My son, Denver, does not like being woke up in the morning. He likes to wake up at his own speed. You can tell the difference in the mornings that he gets himself out of bed, he's simply a happier kid. Heaven help me if I have to wake him up in the middle of the night, he can get really angry then. Just a year ago he could go into a violent fit at being awakened. He's better about that now, but still doens't like it.
Today he got out of bed at the sound of me walking around the apartment. So out bounces a happy rested Denver. I get him some clothes, sometimes he picks them, and we have a race to get dressed. It's a great way to get him motivated to move in the morning or at others times as well. He usually wins, but not this morning. Next it's time to pick what he wants for breakfast. He get's his choice out of what we have, depending on if I'm up to making it. I won't make pancakes every day, after all.
After he has his breakfast it's time for the morning trouble spot. He used to be much better about taking his meds. Now, when I tell him it's time for both of us to take our meds, I get a screaming fit. He knocked his toy castle of the table and started kicking everything near him. He's learned to pull his punches on objects because he knows it will hurt if he lays into things at full strength. That's how I know it's a fit he can control. I offer him time out until he's ready to take his medicine for the day. He immediately comes over to me stomping, huffing and swatting at things near him. He takes his medicine and I take mine. I remind him gently that he knows what his day will be like if he doesn't take his medicine or I don't take mine. Then I send him to the couch to have a time out anyway because of the fit.
That earns me a loud, "I hate you" that I ignore and sit down to check my emails. He goes through a noise making stage and inevitably wants to know when he can get up.
"When do you think you can get up?"
"When I've been quiet."
"Have you?"
"No."
Back to my emails. He remains silent for several minutes. Normally time out ranges at one minute for each year of age. I give him a touch of slack on that sometimes, when his meds haven't kicked in yet. I'll go for three or four minutes. He pulls that off and I let him get up. Apology is given and we're off on the rest of our morning.
At about 7:30 I check his homework and sign his school papers. There's some reading done. He loves to read and it's quickly becoming as strong point of his. The only other thing about mornings is getting him to slow down. I swear he's going to wake the neighborhood. One of his stimming behaviors is to shake his head and hands rapidly while jumping up and down emitting a high pitched EEEEEEEE sound. This causes my poor eardrums (with my own sensitivity to sound)to go into a panic. I have found myself yelling STOP, more than once with my hands over my ears. It's hard to not do that, like trying not to let your leg kick when the dr hits that nerve in your knee. Most times, he does stop and he knows what sounds bug me. Sometimes he uses them on purpose, so I put him in time out on purpose.
As far as I'm concerned, using someones sensitivities to harass or harm is just like walking up and punching them. I won't allow it. If he does it to me, he'll do it to some kid at school. I won't allow that if I can help it.
Once the meds kick in he slows down and has much better control over his impulses that are very hyperactive up until then.
I give him time warnings before we are going to leave or I'm going to have him do his homework. That helps to keep from interrupting him from what he's doing. When I suddenly interrupt him from an activity he's absorbed in, I can get a stomping fit that just gets him into trouble and causes us a delays. So I give him a fifteen minute and maybe a five minute warning. If he gives me grief over those, it's time out. If he goes along with it all and does what he's supposed to, he gets a blue poker chip in the "go" jar for a reward later on.
At 8:00 it's time to put on shoes and make sure backpack is ready to go. Then, by 8:10 we are headed out the door. I'm very particular about when I get out the door to go somewhere. I hate being late or slow to get going. If we run late it means parking hassles and stress, I hate that. Yes, I do work with it and try to keep my stress down, but like most autistics I have my routines and I can be obsessive about them.
I wait with Denver at school until he's ready to go to class. Goodbye's are given with promise that I will be back when school lets out and the morning business is done.
As for non-school days, those are very relaxed and everyone gets to sleep in. Summer may bring some other changes in schedule, but we'll see when we get there.
Showing posts with label raising an autistic child. Show all posts
Showing posts with label raising an autistic child. Show all posts
Tuesday, June 2, 2009
Wednesday, May 20, 2009
Raising Denver Part 4: Diagnosis
A trip to a child therapist gave us our guiding arrow towards diagnosis for Denver and myself. She noted key points in his behavior; eye contact, lack of responsiveness to questions, strange organization rituals, and lack of understanding for social boundaries. Yes, I know small children aren't renound for their social understanding, however, they still have an age appropriate level of behavior. She suggested the name of a specialist, the only one in the area we lived in.
