When we first moved to Minnesota, we decided to bring a dog into our family. We went to the local humane society and picked out a sweet boy. We named him Buster and he made his way into our hearts. For the first couple of weeks after we adopted Buster, Jack was terrified of him. He would climb on the couch, chair, table - anything that would keep him off of the floor. He rarely wanted to be in the same room as Buster. But, then he slowly came around and started loving Buster. He would give him hugs and play with him and talk to him.
The next part of this story is really difficult for me to write. In doing this, I am admitting that my child has "issues." That there is something wrong. And sometimes that's hard to put into words.
As autism began to rear its ugly head and Jack's behaviors became worse, some of his aggression was taken out on Buster. I won't go into too much detail here (for fear of being judged), but let's just say that Jack's actions toward Buster went far beyond how any "typical" 4 year old would treat a dog. It was more than just "rough-housing." We talked to teachers. We talked to therapists. We talked to friends. We tried every piece of advice given to us. Nothing worked. It just got worse.
Several months ago, we put out a plea to our friends on Facebook. We asked if anyone might be able to provide a good home for our animals (we were having the same problems with the cat, too). One of our friends offered to take Buster into their home.
So, last Friday, we loaded Buster up in the car one last time and drove out to the country, where his new family lives. He had previously spent some time with this family, so he was familiar with them. We had talked to Jack all day about where Buster was going and that we weren't going to pick him up and that he was going to live at a different home now. We never told him that we were doing this because of his actions - I wasn't about to make him feel guilty for the dog going away. This was already hard enough on all of us. We weren't quite sure if Jack was understanding what would happen, but tried to do our best to explain it to him. Jack had picked out a toy for Buster to keep with him - a stuffed kitty. I told Jack that Buster would play with the stuffed kitty whenever he missed us, and that he would remember us.
As we drove away from our friends' home, Jack was quiet. I asked him if he missed Buster. Then the tears came. He cried. And cried. He said he was sad about Buster and wanted him to come to OUR house. I cried. (I'm crying now.) I am sure that part of his crying was exhaustion (it was a loooong day and late night for him), but I know that he really felt that emotion of missing Buster.
The next day, I went to Target and found Jack a big stuffed dog. I brought him home and told Jack that he could give the puppy a hug whenever he missed Buster. Jack named him Horton (we were in the middle of watching "Horton Hears a Who" when Jack named the dog) and he sleeps with him.
Life is actually quieter in our house now. There is a lot less stress about Jack's mis-treatment of the dog and the constant discipline surrounding that. We don't have a dog cowering in the corners when Jack gets wired. Jack is doing well. He talks about Buster sometimes, but not too often. He doesn't seem sad about it anymore. It is one less thing for us to worry about right now. We know we made the right decision - but that definitely didn't make it any easier.
Wednesday, June 2, 2010
Tuesday, May 18, 2010
The Biggest LOSER
So, I'm sitting here watching The Biggest Loser. I am annoyed with it. Let me count the ways...
1) None of the final 4 contestants are married or have children. Therefore, they can spend 8 hours/day at the gym and not have to worry about missing out on things at home.
2) So, so, so unrealistic. Daris (one of the contestants) ate cereal at 4 am. They made it sound like he had just committed the ultimate sin. How dare he eat?!?! It is completely unrealistic to expect people to train for a marathon and not eat (enough to fuel their bodies). It is completely unrealistic to expect people to spend all day in a gym. It is completely unrealistic to expect people to eat extremely restricted diets 24/7. The contestants are living in a lab when they're on "The Ranch." Their exercise, diets, and activities are all controlled. When they leave, it's not controlled. It's not too hard to imagine what will happen when they're set free.
3) Who says that it's impossible to be happy and overweight? They make the assumption that if you're overweight, you're automatically depressed about it. While I agree that there are health risks associated with obesity, and I agree that you should do something to help alleviate those health risks, I disagree that you must be miserable if you're overweight. If someone is healthy, happy and they happen to be overweight...they should be left alone.
