A few weeks ago, I bumped into a former classmate of mine. We happened to arrive around the same time at an indoor trampoline arena; I had Little Guy with me, and she was with her children - a little boy and girl.
I've only seen her a handful of times since graduation, mostly at holiday celebrations in our hometown. She didn't recognize me right away, but I decided to approach her. I introduced myself and we chatted for a moment. A short time later we found ourselves together in the same area of the lobby, filling out permission forms for our kids. As I was busy writing down information, she leaned over to me and said, "You know, I just came across your blog." She proceeded to tell me that her seven-year-old son was struggling with many issues similar to Little Guy and that they were in the process of having him tested for Asperger's Syndrome.
I was astounded. You see, she was the sixth person to approach me in the last month. These have been friends, neighbors, and acquaintances who, upon reading this blog, have shared their own struggles raising a child with sensory, anxiety, and/or autistic issues. In most of these cases, I had no idea these individuals were going through the same journey as I. While this revelation helped reaffirm my efforts in spreading awareness and information to others, it also proved what an epidemic autism and its related disorders are becoming.
When our oldest had his diagnosis given four and a half years ago, I spent many hours of research on the internet. At that time, it was estimated that 1 in 166 children would be diagnosed with some form of autism. Recent research now suggests that number is closer to 1 in 100 children.
What's happened? Why are the numbers increasing?
Part of it is due to greater awareness and better diagnostic procedures. However, I find it hard to believe these factors have solely been responsible for this dramatic increase. There are many theories out there which include diet, in-utero stress, exposure to a virus during a critical time of fetal development, immunizations, genetics - the list goes on and on. I'm a numbers type of person; to convince me of a statement's validity, it needs to be backed up by reliable data. And the frustrating fact is, none of these factors have been proven to cause autism. Studies do show that once a couple has one child diagnosed with an autistic spectrum disorder, their chances of having a second child with a similar condition jump to 1 in 7. This suggests a hereditary predisposition linked to autism - but the problem is, if there is a gene responsible for causing autism, it has yet to be discovered.
In the meantime, those of us who care for an autistic child will continue to do what we can to minimize disruptive behaviors while helping them make sense of an often confusing world. And while we cope with autism's effects, we look forward to the day when the cause - and cure - of this condition will be found.
Monday, November 28, 2011
Monday, November 21, 2011
A Great Day For a Good Knight
Little Guy turned five Saturday.
We haven't had a good track record with birthday parties lately, so I admit I was rather nervous to see how Little Guy would handle his big day. I did what I could to make it easier for him by planning activities I knew he would like and limiting the number of guests to cut down on noise.
We planned his party around a knight theme. There was armor to make:
Giants to vanquish, and a dragon to slay:
Our brave knight held it together for most of the party. Only at the end, during the mad rush to get candy from the pinata, did he start crying. The meltdown didn't even last very long because all of his friends offered to give him some of theirs :)
It was a great day for our good little knight!
Sunday, November 13, 2011
So Thankful
It's November, that time of year when many take the opportunity to reflect upon the blessings in their lives. I've noticed several individuals on facebook and in the blogging world are daily counting down the things they are grateful for.
I haven't jumped on the thankful train this year. Frankly, I haven't been in the mood. Things aren't terrible in my life, but I'm just worn out. Physically and emotionally frazzled by trying to keep up with the demands of caring for a developmentally delayed child. And, it's been a little tougher than usual lately.
However, something happened a few days ago. An "ah-ha" moment that really reminded me of how blessed we are compared to others on the spectrum. Of how worse things could really be.
On this particular day, I was feeling rather sad about Little Guy's diagnosis. He and I had attended a birthday party the day before, which Little Guy had not handled well at all. The differences between my son and the other party kids were very evident, and although the host was understanding, the other children were clearly uncomfortable with the situation.
My husband and I had decided to take the two younger boys bowling, an activity Little Guy usually enjoys. However, he seemed unfocused that evening and kept wandering over to the arcade games. Added to the party experience of the day before, things felt a bit overwhelming.
Suddenly, my attention was drawn to another little boy who kept wandering around the bowling center. He was about Little Guy's size, although he could have been a few months younger. He was with a large family, and each member patiently took turns watching him as he was unable to sit still for any length of time. This child was particularly attracted to the foozball table, pushing the coin slot in and out while twirling the handles repeatedly. At one point, I noticed he was wearing diapers, despite being past the typical toilet trained age. I only heard him speak once; it was a two word sentence comprised of "daddy" and "ball".