Testing for autism is not a quick process. It's a series of tests and questionaires. The questions are many and are about things that we notice in his behavior and reactions to the world around him. Asperger's Syndrome, what was this condition? I had never heard of it before and I started investigating it myself. I can already tell you that I saw myself in my son in many ways and I started to wonder if this condition could be hereditary?
I asked the doctor we were seeing and she said Asperger's can be very hereditary. I asked if I could be tested and we began my learning journey that would redefine everything I ever thought I knew about myself. Two months after my diagnosis, my mother contacted me to tell me that she had been diagnosed with the condition herself. She didn't know I was even being tested on the matter. So far, all of my nephews show strong traits towards this condition.
At home, Denver continued to surprise us and we feared for his safety overnight. We were met with a serious dilemna. We tried baby gates. With just one, he climbed over it. With two, we had the same result. Three worked to keep him in until he learned how to dismantle the baby gates. I already mentioned in the last part that child proof doorknobs were useless too. Authorities said that locking a child in a room is a fire hazard and considered child abuse.
So, what do you do when your toddler is so smart it's a hazard to his health? What ever you have to and you just don't tell anyone else. Yes, that means I put a latch on his door and once he was asleep, he would be shut in until morning. The fact of the matter is that, if there were a fire, an autistic child wouldn't be capable of escaping on his own anyway. If you take sensory overload into consideration, they would retreat or shut down. Denver would have hidden in his blankets if we couldn't get to him. Do you think he would be easily found? There are a lot of reports out there that say otherwise.
In case of a fire, our mission was to get Denver and get out either via the window or a front or back door. Then we would head for the street. So we had a plan and the door was only latched over night. Thankfully, Denver grew out of his extra adventures and we could stop latching the door. Sadly, many a family struggling with just this have been charged with child abuse or neglect when they are only trying to protect their child from him or herself. Had they allowed the child to roam free overnight and it caused injury or death, well, lets just say the charges were the same where we lived. So, since do and don't have the same outcome, you may as well "do" and protect your child. At least then they aren't getting into the knife drawer.
Denver's room had lots of blankets and large soft plush toys. Everything was soft and safe, so in the night, he had little to hurt himself with if anything. If you think that was the biggest challenge or that Denver was done throwing us curveballs, you'll have to see part five, because you've got another thing coming.
Testing for autism is not a quick process. It's a series of tests and questionaires. The questions are many and are about things that we notice in his behavior and reactions to the world around him. Asperger's Syndrome, what was this condition? I had never heard of it before and I started investigating it myself. I can already tell you that I saw myself in my son in many ways and I started to wonder if this condition could be hereditary?
I asked the doctor we were seeing and she said Asperger's can be very hereditary. I asked if I could be tested and we began my learning journey that would redefine everything I ever thought I knew about myself. Two months after my diagnosis, my mother contacted me to tell me that she had been diagnosed with the condition herself. She didn't know I was even being tested on the matter. So far, all of my nephews show strong traits towards this condition.
At home, Denver continued to surprise us and we feared for his safety overnight. We were met with a serious dilemna. We tried baby gates. With just one, he climbed over it. With two, we had the same result. Three worked to keep him in until he learned how to dismantle the baby gates. I already mentioned in the last part that child proof doorknobs were useless too. Authorities said that locking a child in a room is a fire hazard and considered child abuse.
So, what do you do when your toddler is so smart it's a hazard to his health? What ever you have to and you just don't tell anyone else. Yes, that means I put a latch on his door and once he was asleep, he would be shut in until morning. The fact of the matter is that, if there were a fire, an autistic child wouldn't be capable of escaping on his own anyway. If you take sensory overload into consideration, they would retreat or shut down. Denver would have hidden in his blankets if we couldn't get to him. Do you think he would be easily found? There are a lot of reports out there that say otherwise.
In case of a fire, our mission was to get Denver and get out either via the window or a front or back door. Then we would head for the street. So we had a plan and the door was only latched over night. Thankfully, Denver grew out of his extra adventures and we could stop latching the door. Sadly, many a family struggling with just this have been charged with child abuse or neglect when they are only trying to protect their child from him or herself. Had they allowed the child to roam free overnight and it caused injury or death, well, lets just say the charges were the same where we lived. So, since do and don't have the same outcome, you may as well "do" and protect your child. At least then they aren't getting into the knife drawer.
