I love it when you open up your Facebook, and in the blank box at the top it says that phrase..."What's on your mind?", trying to prompt us all to update our status with something witty, thought-provoking, proclaiming of our kids' latest accomplishment or (sorry to say) sometimes boring little blurb that is supposed to keep people abreast of what's going on in our lives.
But come on, really?
I am supposed to let you know this in 145 characters or less?
The truth of it is, lots of times I actually put probably too much thought into what I write up there, simply so I don't look like that boring person or someone who is just reaching out for attention.
More than that, if I REALLY wanted to tell you what's on my mind, it would take a heck of a lot more than 145 characters. I often have trouble going to sleep at night simply because there is so much on my mind that I can't empty it all out and relax.
Ever since Simon was diagnosed with Autism, that little space up there referred to as my "mind" has been working overtime. Every parent (well, every good one at least) is constantly thinking of their children - whether it be what to fix for dinner, how they are going to get them to the next practice, when to schedule that next dentist appointment, or if we were too hard on them the last time we "laid down the law" over why they can't drink 3 cans of root beer before dinner. When you find out there is something specifically wrong with your child, you tend to dwell on that condition and put yourself on a mission to find all the information that goes with it, and add it on to the list.
I have spent hours on websites, searching Google, and reading blogs all connected to Autism. I have went to two conferences, and am about to attend a third next week. I have talked with other parents, teachers, and therapists about children with Autism. I have so much information up there right now that recently someone asked me what I had learned about Autism this summer, and I had a hard time coming up with just one thing to provide her an answer. My mind was a spinning wheel, and I couldn't get it to stop at just one point of interest.
There is truth to the phrase "Knowledge is Power". I believe that all of the information-gathering I am doing will help guide us in the direction that we want Simon to be going, as well as where he needs to be going. But at times, the information is OVERWHELMING. Just as with every decision we make as parents, I find myself second-guessing my decisions regarding Simon's treatment all the time. Should we really go gluten-free? Is it wrong to tell him "no biting", even though it is a response to stress for his sensory processing disorder? Are we being intense enough with his schedule? But if we were more structured would it lead to him being more rigid? If you know the answers to these questions, by all means, give me a call. I'm guessing that you don't. None of us have all the answers when it comes to parenting OR autism.
Needless to say, I have A LOT on my mind. A lot of uncertainty currently exists about our future with this disorder, and it can be fatiguing to think about it too often. So for right now, I have decided to keep doing what I am doing - gathering information, doing the best that I can as a Mom, and trying to find ways to calm myself down at night in order to get more sleep. Was that last sentence 145 characters or less? Maybe it will pop up as my latest status update sometime soon. :) Because I CERTAINLY can't fit what's all on my mind in that tiny little box.
Monday, August 9, 2010
Thursday, July 15, 2010
Simon Speaks 2 All Of Us
Well, here we are.
As if I don't have enough craziness going on in my life, I have decided to start a blog. Or, I should say, ANOTHER blog. My first kinda fizzled out when I became a Facebook junkie :), because it seemed anything I wanted people to know could be found on my "wall".
Yet, as of lately, I have found that there are so many things running through my mind that it might be helpful to have some sort of "diary" to keep track of them all. Posts can only be so long on FB, and my sometimes off-hand ramblings might not be of much interest to any of my friends to be bothered with.
With that said, let me take a step back.
As many of you who will probably read this are aware of, our Simon is Autistic. He is 3 years old, and a WONDERFUL little boy. He warms my heart and I am proud to call myself his mom. However, life with Autism does present with challenges. MANY of them. I'd be lying to us all if I said it didn't.
Since his diagnosis 2 days before his 3rd birthday, I have been through the gamut of emotions...I have felt sad, I have felt helpless, I have felt alone...and I have felt joy. The last has been slow to come, but it is there. When you look at your child and get a smile back, or a big squeeze, how can you NOT feel joy? He is my son, and no matter what, I will love him with all my heart.
