Wednesday, April 6, 2011
Words aren't just words, they have power......
I've been meaning to create another post but couldn't quite decide what to write, until this evening when I got home and logged on to Facebook and read about an incident of bullying that nearly sent me thru the roof! Why does society, parents, even children think that the word "retard/retarded" is funny or acceptable to use? It's used in movies like the Hangover to get laughs. People lose something or do something stupid and say "Oh, I'm such a retard" or "that was so retarded". If you are someone who says this, do you ever stop and really think about what you're saying? Do you know how stupid you sound saying this word? If you hear someone saying this, do you laugh at them and think it's funny? Or do you stop them and say cool it? I read today about a dear friend, a sister to me in our fight for our kids with autism, and shared her pain when I read that someone called her son a retard. I've experienced this a few times with Caleb. Christian doesn't want to go back to the local high school basketball camp in the summer because a kid called Caleb a retard last year. Caleb's been called this before, he comes home and tells me, but he doesn't seem to think it's a big deal and maybe that's a good thing. If my child could really, truly understand the true power of this word it would literally break my heart. This word holds so much power because to me, it's full of hate. This word ignites something in me that gets my heart racing and adrenaline pumping like I'm ready to fight the world. Yet, that's what I feel we are doing, fighting a world of ignorancy. It makes me even more angry to hear an autistic child called a retard. Here's a definition of the word retard that I thought I'd share; a person who is stupid, obtuse, or ineffective in some way. Well, my son is not stupid, he is far from obtuse, nor is he ineffective in any way. In fact, most people with autism (children and adults) are smarter than we may ever know. Just because they may at times seem emotionless, afraid of physical contact, or silent, does't mean they're not as smart as you or I. Do you know there is information that suggests Albert Einstein, Isaac Newton, Mozart, Hans Christian Andersen, Michelangelo, and Thomas Jefferson all showed signs of autism spectrum disorder? So, we have two of the worlds most famous and renowned scientists, a world famous artist, a famous author, a world famous musician and composer, and a president that showed signs of being autistic? Were these people stupid? Obtuse? Ineffective in any way? I don't think so. I am asking that we ALL do our part, assume responsibility for the words that come out of your mouth, educate those that use this word and encourage them to stop, educate children and let them know this word is not okay to say. Words aren't just words. Words have power. If you're someone who throws this word around without thinking, STOP. Think about what you're saying. Think about how you would feel if someone called your child a retard.
Friday, March 18, 2011
Luck with or without Lucky Charms!
So, if you're reading this then you've likely read the other post about Caleb's accident. This kid of ours is a wonder! He truly amazes us everyday and the last 24 hrs has been no exception.
When Casey and I met Caleb in the ER yesterday there was no screaming. Caleb was anxious, that was evident, but he wasn't crying, he wasn't screaming, he was watching everyone around him. It wasn't until he saw Casey and I that he got teary eyed, but still never cried. We went in and stood at his bedside, talking to him to try and keep him calm. He told us what happened as best he could with everyone buzzing around him and in and out of the room. When one of the doctors would walk into the room to talk to us, Caleb would hold his breath and try to listen and understand what the doctor was saying. As each one came in to do their evaluation, he would answer their questions, and tell them "Um, you see my knee right there, yeah, don't touch that!" He would stiffen up like a board when they examined him, but still never cried or screamed out.
It was literally as if Caleb had in a way detached himself from what was going on. He was given some pain medicine which obviously helped, however no amount of pain medicine could block out the images he was seeing. Casey and I feel that his sensory deprivation actually helped him during this. Caleb usually has a high tolerance for pain, but this was more than that. It's like he could see it, but not feel it. It's hard to explain and put it into words.
If you've ever met Caleb, you know the kid has a heart of gold. He's one of the most sensitive, caring, kind people you will ever meet. When my mom went in to see him for the first time before surgery, he looked at her and asked her if she would pray for him. We told him just how many people were praying for him, some total strangers to him, and he said "Really? Thank you!" This morning when the team of doctors and residents came in to make their rounds Caleb (without any guidance from Casey or I) thanked them for putting him back together.
By far, one of the sweetest things he did today involved one of the Orthopedic surgeons who worked on him. He came in this morning, had Caleb move his foot around, asked him if he hurt anywhere (to which he always replied No). Then Caleb asked him if he was one of the doctors who fixed him; the doctor said yes. Caleb then thanked him and offered him an orange he had sitting on his tray. He told the doctor it was the nicest thing he could think to do for the doctor who had helped to fix him. The doctor took the orange from Caleb along with another thank you. This brought tears to my eyes to watch his exchange with this doctor, as stranger to him, but someone who had helped him and he wanted to be sure the doctor was aware of his gratefullness to him.