Denver's room had lots of blankets and large soft plush toys. Everything was soft and safe, so in the night, he had little to hurt himself with if anything. If you think that was the biggest challenge or that Denver was done throwing us curveballs, you'll have to see part five, because you've got another thing coming.
Monday, May 18, 2009
Raising Denver Part 3: Disturbances
Somewhere close to three years of age, Denver started having terrible fits. In these fits he would savagely slam his head against the floor or wall until physically weakened. Then he would pause, whimper and do it one more time if we didn't get to him fast enough. The fits were inconsolable and we got scratched and bit for trying to calm him. Nothing that we could see seemed to cause these fits either. They appeared truly random. His vocabulary grew by leaps and bounds and while this was wonderful, he some heartbreaking things to say. On one occassion that I grabbed him up from a fit, he asked me; "Daddy, why can't I stop?" That cut deeply and told me something really was wrong, and even he knew it. We didn't know yet he had Asperger's Syndrome.
We took him to an appointment with our doctor and he even had one of his fits right in front of him. The fact that nothing could comfort him struck a chord with the doctor and he prescribed a foam helmet. That required a new appointment elsewhere for a fitting. In two weeks he had his red helmet. He chose the color himself. We also discovered one thing that could console him in these fits. We covered him with a blanket. It wouldn't be long before that would make perfect sense.
On another facet he showed an interesting skill. We all know that kids get curious as they grow and start wanting to open cabinets and drawers to get to the treasures inside. Naturally we attempted to protect him from some of those treasures with child proof locks. They may have been child proof, but they weren't Denver proof. He took them apart with the nimble dexterity of a cat burglar. We had to change the style a couple of times and eventually got one that was just too hard on our own fingers for him. Still he would watch us intently any time we were near them.
He also showed a keen interest in the refrigerator in the middle of the night. We woke up several mornings to a keen mixture of foodstuffs on the kitchen floor. So we looked into making his bedroom more secure. Latching or locking his door was considered illegal in case of fire. It occurred to us that he would panic in a fire and we would have to get to him in any case. So we tried being crafty with child proof doorknobs. There's those laughable words again, 'child proof'. Yep, he took them apart with nimble ease. On one such morning, I staggered out of bed and to the kitchen.
"Daddy!" came a gleeful voice from above my head. I slowly looked up to where he sat atop the refridgerator. He held out a box of cereal with a beaming triumphant grin.
In part four I will tell you how we finally made it to his diagnosis and mine along with security measure that had to be adapted for Denver.
We took him to an appointment with our doctor and he even had one of his fits right in front of him. The fact that nothing could comfort him struck a chord with the doctor and he prescribed a foam helmet. That required a new appointment elsewhere for a fitting. In two weeks he had his red helmet. He chose the color himself. We also discovered one thing that could console him in these fits. We covered him with a blanket. It wouldn't be long before that would make perfect sense.
On another facet he showed an interesting skill. We all know that kids get curious as they grow and start wanting to open cabinets and drawers to get to the treasures inside. Naturally we attempted to protect him from some of those treasures with child proof locks. They may have been child proof, but they weren't Denver proof. He took them apart with the nimble dexterity of a cat burglar. We had to change the style a couple of times and eventually got one that was just too hard on our own fingers for him. Still he would watch us intently any time we were near them.
He also showed a keen interest in the refrigerator in the middle of the night. We woke up several mornings to a keen mixture of foodstuffs on the kitchen floor. So we looked into making his bedroom more secure. Latching or locking his door was considered illegal in case of fire. It occurred to us that he would panic in a fire and we would have to get to him in any case. So we tried being crafty with child proof doorknobs. There's those laughable words again, 'child proof'. Yep, he took them apart with nimble ease. On one such morning, I staggered out of bed and to the kitchen.
"Daddy!" came a gleeful voice from above my head. I slowly looked up to where he sat atop the refridgerator. He held out a box of cereal with a beaming triumphant grin.
In part four I will tell you how we finally made it to his diagnosis and mine along with security measure that had to be adapted for Denver.
Thursday, May 14, 2009
Raising Denver Part 2: Hurdles
Being 3 months early didn't slow Denver down one iota in weight gain to leave the hospital. The nursing staff remained pretty impressed with him through out. That's a comforting thought when you have a baby that can't leave the hospital until he weighs five pounds.
They only put him on oxygen once and that only lasted a few hours. I took a lot of time off work for my little man and my wife since she recovered from a c-section. By the time he finally came home they were having patience issues. Oh well.