One of Simon's primary areas of delay is in language. When we had his evaluation done, he was saying maybe 5 words, really only 2 with repetition. A couple of weeks ago, we could count 25, and I'm sure we missed a few. His progress so far has been outstanding, and we have a team of people to thank for that. As of lately I have found myself excited - with caution - about what our future could hold for us, and my soul has been put more at ease.
I decided to start this blog after I recently attended the Autism Society of America's National Conference in Dallas, TX. Seeing adults who are successfully living with Autism along with numbers of people all there to share a common interest has renewed my spirit in tackling this thing head-on. I also found that I have so many thoughts and ideas that I just need to GET OUT of my head...so, what better way to do that than to blog? I feel there is so much to be learned from our experiences and those of others that I want to share them openly and encourage others to do so as well.
Even though Simon doesn't have many words...Simon SPEAKS. He speaks in ways that don't need words...literally, he uses body language, gestures, picture cards and sometimes just a good 'ole push to get what he wants. More than that, he SPEAKS to me in ways that are teaching me new things about him, myself, and the world that I wouldn't have been challenged to learn otherwise. I just have to make sure that I am paying attention - LISTENING - and taking advantage of the opportunity.
In this same way, I think that Simon can SPEAK to us all. Who of us couldn't use a different vantage point on the world once in awhile? It is only through education and understanding that the world will become more accepting of Autism and help us in our journey. My hope is that maybe if I share our world and my madness with you :), maybe it will bring us all a step closer. Oh, and that you will learn to enjoy Simon just for who he is, Autism and all!
As if I don't have enough craziness going on in my life, I have decided to start a blog. Or, I should say, ANOTHER blog. My first kinda fizzled out when I became a Facebook junkie :), because it seemed anything I wanted people to know could be found on my "wall".
Yet, as of lately, I have found that there are so many things running through my mind that it might be helpful to have some sort of "diary" to keep track of them all. Posts can only be so long on FB, and my sometimes off-hand ramblings might not be of much interest to any of my friends to be bothered with.
With that said, let me take a step back.
As many of you who will probably read this are aware of, our Simon is Autistic. He is 3 years old, and a WONDERFUL little boy. He warms my heart and I am proud to call myself his mom. However, life with Autism does present with challenges. MANY of them. I'd be lying to us all if I said it didn't.
Since his diagnosis 2 days before his 3rd birthday, I have been through the gamut of emotions...I have felt sad, I have felt helpless, I have felt alone...and I have felt joy. The last has been slow to come, but it is there. When you look at your child and get a smile back, or a big squeeze, how can you NOT feel joy? He is my son, and no matter what, I will love him with all my heart.
One of Simon's primary areas of delay is in language. When we had his evaluation done, he was saying maybe 5 words, really only 2 with repetition. A couple of weeks ago, we could count 25, and I'm sure we missed a few. His progress so far has been outstanding, and we have a team of people to thank for that. As of lately I have found myself excited - with caution - about what our future could hold for us, and my soul has been put more at ease.
I decided to start this blog after I recently attended the Autism Society of America's National Conference in Dallas, TX. Seeing adults who are successfully living with Autism along with numbers of people all there to share a common interest has renewed my spirit in tackling this thing head-on. I also found that I have so many thoughts and ideas that I just need to GET OUT of my head...so, what better way to do that than to blog? I feel there is so much to be learned from our experiences and those of others that I want to share them openly and encourage others to do so as well.
Even though Simon doesn't have many words...Simon SPEAKS. He speaks in ways that don't need words...literally, he uses body language, gestures, picture cards and sometimes just a good 'ole push to get what he wants. More than that, he SPEAKS to me in ways that are teaching me new things about him, myself, and the world that I wouldn't have been challenged to learn otherwise. I just have to make sure that I am paying attention - LISTENING - and taking advantage of the opportunity.
In this same way, I think that Simon can SPEAK to us all. Who of us couldn't use a different vantage point on the world once in awhile? It is only through education and understanding that the world will become more accepting of Autism and help us in our journey. My hope is that maybe if I share our world and my madness with you :), maybe it will bring us all a step closer. Oh, and that you will learn to enjoy Simon just for who he is, Autism and all!
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