Caleb also decided he wanted Lucky Charms for breakfast. When I got back up to the room with his cereal (and eggs AND bacon, the kid can eat!) he told us why he wanted the cereal. He said that yesterday hadn't been a lucky day for him and he needed some luck, so he wanted some Lucky Charms to bring him some good luck! That's our Caleb! Always saying something that sounds funny to us, but he takes it so literal and truly believes that the cereal would make him have some luck!
There is no way I was prepared for how Caleb would react in this situation. We could see that us crying only caused him to get really anxious and worry, so we were sure not to cry in front of him. He asked questions about what happened, what was going on, and what was going to happen. We answered him and he either accepted our answers or hit us with more questions. He was back to his usual, overtalkative self, within no time! That's our Caleb, catching the curve ball life throws at him, then throws one right back at it. This day could've been an emotional disaster, but it wasn't. I hope that my son's words to the doctors made them stop and realize that they do make a difference and take an 11yr olds gratitude to heart.
When Casey and I met Caleb in the ER yesterday there was no screaming. Caleb was anxious, that was evident, but he wasn't crying, he wasn't screaming, he was watching everyone around him. It wasn't until he saw Casey and I that he got teary eyed, but still never cried. We went in and stood at his bedside, talking to him to try and keep him calm. He told us what happened as best he could with everyone buzzing around him and in and out of the room. When one of the doctors would walk into the room to talk to us, Caleb would hold his breath and try to listen and understand what the doctor was saying. As each one came in to do their evaluation, he would answer their questions, and tell them "Um, you see my knee right there, yeah, don't touch that!" He would stiffen up like a board when they examined him, but still never cried or screamed out.
It was literally as if Caleb had in a way detached himself from what was going on. He was given some pain medicine which obviously helped, however no amount of pain medicine could block out the images he was seeing. Casey and I feel that his sensory deprivation actually helped him during this. Caleb usually has a high tolerance for pain, but this was more than that. It's like he could see it, but not feel it. It's hard to explain and put it into words.
If you've ever met Caleb, you know the kid has a heart of gold. He's one of the most sensitive, caring, kind people you will ever meet. When my mom went in to see him for the first time before surgery, he looked at her and asked her if she would pray for him. We told him just how many people were praying for him, some total strangers to him, and he said "Really? Thank you!" This morning when the team of doctors and residents came in to make their rounds Caleb (without any guidance from Casey or I) thanked them for putting him back together.
By far, one of the sweetest things he did today involved one of the Orthopedic surgeons who worked on him. He came in this morning, had Caleb move his foot around, asked him if he hurt anywhere (to which he always replied No). Then Caleb asked him if he was one of the doctors who fixed him; the doctor said yes. Caleb then thanked him and offered him an orange he had sitting on his tray. He told the doctor it was the nicest thing he could think to do for the doctor who had helped to fix him. The doctor took the orange from Caleb along with another thank you. This brought tears to my eyes to watch his exchange with this doctor, as stranger to him, but someone who had helped him and he wanted to be sure the doctor was aware of his gratefullness to him.
Caleb also decided he wanted Lucky Charms for breakfast. When I got back up to the room with his cereal (and eggs AND bacon, the kid can eat!) he told us why he wanted the cereal. He said that yesterday hadn't been a lucky day for him and he needed some luck, so he wanted some Lucky Charms to bring him some good luck! That's our Caleb! Always saying something that sounds funny to us, but he takes it so literal and truly believes that the cereal would make him have some luck!
There is no way I was prepared for how Caleb would react in this situation. We could see that us crying only caused him to get really anxious and worry, so we were sure not to cry in front of him. He asked questions about what happened, what was going on, and what was going to happen. We answered him and he either accepted our answers or hit us with more questions. He was back to his usual, overtalkative self, within no time! That's our Caleb, catching the curve ball life throws at him, then throws one right back at it. This day could've been an emotional disaster, but it wasn't. I hope that my son's words to the doctors made them stop and realize that they do make a difference and take an 11yr olds gratitude to heart.
The Accident
First, Casey and I would like to thank everyone so much for their prayers over the last 24 hrs for Caleb, us and the rest of our family. The Lord knows our family has faced it's fair share (and more) of tragedies over the last few years, yet each one seems to bring us closer to each other and closer to God. We know how powerful prayer is and know that they helped pull Caleb, and all of us through, these last 24 hrs. I ask that you please continue your prayers, as Caleb will face a tough few weeks and possibly months ahead. I've decided to do 2 posts. The first one will tell you what happened. The second post will tell you just how incredibly brave Caleb was and continues to be. In some ways I believe his autism actually helped him get thru this last day. But, on to what happened.
It's a call that every parent dreads and one that will literally stop your heart. I was sitting in the breakroom at work yesterday finishing up my lunch when Casey knocked on the door. Now I knew this could only mean something bad, either someone had died, there had been an accident of some kind, or he had gotten laid off. In an instant, I knew it was one of the first two. He pulled me out of the room, into the hall and told me that Caleb had been in an accident and was at the hospital and we needed to go.