4) While the contestants were running a marathon, previous season winners met them at various points to run the race with them. All but one of the previous winners had put back on a considerable amount of weight. The show doesn't talk about this. Sure, they have "made an example" out of prior contestant Eric (who gained back most of his weight - and he is going to take it all off again - and then....), but I think that a good portion of ex-Biggest Losers have put back on a lot of their weight. Why? Back to #2. It is completely unrealistic to expect people to eat/workout/live the lifestyle that they live on "The Ranch." The Biggest Loser is setting people up for failure.
5) What kind of life do you have when you neglect your friends and family? When you have to leave parties early because no one understands your "stress?" When you can't go out to dinner with your family because the restaurant doesn't serve "your" foods? When you miss your kids' activities because you have to go to the gym? What kind of life is that?
6) Since when is losing 13 lbs. in a month a failure? I hate how they make it sound like such a horrible thing when a contestant loses anything less than an insane amount of weight. They are praised for losing unhealthy amounts of weight, and looked down upon for losing the "recommended" amount of weight (1 - 2 lbs./week). So when these contestants start getting closer to their "ideal" weight, and their weight loss slows down, I can only assume that they will be extremely disappointed with their average weight loss.
Done with my rant.
1) None of the final 4 contestants are married or have children. Therefore, they can spend 8 hours/day at the gym and not have to worry about missing out on things at home.
2) So, so, so unrealistic. Daris (one of the contestants) ate cereal at 4 am. They made it sound like he had just committed the ultimate sin. How dare he eat?!?! It is completely unrealistic to expect people to train for a marathon and not eat (enough to fuel their bodies). It is completely unrealistic to expect people to spend all day in a gym. It is completely unrealistic to expect people to eat extremely restricted diets 24/7. The contestants are living in a lab when they're on "The Ranch." Their exercise, diets, and activities are all controlled. When they leave, it's not controlled. It's not too hard to imagine what will happen when they're set free.
3) Who says that it's impossible to be happy and overweight? They make the assumption that if you're overweight, you're automatically depressed about it. While I agree that there are health risks associated with obesity, and I agree that you should do something to help alleviate those health risks, I disagree that you must be miserable if you're overweight. If someone is healthy, happy and they happen to be overweight...they should be left alone.
4) While the contestants were running a marathon, previous season winners met them at various points to run the race with them. All but one of the previous winners had put back on a considerable amount of weight. The show doesn't talk about this. Sure, they have "made an example" out of prior contestant Eric (who gained back most of his weight - and he is going to take it all off again - and then....), but I think that a good portion of ex-Biggest Losers have put back on a lot of their weight. Why? Back to #2. It is completely unrealistic to expect people to eat/workout/live the lifestyle that they live on "The Ranch." The Biggest Loser is setting people up for failure.
5) What kind of life do you have when you neglect your friends and family? When you have to leave parties early because no one understands your "stress?" When you can't go out to dinner with your family because the restaurant doesn't serve "your" foods? When you miss your kids' activities because you have to go to the gym? What kind of life is that?
6) Since when is losing 13 lbs. in a month a failure? I hate how they make it sound like such a horrible thing when a contestant loses anything less than an insane amount of weight. They are praised for losing unhealthy amounts of weight, and looked down upon for losing the "recommended" amount of weight (1 - 2 lbs./week). So when these contestants start getting closer to their "ideal" weight, and their weight loss slows down, I can only assume that they will be extremely disappointed with their average weight loss.
Done with my rant.
Sunday, May 9, 2010
Bittersweet
Today is Mother's Day. I am so blessed to be a mother. So blessed to feel Jack's arms wrapped around my neck and smell his hair. Blessed to get wet kisses and hear him say "Happy Muhver's Day." I have much to be thankful for.
When we picked Jack up from Sunday School today, there was a table full of flowers that the children had made for their moms. I asked Jack if he made a flower, and he said "no, I didn't want to." It's a small paper flower - but I was sad that I didn't get one. While other moms were praising their childrens' artwork, I was ushering Jack out of the hallway before he had a meltdown. When I asked him if he had fun at Sunday School, he said "yes, they had a school bus." I asked him if he played with other kids in the classroom and he said "no, I played by myself." Tears filled my eyes at the thought of the other children playing together, and Jack sitting by himself, playing with a school bus. I asked him what they learned, and he couldn't tell me. Another bittersweet moment.