This little boy was clearly autistic. I couldn't help but compare him to my son - who is potty trained, able to sit and focus for short periods of time, and has incredible verbal skills. Sure, there were some similarities, but it was clear Little Guy was in a much better place than this poor child. To his parents, I'm sure the difference between their son and Little Guy seems as distant to them as Little Guy and a "neurotypical" child does to me.
I was grateful - and humbled - as I called Little Guy over to take his turn. Thankful he could actually comprehend enough to be able to play with us at all. Thankful I could ask him a question and know that he not only understands what I am asking, but is able to answer in complete sentances. And...thankful he is capable of wearing underwear :) While I know we will continue to have our struggles, things could be SO MUCH WORSE. My goal is to foster this sense of gratitude by focusing more on Little Guy's strengths - his incredible memory, wonderful vocabulary, and amazing intelligence. For these, I feel lucky indeed.
I haven't jumped on the thankful train this year. Frankly, I haven't been in the mood. Things aren't terrible in my life, but I'm just worn out. Physically and emotionally frazzled by trying to keep up with the demands of caring for a developmentally delayed child. And, it's been a little tougher than usual lately.
However, something happened a few days ago. An "ah-ha" moment that really reminded me of how blessed we are compared to others on the spectrum. Of how worse things could really be.
On this particular day, I was feeling rather sad about Little Guy's diagnosis. He and I had attended a birthday party the day before, which Little Guy had not handled well at all. The differences between my son and the other party kids were very evident, and although the host was understanding, the other children were clearly uncomfortable with the situation.
My husband and I had decided to take the two younger boys bowling, an activity Little Guy usually enjoys. However, he seemed unfocused that evening and kept wandering over to the arcade games. Added to the party experience of the day before, things felt a bit overwhelming.
Suddenly, my attention was drawn to another little boy who kept wandering around the bowling center. He was about Little Guy's size, although he could have been a few months younger. He was with a large family, and each member patiently took turns watching him as he was unable to sit still for any length of time. This child was particularly attracted to the foozball table, pushing the coin slot in and out while twirling the handles repeatedly. At one point, I noticed he was wearing diapers, despite being past the typical toilet trained age. I only heard him speak once; it was a two word sentence comprised of "daddy" and "ball".
This little boy was clearly autistic. I couldn't help but compare him to my son - who is potty trained, able to sit and focus for short periods of time, and has incredible verbal skills. Sure, there were some similarities, but it was clear Little Guy was in a much better place than this poor child. To his parents, I'm sure the difference between their son and Little Guy seems as distant to them as Little Guy and a "neurotypical" child does to me.
I was grateful - and humbled - as I called Little Guy over to take his turn. Thankful he could actually comprehend enough to be able to play with us at all. Thankful I could ask him a question and know that he not only understands what I am asking, but is able to answer in complete sentances. And...thankful he is capable of wearing underwear :) While I know we will continue to have our struggles, things could be SO MUCH WORSE. My goal is to foster this sense of gratitude by focusing more on Little Guy's strengths - his incredible memory, wonderful vocabulary, and amazing intelligence. For these, I feel lucky indeed.
Saturday, November 5, 2011
Little Guy's Halloween
Life with a child on the spectrum is like a box of chocolates...you never know what you're going to get.
And I just wasn't quite sure what to expect from Little Guy this year.
Halloween can be overwhelming for a child with sensory issues; itchy costumes, loud noises, bright colors - you get the picture. Added to these possible setbacks were Halloween celebrations spread out over three different days.
I worried it might be too much for my son.
He really wanted to dress up as Aang, the avatar airbender. My husband brought home a great children's outfit from China last spring, and we buzzed Little Guy's hair really short. We added a staff and painted on a blue arrow, and here's what he looked like:
FYI - he's not angry; he's trying to be in character :)
Thursday was our preschool's Halloween party. Little Guy held it together for the first half before his tolerance started to fray. By the time trunk-or-treat rolled around, he'd pretty much had it (tears, angry outbursts, etc.) I just kept him near me and we managed to get through. After the kids had left and the noise/activity level died down, Little Guy was much calmer and able to enjoy his bag of goodies.
On Saturday, there was an outdoor neighborhood dinner:
I wasn't as concerned about Little Guy going into this party because:
1) It was held outside, making the crowd and noise level more bearable
2) The party was only a half block away from our house, which meant I could easily take Little Guy home if necessary.
As it was, Little Guy found a pack of boys to roam with for the first part. After he tired of that, he wandered to a neighbor's house to check out the newly completed waterfall feature. He'd been over to this house several times before while "supervising" the progress, and our neighbor had even let him "work" on it. Little Guy was so excited to see the waterfall working that he spent the rest of the evening watching it run.