The boys had been spending their spring break with Casey's mom and stepdad, like they've done the last few years. They love being out in the country where they can run all over, play at the creek, and any other adventures they can think of. They have ridden 4-wheelers, much to my dislike, but had always been cautious wearing helmets and staying close to the house and I know how much fun they always had riding. Well, there had been an accident.
From what we've pieced together from Caleb, Christian and Papa Keith, the boys were playing "Cops and Robbers" and Caleb was the robber. Caleb had already been in trouble for going to fast, but if you tell Caleb something once, you can tell him a hundred times and the kid still won't listen. He was up ahead of Christian and went to make a turn, too fast, and too close to the barb wire fence that lined the property by the road. Christian said the front tire of the 4-wheeler caught the barb wire, pulled Caleb into it and along it. Christian got off his bike, ran to the house to get Casey's mom. The 4-wheeler never tipped, instead Caleb was pinned to it by the barb wire. Papa Keith had to cut Caleb out of the fence. Caleb was able to make it into the truck on his own and they all loaded up and headed to the hospital.
Once at the hospital, Caleb was given his tetanus and the decision was made to transfer him to OU Trauma Center in Oklahoma City. This is one of, if not the best trauma center in Oklahoma. They see and treat the worst of the worst. Casey and I headed downtown to meet them at the ER. We knew it had to be pretty bad if they were sending him to OU and not to Norman Regional, the closest big hospital to them. I knew it wasn't a head or neck injury and I just kept repeating that to myself. It could've been much worse, it could've been much worse, it wasn't his head or neck, it wasn't his head or neck. I know I wasn't prepared for what I saw, but I knew it could all be fixed.
Caleb had a bad laceration to his outter right arm, at the bend of the elbow. He had a few deep lacerations to his abdomen and chest. Thank goodness the kid has meat on his bones or it could've been much worse. He had several knicks along his upper chest and onto his upper right arm and shoulder. The worst injury was to his outter right knee. The barb wire had pinned Caleb's knee against the hot engine (evidenced by a burn to his inner knee, thankfully not to severe), and he kept trying to move it off the engine, thus shredding the outter knee with the barb wire. It literally looked like Caleb had a shotgun blast to his outter knee. The MCL (medial collateral ligament) and bones were visible thru the gash.
Caleb made it to the trauma ER, was evaluated by the trauma team and several doctors. It was decided that he obviously needed surgery to repair the damage to his outter knee, as well as cleaning and closing the lacerations to his arm, abdomen and chest. They were worried about the knee joint, that there may have been some damage. Thankfully, there was no fractures/breaks of his knee, there were no major arteries or blood vessels severed in his arm, leg or chest/abdomen. Everything could be repaired and we can deal with scars.
Once the doctors had their plan in place, Caleb was transferred to Childrens Hospital across the way. He was taken immediately back to pre-op and prepped for surgery. 2 long hours later, the doctors had come out and told us that everything went great. All of the lacerations closed up nicely. His knee was cleaned out and there was no damage to the joint, ligaments or tendons in it. Caleb was groggy most of the night, but this morning was back to his usual self. The doctors felt he could be released today and follow up with them in the office on Monday. As I'm typing this, he's in his bed, playing his DSI. He is in an immobilizing knee/leg brace, to help ensure the sutures keep the site on his knee closed and the skin intact. There could be a chance of breakdown of this skin and a graft would be required. However, the surgeons were hopeful that this wouldn't happen.
So, that's what happened. It was an accident, no one is to blame. It was scary as hell for all of us, but God was with him and kept him from greater harm. The prayers of all of you have definitely helped him to handle this as well as he has and I know it has done the same for Casey and I. So again I wish to thank you all for your continued prayers. He's a strong kid and he will get thru this.
It's a call that every parent dreads and one that will literally stop your heart. I was sitting in the breakroom at work yesterday finishing up my lunch when Casey knocked on the door. Now I knew this could only mean something bad, either someone had died, there had been an accident of some kind, or he had gotten laid off. In an instant, I knew it was one of the first two. He pulled me out of the room, into the hall and told me that Caleb had been in an accident and was at the hospital and we needed to go.
The boys had been spending their spring break with Casey's mom and stepdad, like they've done the last few years. They love being out in the country where they can run all over, play at the creek, and any other adventures they can think of. They have ridden 4-wheelers, much to my dislike, but had always been cautious wearing helmets and staying close to the house and I know how much fun they always had riding. Well, there had been an accident.
From what we've pieced together from Caleb, Christian and Papa Keith, the boys were playing "Cops and Robbers" and Caleb was the robber. Caleb had already been in trouble for going to fast, but if you tell Caleb something once, you can tell him a hundred times and the kid still won't listen. He was up ahead of Christian and went to make a turn, too fast, and too close to the barb wire fence that lined the property by the road. Christian said the front tire of the 4-wheeler caught the barb wire, pulled Caleb into it and along it. Christian got off his bike, ran to the house to get Casey's mom. The 4-wheeler never tipped, instead Caleb was pinned to it by the barb wire. Papa Keith had to cut Caleb out of the fence. Caleb was able to make it into the truck on his own and they all loaded up and headed to the hospital.
