so sad that children can be so cruel to one another - but I guess it's always been this way. Maybe it's just the fact that social media has made it much easier for these kids to bully each other in a large-scale format, or maybe the morals of our society are going down the drain. Either way it's what I worry about the most. We work so hard to get JD "mainstreamed" - but at the same time I know that he'll always be the "quirky" kid in class and he'll probably be made fun of. All I can do as a parent is try to do educate others about autism, including other children, because as the diagnosis rates continue to rise I know that JD won't be the only one facing this problem.

Monday, April 18, 2011

FAQ #3 - What's it like to have a child with autism?

I know people often wonder what it's like to have a kid on the autism spectrum. You see it on tv sitcoms, on Oprah and in the news - the child with autism who doesn't talk, doesn't interact, doesn't make eye contact, etc. But when you experience it first-hand you realize that every child with autism is unique. I can't vouch for anyone but myself when answering this question, but here's my best shot...

Having a child with autism is like living on an emotional roller coaster. Some days I feel like we're on top of the world - that we're making huge strides and that anything is possible. Other days I feel conquered and that we have so far to go. But most of the time we're somewhere in the middle just coasting along at a steady pace.

Having a child with autism is filled with frustrations and joy, just like with any other child, but magnified by 100. Daily life isn't easy anymore, just transitioning from one task to the next can cause a major meltdown. But you just learn how to roll with the punches (sometimes literally!) because in the next moment you might experience a major success. Bedtime is always a great example of this. Every night JD loves to play in the bathtub, but when it comes time to get out he gets really upset. Normally we end up having to pick him up out of the tub, wrap him in a towel and let him fall to the ground crying. Eventually he gets up and makes his way to the bedroom knowing that he's not going to win. This can be really frustrating when you do it day-in and day-out, but we know that what happens next is worth the fight...

After struggling to get his clothes on for bed as he cries "clothes on!" we close the door and read books and sing. He's in pure heaven. He'll belt out song after song in his cute little voice and we cheer him on because we know a year ago that wasn't possible. He's come so far. Within 30 minutes we've taken the roller coaster ride all the way around.

With the ups and downs, loops and spins, sometimes I feel like I can't take another day, but then JD will come up to me and say, "quaw - wannahug?" and I'm ready for another ride. :)

Wednesday, April 13, 2011

How Did You Know JD Had Autism?

I've had a lot of people ask how I knew that JD had autism, especially since he was diagnosed at such a young age. I think a lot of it had to do with intuition, but there were a few big things that stood out. I didn't know at the time that it was necessarily autism, but looking back I can see it clearly. I remember starting getting a feeling when JD was around 16 months old that something wasn't right, but to tell the truth I was midway through my third pregnancy at the time and it was all I could do just to make it through the day with two little ones so I didn't act on it. When JD was diagnosed it was based on a few main problems:

  • Communication delay - he could only say five words by the time he was two. He didn't gesture either. He wouldn't point to something he wanted or bring you something or even hold his arms up when he wanted to be picked up.

  • He lacked something called joint attention, meaning that if you pointed at something and said JD look! He would look at my finger, not the object I was pointing to. He couldn't connect that I wanted him to look at something in the distance.

  • He couldn't understand simple directions, so if I said JD bring me the book he had no idea what I was talking about.

  • He didn't really play, he stimmed. At the time I didn't know what stimming was, but I knew when he played with his toys (normally trains) they always had to be at eye level and he would bring his face real close and stare at the wheels while he moved them back and forth. It wasn't imaginary play.

  • He had HUGE tantrums (and still does) when things don't go as planned or he can't communicate something he wants or needs. I'm not talking the normal whining/crying tantrum, I'm talking full body throw yourself on the floor screaming hitting biting hysterics that would go on for 20 minutes or until we figured out what was wrong.

  • He never really interacted with anyone in the family and was much happier playing with his trains. He never liked to cuddle and if you held him he always had to be held facing out. Loud noises really bothered him and he would be totally overwhelmed if we did anything in crowds.

  • He didn't walk until he was 20 months old and even then he preferred to crawl.

My advice for parents is if you ever have that feeling that something just "isn't right" - bring it up to your doctor and don't let them brush you off. What I've learned is that they may be experts in pediatric medicine, but I'm an expert on my son.

Thursday, April 7, 2011

FAQ #1 - "Do you think immunizations cause autism?"

This is normally the first question any parent asks me when I tell them that my son has autism. I think anyone who has had a child in the last five or so years has spent the first two years of their life worrying about autism kicking in after a routine immunization. This is widely because of a study that was published that said that mercury in the immunizations caused autism. Also around that time Jenny McCarthy's son was diagnosed with autism and she did a very public campaign around the subject of immunizations. My answer is honestly I don't know. I've gone back and forth about it. I know that the CDC has stated that autism does not have a direct link with immunizations; however I'm not sure how much I believe them since stating anything other than that would cause a MASSIVE uproar in the healthcare system. However, I do know from a personal standpoint that JD never experienced any bad reactions after a shot. Many parents with children on the spectrum say that their children were developing normally until a certain age (usually two) and after getting a certain vaccine they began to withdrawal from the world. We never experienced that - from what I remember JD was never on target developmentally. One thing I do question is the use of "cocktail" vaccinations - That's when they put multiple vaccinations into one shot, so if they have to get four vaccines that day, they'll use two shots. Both JD and Ashley had their shots this way until they were two - JD has autism, Ashley does not. However, when we moved and found a new pediatrician, he explained to us that he did not feel comfortable doing shots this way. So with our youngest child we have done each vaccination separately and spread them a few weeks apart. I will say that this makes me feel better, especially since we have one child on the spectrum. I'm a big believer in traditional medicine. I have a doctor who has never steered me wrong. I'm not saying that doctors cannot make mistakes, but I think we have to trust that they are experts in their field. I truly believe that our pediatrician would never do anything to my children if they felt there could even be a remote chance of it causing autism. It's a subject of so much debate and I think there are strong arguments on both sides, but for me I guess I lean toward no - I don't think the shots were the deciding factor on JD's autism. I think it's a genetic disorder that he's had since birth. Only time will tell, I have no doubt that they will continue researching this until long after I'm gone. But I can't live my life wondering so I choose to focus on the here and now.