Motherhood is not at all what I thought it would be. My journey into motherhood has been filled with many more lows than I thought it would be. You have an expectation. An idea of what things will be like. Whether it's right or not, you expect motherhood to be filled with joy and laughter. And while we have had our share of laughter, our monotonous days are filled with tantrums, screaming, meltdowns, stimming, and repetitive behavior. Motherhood has become an experience that has stretched me thinner than I thought possible. I never thought that I would be the one raising a special-needs child. Never thought that I would be the one taking my child to therapy, special education classes, and more doctor's appointments than I can keep track of. But, here we are. This is our reality. We do what we do. We make it through each day and collapse into bed each night (for a couple of hours, at least!). We are continually learning how to best nurture and support Jack.
I have many moments of despair. Moments when I cry and yell and wonder what the purpose of all of this is. Moments when I want to give up and run away. Moments where I think that it's all just too hard and I can't go on one more minute.
But then I have moments of love. Moments when Jack smiles at me and I see that adorable dimple on his right cheek. Moments when he says or does something so absolutely hilarious that he has me laughing until I cry. Moments when he has a breakthrough and tries to do something that he wouldn't do before.
Mother's Day is bittersweet for me. Not only because of the challenges of raising a special needs child, but also because of the unfulfilled desire for another child. We watched the baby dedication at church this morning, and tears fell down my cheeks. Watching the precious newborn babies squirming in their parents' arms and hearing their baby sounds fill the room. As difficult as motherhood has been for me, I still have the desire to have another baby. There is still the yearning in my heart to have a sweet new baby to be a part of our family. God knows. He knows my desires and He knows the plans for our family. I am trusting and surrendering.
So....Mother's Day. A day filled with hugs and kisses, tears and worries. I am so blessed. I married a man that loves God and loves me. A man that loves our son and is dedicated to our family. I have a son that has such unique ways of showing me that he loves me. Even if he doesn't make me a paper flower, I know that he loves me beyond words. He makes me laugh and teaches me new things every day. I am so blessed.
When we picked Jack up from Sunday School today, there was a table full of flowers that the children had made for their moms. I asked Jack if he made a flower, and he said "no, I didn't want to." It's a small paper flower - but I was sad that I didn't get one. While other moms were praising their childrens' artwork, I was ushering Jack out of the hallway before he had a meltdown. When I asked him if he had fun at Sunday School, he said "yes, they had a school bus." I asked him if he played with other kids in the classroom and he said "no, I played by myself." Tears filled my eyes at the thought of the other children playing together, and Jack sitting by himself, playing with a school bus. I asked him what they learned, and he couldn't tell me. Another bittersweet moment.
Motherhood is not at all what I thought it would be. My journey into motherhood has been filled with many more lows than I thought it would be. You have an expectation. An idea of what things will be like. Whether it's right or not, you expect motherhood to be filled with joy and laughter. And while we have had our share of laughter, our monotonous days are filled with tantrums, screaming, meltdowns, stimming, and repetitive behavior. Motherhood has become an experience that has stretched me thinner than I thought possible. I never thought that I would be the one raising a special-needs child. Never thought that I would be the one taking my child to therapy, special education classes, and more doctor's appointments than I can keep track of. But, here we are. This is our reality. We do what we do. We make it through each day and collapse into bed each night (for a couple of hours, at least!). We are continually learning how to best nurture and support Jack.
I have many moments of despair. Moments when I cry and yell and wonder what the purpose of all of this is. Moments when I want to give up and run away. Moments where I think that it's all just too hard and I can't go on one more minute.
But then I have moments of love. Moments when Jack smiles at me and I see that adorable dimple on his right cheek. Moments when he says or does something so absolutely hilarious that he has me laughing until I cry. Moments when he has a breakthrough and tries to do something that he wouldn't do before.