Once at the hospital, Caleb was given his tetanus and the decision was made to transfer him to OU Trauma Center in Oklahoma City. This is one of, if not the best trauma center in Oklahoma. They see and treat the worst of the worst. Casey and I headed downtown to meet them at the ER. We knew it had to be pretty bad if they were sending him to OU and not to Norman Regional, the closest big hospital to them. I knew it wasn't a head or neck injury and I just kept repeating that to myself. It could've been much worse, it could've been much worse, it wasn't his head or neck, it wasn't his head or neck. I know I wasn't prepared for what I saw, but I knew it could all be fixed.
Caleb had a bad laceration to his outter right arm, at the bend of the elbow. He had a few deep lacerations to his abdomen and chest. Thank goodness the kid has meat on his bones or it could've been much worse. He had several knicks along his upper chest and onto his upper right arm and shoulder. The worst injury was to his outter right knee. The barb wire had pinned Caleb's knee against the hot engine (evidenced by a burn to his inner knee, thankfully not to severe), and he kept trying to move it off the engine, thus shredding the outter knee with the barb wire. It literally looked like Caleb had a shotgun blast to his outter knee. The MCL (medial collateral ligament) and bones were visible thru the gash.
Caleb made it to the trauma ER, was evaluated by the trauma team and several doctors. It was decided that he obviously needed surgery to repair the damage to his outter knee, as well as cleaning and closing the lacerations to his arm, abdomen and chest. They were worried about the knee joint, that there may have been some damage. Thankfully, there was no fractures/breaks of his knee, there were no major arteries or blood vessels severed in his arm, leg or chest/abdomen. Everything could be repaired and we can deal with scars.
Once the doctors had their plan in place, Caleb was transferred to Childrens Hospital across the way. He was taken immediately back to pre-op and prepped for surgery. 2 long hours later, the doctors had come out and told us that everything went great. All of the lacerations closed up nicely. His knee was cleaned out and there was no damage to the joint, ligaments or tendons in it. Caleb was groggy most of the night, but this morning was back to his usual self. The doctors felt he could be released today and follow up with them in the office on Monday. As I'm typing this, he's in his bed, playing his DSI. He is in an immobilizing knee/leg brace, to help ensure the sutures keep the site on his knee closed and the skin intact. There could be a chance of breakdown of this skin and a graft would be required. However, the surgeons were hopeful that this wouldn't happen.
So, that's what happened. It was an accident, no one is to blame. It was scary as hell for all of us, but God was with him and kept him from greater harm. The prayers of all of you have definitely helped him to handle this as well as he has and I know it has done the same for Casey and I. So again I wish to thank you all for your continued prayers. He's a strong kid and he will get thru this.
Thursday, March 10, 2011
Vaccines....the cause or not?
So, I've been thinking since before I started this blog how I would broach this subject. This is a tricky one and you'll get different opinions from different people on it. Even parents of autistic kids will disagree as to whether or not they feel vaccines are the cause of autism. I will say that my views and opinions are just that, MINE. They are based off of medical information that I have been exposed to and studied and have seen with my own two eyes. If you don't like my view on this subject, fine, to each his own. But again....this is my story.
So much has been said the last few years especially in the media about whether or not vaccines play a role in autism. As we all know the media can be a double edged sword. It's great in the fact that it can bring attention to much needed topics, like autism. However, it's bad when people use it to solely promote their agenda. I'm sure many of you have heard Jenny McCarthy's views on vaccines causing autism and the attack she launched on the CDC a few years ago. As a person in the medical community AND a mother of an autistic child I was outraged! In reality what she did was scare a bunch of parents into opting out of vaccines for their children. Vaccines that have been around for years, we all got them or a form of them as children, and yet here we are. Vaccines save lives. Autism doesn't kill you, but complications from measles, mumps, rubella, even whooping cough (pertussis) can.
Now, I will say one good thing that came off of Ms. McCarthy's soap box. She did bring much needed awareness to autism and the autism disorder spectrum. She had her celebrity platform on which to speak her opinions, and she did. She got the word out that autism is being diagnosed more now that ever, which is true. More awareness of the disorder will equal more children (and even adults) being diagnosed. Information is HUGE when you are empty handed and searching for answers. As a parent of an autistic child, or any child with a disorder/disease, you want answers. What happens when we don't get the answers we're searching for? We want something or someone to blame. It doesn't help matters, but it makes us feel a little bit better, for awhile.