One thing I failed to mention is that Little Guy would not dress up as Aang for the neighborhood party. I begged, cajoled, and pleaded - but he absolutely refused to do it. When I pressed Little Guy about his reluctance, he told me he didn't want the paint on his head because it was too itchy. So, we went with last year's Spiderman costume.
Sensory issues...our daily nemesis :)
Fast forward a couple of days to Halloween night. Sis wanted to take Little Guy trick-or-treating around our street, and really wanted him to go as Aang. Little Guy finally agreed:
The deal was Sis and her boyfriend also had to have arrows painted on them; Little Guy even painted Sis's all by himself (sorry - no picture).
They were out for about 40 minutes, then Sis had to get ready for work. I gave Little Guy dinner and let him pass out candy for a bit, then he and I headed farther down into the neighborhood. We had a good time; the weather was perfect, and Little Guy was old enough to have greater stamina this year (I know we walked over a mile). The only issues we had were at the doors. Little Guy would ring once, then continue knocking until the door was answered. He would head straight for the candy without a word, only saying "trick-or-treat" if I prompted him. Sometimes, he would even step inside the house if he thought the person wasn't fast enough. And don't even get me started about eye contact. Needless to say, we had PLENTY of opportunities to practice his social skills :)
Although Little Guy struggled a bit with what to do at the doors, we were able to spend over an hour trick-or-treating without any major meltdowns. THIS WAS HUGE! Although life is still a roller coaster with our young son, I'm glad for times like this where we can savor "normal" moments.
And I just wasn't quite sure what to expect from Little Guy this year.
Halloween can be overwhelming for a child with sensory issues; itchy costumes, loud noises, bright colors - you get the picture. Added to these possible setbacks were Halloween celebrations spread out over three different days.
I worried it might be too much for my son.
He really wanted to dress up as Aang, the avatar airbender. My husband brought home a great children's outfit from China last spring, and we buzzed Little Guy's hair really short. We added a staff and painted on a blue arrow, and here's what he looked like:
Thursday was our preschool's Halloween party. Little Guy held it together for the first half before his tolerance started to fray. By the time trunk-or-treat rolled around, he'd pretty much had it (tears, angry outbursts, etc.) I just kept him near me and we managed to get through. After the kids had left and the noise/activity level died down, Little Guy was much calmer and able to enjoy his bag of goodies.
On Saturday, there was an outdoor neighborhood dinner:
I wasn't as concerned about Little Guy going into this party because:
1) It was held outside, making the crowd and noise level more bearable
2) The party was only a half block away from our house, which meant I could easily take Little Guy home if necessary.
As it was, Little Guy found a pack of boys to roam with for the first part. After he tired of that, he wandered to a neighbor's house to check out the newly completed waterfall feature. He'd been over to this house several times before while "supervising" the progress, and our neighbor had even let him "work" on it. Little Guy was so excited to see the waterfall working that he spent the rest of the evening watching it run.
One thing I failed to mention is that Little Guy would not dress up as Aang for the neighborhood party. I begged, cajoled, and pleaded - but he absolutely refused to do it. When I pressed Little Guy about his reluctance, he told me he didn't want the paint on his head because it was too itchy. So, we went with last year's Spiderman costume.
Sensory issues...our daily nemesis :)
Fast forward a couple of days to Halloween night. Sis wanted to take Little Guy trick-or-treating around our street, and really wanted him to go as Aang. Little Guy finally agreed:
The deal was Sis and her boyfriend also had to have arrows painted on them; Little Guy even painted Sis's all by himself (sorry - no picture).
They were out for about 40 minutes, then Sis had to get ready for work. I gave Little Guy dinner and let him pass out candy for a bit, then he and I headed farther down into the neighborhood. We had a good time; the weather was perfect, and Little Guy was old enough to have greater stamina this year (I know we walked over a mile). The only issues we had were at the doors. Little Guy would ring once, then continue knocking until the door was answered. He would head straight for the candy without a word, only saying "trick-or-treat" if I prompted him. Sometimes, he would even step inside the house if he thought the person wasn't fast enough. And don't even get me started about eye contact. Needless to say, we had PLENTY of opportunities to practice his social skills :)
Although Little Guy struggled a bit with what to do at the doors, we were able to spend over an hour trick-or-treating without any major meltdowns. THIS WAS HUGE! Although life is still a roller coaster with our young son, I'm glad for times like this where we can savor "normal" moments.
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