We celebrated his home coming and spent lots of time getting used to a new schedule around the house. The first thing everyone noticed about Denver was his crying. He didn't. At least not as often as you would expect an infant to. This worried us but we forged forward and considered ourselves lucky to have such a happy baby. We checked on him more often but he sure made it worth it. He had to be about the most smiley baby I ever saw.
His little eyes would just light up whenever someone came to him. I'm still trying to find the photos so I can post them and show them to you. Even though he had reflux like my daughters did, and like I did, he didn't cry about that either.
As he grew he started into development toward crawling. Most babies roll first, not Denver. He started holding his head up and went to scooting, skipped most of crawling and started pulling himself up on things by 6 months. During this time, I did something really stupid.
Oh no! What could I have done? Well, we all teach our kids bad habits at some point in time. As it turns out, Denver and I liked to put our foreheads to each other (which made him giggle endlessly) and I would say "bonk bonk" (no I wouldn't actually bonk him, geez!) but he sure took it as a way to play. He became the head butting baby. His first word may have been Dad, but his favorite word was BONK. Out of the blue, if you held him too close, he would smile and slam his forehead right into your face. Yep, dumb Dad taught him that one and got to hear about it for months.
It was never enough to hurt him and that, at least, was a plus. As he started to walk, we noted that he always stayed up on tip toes. We didn't know at the time that this was a sign of things to come. He also developed hydrocephalis (water on the brain- and NO, not from headbutting people) but he developed past and overcame it. We had him in a little bit of therapy for the tip toe-ing but he soon moved past that too. He wasted little time on walking once he learned and jumped right to running.
Now a new problem presented itself. Denver wasn't responding to pain stimulus. He would fall, hit his head on a coffee table edge or a door and bounce right up and be off again. Not a single tear ever fell for the longest time. He was ticklish as anything, but if he ever hit anything very hard, until he was almost 3, nothing. It's scary when your child doesn't know if he hurts himself. You find yourself getting paranoid about everything he does.
Fortunately, today, that's not the case. He's seven now and knows pretty well, but in part 3 I'll show you just how scary it really got.
They only put him on oxygen once and that only lasted a few hours. I took a lot of time off work for my little man and my wife since she recovered from a c-section. By the time he finally came home they were having patience issues. Oh well.
We celebrated his home coming and spent lots of time getting used to a new schedule around the house. The first thing everyone noticed about Denver was his crying. He didn't. At least not as often as you would expect an infant to. This worried us but we forged forward and considered ourselves lucky to have such a happy baby. We checked on him more often but he sure made it worth it. He had to be about the most smiley baby I ever saw.
His little eyes would just light up whenever someone came to him. I'm still trying to find the photos so I can post them and show them to you. Even though he had reflux like my daughters did, and like I did, he didn't cry about that either.
As he grew he started into development toward crawling. Most babies roll first, not Denver. He started holding his head up and went to scooting, skipped most of crawling and started pulling himself up on things by 6 months. During this time, I did something really stupid.
Oh no! What could I have done? Well, we all teach our kids bad habits at some point in time. As it turns out, Denver and I liked to put our foreheads to each other (which made him giggle endlessly) and I would say "bonk bonk" (no I wouldn't actually bonk him, geez!) but he sure took it as a way to play. He became the head butting baby. His first word may have been Dad, but his favorite word was BONK. Out of the blue, if you held him too close, he would smile and slam his forehead right into your face. Yep, dumb Dad taught him that one and got to hear about it for months.
It was never enough to hurt him and that, at least, was a plus. As he started to walk, we noted that he always stayed up on tip toes. We didn't know at the time that this was a sign of things to come. He also developed hydrocephalis (water on the brain- and NO, not from headbutting people) but he developed past and overcame it. We had him in a little bit of therapy for the tip toe-ing but he soon moved past that too. He wasted little time on walking once he learned and jumped right to running.
Now a new problem presented itself. Denver wasn't responding to pain stimulus. He would fall, hit his head on a coffee table edge or a door and bounce right up and be off again. Not a single tear ever fell for the longest time. He was ticklish as anything, but if he ever hit anything very hard, until he was almost 3, nothing. It's scary when your child doesn't know if he hurts himself. You find yourself getting paranoid about everything he does.
Fortunately, today, that's not the case. He's seven now and knows pretty well, but in part 3 I'll show you just how scary it really got.
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