As I said before, Caleb and his brother received their vaccines (including the controversial MMR) from the same lot, given at the same clinic, on the same day within minutes of each other. Neither child had any post-vaccine fevers, no physical reaction to the vaccine site, didn't even fuss much afterwards. It was shortly before the time Caleb received his vaccines that we started to notice changes in his behavior. The behavior issues progressed as he got older. There was not a dramatic increase in his symptoms after his second dose of the MMR vaccine 2 years after the inital dose. So, in my opinion, vaccines did not cause my child to be autistic.
Some food for thought on the subject. If more parents are opting out of vaccines for their children, why are more children being diagnosed with autism than ever before? Here are some facts from www.autismspeaks.org. It's estimated that 1 in every 110 children will be diagnosed with some form of autism spectrum disorder, making it more common than childhood cancer, juvenile diabetes, and pediatric AIDS combined. Current estimates are that in the US alone, one out of every 70 boys is diagnosed with autism.
As a parent you have every right to question anything and everything when it comes to your children and their well being, but, be informed. Do your own research and do what feels right to you. If you feel that too many vaccines are being given at one time, then simply tell your doctor that you want them split up into separate administrations. I've done this with my kids and their pediatrician.
So much has been said the last few years especially in the media about whether or not vaccines play a role in autism. As we all know the media can be a double edged sword. It's great in the fact that it can bring attention to much needed topics, like autism. However, it's bad when people use it to solely promote their agenda. I'm sure many of you have heard Jenny McCarthy's views on vaccines causing autism and the attack she launched on the CDC a few years ago. As a person in the medical community AND a mother of an autistic child I was outraged! In reality what she did was scare a bunch of parents into opting out of vaccines for their children. Vaccines that have been around for years, we all got them or a form of them as children, and yet here we are. Vaccines save lives. Autism doesn't kill you, but complications from measles, mumps, rubella, even whooping cough (pertussis) can.
Now, I will say one good thing that came off of Ms. McCarthy's soap box. She did bring much needed awareness to autism and the autism disorder spectrum. She had her celebrity platform on which to speak her opinions, and she did. She got the word out that autism is being diagnosed more now that ever, which is true. More awareness of the disorder will equal more children (and even adults) being diagnosed. Information is HUGE when you are empty handed and searching for answers. As a parent of an autistic child, or any child with a disorder/disease, you want answers. What happens when we don't get the answers we're searching for? We want something or someone to blame. It doesn't help matters, but it makes us feel a little bit better, for awhile.
As I said before, Caleb and his brother received their vaccines (including the controversial MMR) from the same lot, given at the same clinic, on the same day within minutes of each other. Neither child had any post-vaccine fevers, no physical reaction to the vaccine site, didn't even fuss much afterwards. It was shortly before the time Caleb received his vaccines that we started to notice changes in his behavior. The behavior issues progressed as he got older. There was not a dramatic increase in his symptoms after his second dose of the MMR vaccine 2 years after the inital dose. So, in my opinion, vaccines did not cause my child to be autistic.
Some food for thought on the subject. If more parents are opting out of vaccines for their children, why are more children being diagnosed with autism than ever before? Here are some facts from www.autismspeaks.org. It's estimated that 1 in every 110 children will be diagnosed with some form of autism spectrum disorder, making it more common than childhood cancer, juvenile diabetes, and pediatric AIDS combined. Current estimates are that in the US alone, one out of every 70 boys is diagnosed with autism.
As a parent you have every right to question anything and everything when it comes to your children and their well being, but, be informed. Do your own research and do what feels right to you. If you feel that too many vaccines are being given at one time, then simply tell your doctor that you want them split up into separate administrations. I've done this with my kids and their pediatrician.
Monday, March 7, 2011
Starting School
Ok, so I'm completely exhausted and coming down off our basketball season ending high, so please bear with me!
Ok, so you've heard how the first 4 years of Caleb's life is and how we were introduced to autism. Now we'll flash forward a bit to school years. I honestly believe that God himself has had a hand in picking the right teachers to work with Caleb. We have been so unbelieveably blessed since Dayschool to have the best teachers who are so patient and know just how to work with Caleb. Everytime we go to the school, whether it was at Mustang Valley or their current school Mustang Elementary, we cannot walk the halls without one of the teachers (not even necessarily the boys home room teacher!) telling us what wonderful, smart, loving, polite boys we have. I feel blessed to call them both my sons and my heart just swells with pride when I'm told this.
So, kindergarten was a huge transition period for Caleb. He went from a Dayschool setting in a class with 8-10 kids and going 2 days a week, to a class of 20 and going half day 5 days a week. Again we faced the first 30 mins of the day with crying, screaming, flailing and hiding under tables and in corners. As much as his teacher would try to coax him out, he would fight it. I believe that God as well placed little angels in his class. It's our nature as little girls and women to "mother" others. Caleb soon had several little "mothers" in his class! These little girls would work with him, on their own, without being asked and help him move from station to station in their class. To not sound too cliche (and this popped into my head last night watching tv), they were his Jenny (Forrest Gump). These little angels were determined to not let Caleb get behind. He seemed to respond well to them and began to edge his way into the circle that was his class. We did have the boys in the same kindergarten class because we thought that it would help Caleb transition a little better, knowing at least his brother was in the room full of strangers.
Towards the end of kindergarten we met for Caleb's IEP. This is a meeting with teachers and specialists at the school (speech therapists, occupational and physical therapists) to get a game plan for going into first grade. We knew that splitting the boys up was a must. Caleb had depended on Christian to speak for him and Christian didn't oblige, it was his brother and he knew him better than anyone. We also had to look at it from Christian's point of view. It wasn't his responsibility or fair to him to be his brother's keeper, his voice. But we also had faith in the teachers, Caleb and God that He would be his protector and see him through.
Caleb's days were filled with 20 mins of physical therapy 3 times a week, 45 mins of speech therapy 5 days a week, and 30 minutes of occupational therapy 3 times a week. All of this on top of the school work that comes in a regular class. In physical therapy Caleb did exercises that worked on his balance, agility and learning and being aware of the space around him. Occupational therapy was spent learning how to fasten a button on a shirt, how to hold a pencil/crayon the correct way (which he still refuses to do unless told!), and wearing weighted vests to keep him calm. I know this sounds odd, but it actually works! It's not a punishment. In the next paragraph I'll explain.
Most autistic kids have a sensory disorder. Meaning one or more of their senses (smelling, hearing, visual, touch, taste) are heightened and extremely sensitive. Caleb's hearing was extremely sensitive. He could not attend assemblies because they were held in a tiled cafeteria room. We all know how sound bounces off the tile. Well, imagine that sound at a level 4, what you would normally hear in a room full of kids talking at the same time, sound bouncing off the tiled floor. Now, take the volume level and crank it up to 10, that was Caleb's "normal" setting for hearing. Normal noise to you and I was amplified to him. Anytime kids got loud, his hands would immediately go to his ears. It wasn't always just the sound. The sound of over a hundred kids talking and laughing at the same time just severely overstimulated his brain. His brain couldn't handle it and it would throw him into a screaming meltdown.
I am so thankful that Caleb's sense of touch isn't as heightened as other autistic kids. There are some autistic kids who's brains cannot process the sense and pressure of a hug. Could you imagine not being able to hug your own child because it causes them physical and emotional pain? Caleb is a loveable child. He will hug you, but in his way. His hugs are more of a side hug, like you would hug a stranger. If you try to get him in a bear hug, he'll start to struggle to get out of it. It's not uncommon for Caleb to hug one of us for something so completely random like buying his favorite cereal; that's just Caleb! My heart breaks for the parents who can't share in this physical and emotional connection with their children.
Caleb's sense of smell is also heightened. The kid can smell ANYTHING! It's not so pronouced as it once was, but he smells EVERYTHING before he eats it. If it doesn't smell right, look right or have the right texture, he won't eat it, simple as that, there's no compromise. This has been difficult for some people to understand. When you have a kid who's diet is severely limited because of taste, smell AND texture of food you feel like you're feeding them the same things, which doesn't bother them. It's not a defiance thing, they don't eat it to be difficult and stubborn, they don't eat it because to them it isn't right. I've had several people ask me about the gluten free diet that seems to be all the rage with autistic kids and parents. Granted there are more food options that are gluten free. HOWEVER, when you already have a kid who's diet is severely limited, and you start taking away foods with gluten in them, what are they left to eat?! Caleb does not have some gastrointestinal issues that some other kids have, which is another reason their parents restrict their gluten intake. Again, this is my view on this. It make work for some kids, but isn't right for my son.
So, I hope this information will make you stop and think a little. Remember when you hug your kids are night, not to take it for granted, because some parents are denied that opportunity because of autism. Remember to be thankful that even though your kids may make a fuss over having to eat their vegetables, it's not because they smell, appear or taste so revolting it throws them into a screaming fit when you make them eat it before getting up from the table. Remember that when you walk into your hometown's high school football game, the band is playing and the crowd is cheering, your kid isn't the one covering his ears because the noise is just too much. These are some of the many situations we are forced to face daily because of autism.
(sorry for the rambling and jumping all over the place, again I am exhausted tonite!!! thanks for bearing with me!)
Until next time......
Ok, so you've heard how the first 4 years of Caleb's life is and how we were introduced to autism. Now we'll flash forward a bit to school years. I honestly believe that God himself has had a hand in picking the right teachers to work with Caleb. We have been so unbelieveably blessed since Dayschool to have the best teachers who are so patient and know just how to work with Caleb. Everytime we go to the school, whether it was at Mustang Valley or their current school Mustang Elementary, we cannot walk the halls without one of the teachers (not even necessarily the boys home room teacher!) telling us what wonderful, smart, loving, polite boys we have. I feel blessed to call them both my sons and my heart just swells with pride when I'm told this.
So, kindergarten was a huge transition period for Caleb. He went from a Dayschool setting in a class with 8-10 kids and going 2 days a week, to a class of 20 and going half day 5 days a week. Again we faced the first 30 mins of the day with crying, screaming, flailing and hiding under tables and in corners. As much as his teacher would try to coax him out, he would fight it. I believe that God as well placed little angels in his class. It's our nature as little girls and women to "mother" others. Caleb soon had several little "mothers" in his class! These little girls would work with him, on their own, without being asked and help him move from station to station in their class. To not sound too cliche (and this popped into my head last night watching tv), they were his Jenny (Forrest Gump). These little angels were determined to not let Caleb get behind. He seemed to respond well to them and began to edge his way into the circle that was his class. We did have the boys in the same kindergarten class because we thought that it would help Caleb transition a little better, knowing at least his brother was in the room full of strangers.
Towards the end of kindergarten we met for Caleb's IEP. This is a meeting with teachers and specialists at the school (speech therapists, occupational and physical therapists) to get a game plan for going into first grade. We knew that splitting the boys up was a must. Caleb had depended on Christian to speak for him and Christian didn't oblige, it was his brother and he knew him better than anyone. We also had to look at it from Christian's point of view. It wasn't his responsibility or fair to him to be his brother's keeper, his voice. But we also had faith in the teachers, Caleb and God that He would be his protector and see him through.
Caleb's days were filled with 20 mins of physical therapy 3 times a week, 45 mins of speech therapy 5 days a week, and 30 minutes of occupational therapy 3 times a week. All of this on top of the school work that comes in a regular class. In physical therapy Caleb did exercises that worked on his balance, agility and learning and being aware of the space around him. Occupational therapy was spent learning how to fasten a button on a shirt, how to hold a pencil/crayon the correct way (which he still refuses to do unless told!), and wearing weighted vests to keep him calm. I know this sounds odd, but it actually works! It's not a punishment. In the next paragraph I'll explain.
Most autistic kids have a sensory disorder. Meaning one or more of their senses (smelling, hearing, visual, touch, taste) are heightened and extremely sensitive. Caleb's hearing was extremely sensitive. He could not attend assemblies because they were held in a tiled cafeteria room. We all know how sound bounces off the tile. Well, imagine that sound at a level 4, what you would normally hear in a room full of kids talking at the same time, sound bouncing off the tiled floor. Now, take the volume level and crank it up to 10, that was Caleb's "normal" setting for hearing. Normal noise to you and I was amplified to him. Anytime kids got loud, his hands would immediately go to his ears. It wasn't always just the sound. The sound of over a hundred kids talking and laughing at the same time just severely overstimulated his brain. His brain couldn't handle it and it would throw him into a screaming meltdown.
I am so thankful that Caleb's sense of touch isn't as heightened as other autistic kids. There are some autistic kids who's brains cannot process the sense and pressure of a hug. Could you imagine not being able to hug your own child because it causes them physical and emotional pain? Caleb is a loveable child. He will hug you, but in his way. His hugs are more of a side hug, like you would hug a stranger. If you try to get him in a bear hug, he'll start to struggle to get out of it. It's not uncommon for Caleb to hug one of us for something so completely random like buying his favorite cereal; that's just Caleb! My heart breaks for the parents who can't share in this physical and emotional connection with their children.
Caleb's sense of smell is also heightened. The kid can smell ANYTHING! It's not so pronouced as it once was, but he smells EVERYTHING before he eats it. If it doesn't smell right, look right or have the right texture, he won't eat it, simple as that, there's no compromise. This has been difficult for some people to understand. When you have a kid who's diet is severely limited because of taste, smell AND texture of food you feel like you're feeding them the same things, which doesn't bother them. It's not a defiance thing, they don't eat it to be difficult and stubborn, they don't eat it because to them it isn't right. I've had several people ask me about the gluten free diet that seems to be all the rage with autistic kids and parents. Granted there are more food options that are gluten free. HOWEVER, when you already have a kid who's diet is severely limited, and you start taking away foods with gluten in them, what are they left to eat?! Caleb does not have some gastrointestinal issues that some other kids have, which is another reason their parents restrict their gluten intake. Again, this is my view on this. It make work for some kids, but isn't right for my son.
So, I hope this information will make you stop and think a little. Remember when you hug your kids are night, not to take it for granted, because some parents are denied that opportunity because of autism. Remember to be thankful that even though your kids may make a fuss over having to eat their vegetables, it's not because they smell, appear or taste so revolting it throws them into a screaming fit when you make them eat it before getting up from the table. Remember that when you walk into your hometown's high school football game, the band is playing and the crowd is cheering, your kid isn't the one covering his ears because the noise is just too much. These are some of the many situations we are forced to face daily because of autism.
(sorry for the rambling and jumping all over the place, again I am exhausted tonite!!! thanks for bearing with me!)
Until next time......
Sunday, March 6, 2011
Where to begin??
I guess I could begin by talking about how autism entered our life and became a part of our daily vocabulary. Our oldest sons are twins, Caleb and Christian. They were born 20 minutes apart, only 2 weeks early and Caleb was actually the healthier of the two following their birth. Both boys hit all of their milestones during their first year. They both cut teeth a week apart at 7 months old. They both were walking then running at 10 months old, both could speak several words before they were a year old. They were healthy, happy babies! Both boys got their vaccinations, at the same time, from the same lot (vaccines are manufactured in lots, basically a batch), neither had any fevers or complications from their vaccines. This is important to me that I mention this, because I am not a parent who believes that vaccines cause autism.
Life was great with my two boys! Around the time Caleb was 3 though, we started to notice a gradual change. He became very anxious, even around family. When we'd walk in a room, especially a family gathering, he would hide his face and cover his ears. He would scream and cry if we tried to keep him in the room with everyone. We were finally forced to put him in a bedroom where it was quieter. This is how Thanksgiving and Christmas were spent around his 4th birthday. We didn't understand why he did this, we thought maybe he was just acting out. Christian seemed fine with the crowds and noise. The noise didn't seem excessively loud to us, only to him.
This all began to happen in late 2003. In 2003, there was still little known about autism and it definitely did not have the public awareness that it does now. When someone said the word Autism, you'd instantly think of Dustin Hoffman in Rain Man. I know I did. We had no clue what autism was really and had no clue as to what to even look for to diagnose it. It was just a word to describe a character in a movie to me, it certainly wasn't my child.
It wasn't until Caleb was enrolled in our church's dayschool program that things began to get worse and were becoming more evident to others around us. Caleb would spend the first 30 minutes after he was dropped off crying, sometimes it went on longer. The classroom had a bed that was used as a reading corner, he would often go over to it and cover his face and cry or just lay there. He didn't participate much in the activities that the other kids were doing. He was very clingy to his teacher. We didn't understand what was going on, we just thought maybe he was acting out because he'd rather be at home with grandma. Finally one day his teacher approached me and mentioned autism. Again, my mind immediately went to Rain Man and I got mad. More than mad, I was pissed! How dare someone accuse my son of being that way! Sure, he could be difficult at times, but he wasn't slow or disabled! After a few days I calmed down and turned to the good ole internet. I found check list after check list of signs of autism. Soon I noticed there were more checks on Caleb's list then non-checked signs. I honestly can say I was still in denial. It would take a few more years before I would finally accept those words I did not want to hear "Your child has autism."
The end of this post is near, I promise! I had to give you some background before I can continue the story. It's the preface to our story, our journey into a life with autism. I have much, much more to share and that will come.
Life was great with my two boys! Around the time Caleb was 3 though, we started to notice a gradual change. He became very anxious, even around family. When we'd walk in a room, especially a family gathering, he would hide his face and cover his ears. He would scream and cry if we tried to keep him in the room with everyone. We were finally forced to put him in a bedroom where it was quieter. This is how Thanksgiving and Christmas were spent around his 4th birthday. We didn't understand why he did this, we thought maybe he was just acting out. Christian seemed fine with the crowds and noise. The noise didn't seem excessively loud to us, only to him.
This all began to happen in late 2003. In 2003, there was still little known about autism and it definitely did not have the public awareness that it does now. When someone said the word Autism, you'd instantly think of Dustin Hoffman in Rain Man. I know I did. We had no clue what autism was really and had no clue as to what to even look for to diagnose it. It was just a word to describe a character in a movie to me, it certainly wasn't my child.
It wasn't until Caleb was enrolled in our church's dayschool program that things began to get worse and were becoming more evident to others around us. Caleb would spend the first 30 minutes after he was dropped off crying, sometimes it went on longer. The classroom had a bed that was used as a reading corner, he would often go over to it and cover his face and cry or just lay there. He didn't participate much in the activities that the other kids were doing. He was very clingy to his teacher. We didn't understand what was going on, we just thought maybe he was acting out because he'd rather be at home with grandma. Finally one day his teacher approached me and mentioned autism. Again, my mind immediately went to Rain Man and I got mad. More than mad, I was pissed! How dare someone accuse my son of being that way! Sure, he could be difficult at times, but he wasn't slow or disabled! After a few days I calmed down and turned to the good ole internet. I found check list after check list of signs of autism. Soon I noticed there were more checks on Caleb's list then non-checked signs. I honestly can say I was still in denial. It would take a few more years before I would finally accept those words I did not want to hear "Your child has autism."
The end of this post is near, I promise! I had to give you some background before I can continue the story. It's the preface to our story, our journey into a life with autism. I have much, much more to share and that will come.
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