Mother's Day is bittersweet for me. Not only because of the challenges of raising a special needs child, but also because of the unfulfilled desire for another child. We watched the baby dedication at church this morning, and tears fell down my cheeks. Watching the precious newborn babies squirming in their parents' arms and hearing their baby sounds fill the room. As difficult as motherhood has been for me, I still have the desire to have another baby. There is still the yearning in my heart to have a sweet new baby to be a part of our family. God knows. He knows my desires and He knows the plans for our family. I am trusting and surrendering.
So....Mother's Day. A day filled with hugs and kisses, tears and worries. I am so blessed. I married a man that loves God and loves me. A man that loves our son and is dedicated to our family. I have a son that has such unique ways of showing me that he loves me. Even if he doesn't make me a paper flower, I know that he loves me beyond words. He makes me laugh and teaches me new things every day. I am so blessed.
Wednesday, May 5, 2010
Motherhood in pictures
Kristen at We Are THAT Family is having a giveaway and asking moms to show pictures the define "motherhood" for them. Here are some that mean the most to me....
For anyone that doesn't know, I had a less than desirable birth experience and had to be put under general anesthesia. Here are a couple of pictures from the recovery room as I was just waking up.
My mom. This picture speaks so much about a mother's love to me.
Awake enough to meet.
There is nothing that can prepare you for the exhaustion of the first days at home.
He rarely slept. So when he did, we wanted to take pictures.
The first time he had a really, really bad cold. My heart broke.
At a pumpkin patch, 2007.
Kisses through the bike trailer.
That smile. I can't get enough of it.
Love.Thursday, February 18, 2010
True Love
My amazing husband wrote a heart-felt post in regards to Jack...it also includes an update to his sleep study. I'm copying it here so everyone can read it. :)
I am not much of a writer, so forgive any mistakes & apologies for the length of the note. I wrote this today about Jack and what an amazing child & blessing he really is.
No, this entry is not about crazy times as in fast running. I've still been training, but have been sidelined somewhat by a nasty cold. I managed 14+ (short considering I was over 20 the weeks prior) miles last week with a chest cold that's now a nice sneeze etc. I'm at 7mi this week with my first ever Half Marathon on Sunday the 14th.
This post is more about the crazy times in our lives. I'm stepping back to write something different this time. Something that is always on my mind, and is often reflected upon on my "Long Run" days.
Our son Jack, born in July 2005 was diagnosed with Autism Spectrum Disorder by our school district back in August 2008. He received a medical diagnosis back in September 09' from Fraser in Minneapolis.
When you first hear someone say "Your Child has Autism", you really don't know what to think. You're taken back by it. Sure, we knew something with our son was "off" due to some missed milestones, slightly quirky behaviors etc, but we were not assuming anything or jumping to any conclusions. Initially, I'll admit, I was in denial. The feeling of "That's not true" was frequent.
Our Jack is a very special boy, and I love him dearly. There are plenty of moments that I get frustrated (I've struggled with anger/quick temper forever!), but in the end I will give everything for this little boy who struggles every day to communicate with us. Jack is very verbal as far as autism goes, and knows an amazing amount of words. His autism certainly doesn't effect his amount of talking. Jack is very smart, but has trouble communicating thoughts that are his own. Echolalia effects Jack. Defined as "The involuntary parrot-like repetition (echoing) of a word or phrase just spoken by another person", echolalia can make Jack appear quite normal to a lot of people that do not know him, or those that may not understand a lot about Autism. If you meet Jack, and say "Hi, how are you", he knows the correct answer to be "I'm fine" or "Good, how are you". It's a VERY Rare occasion that we'll get an answer that reflects how he is actually feeling. For all we know, he can say "I'm fine", but be reeling inside with anxiety from any number of situations. Most of Jack's responses to any question posed to him are canned, meaning that he'll think for a brief amount of time, then provide a response he's heard from either myself, his mom or someone else. If he doesn't know "the answer", he'll give you a sheepish grin, laugh, or sometimes make an odd noise, or even on occasion, he'll just say poopie.
Jack's memory, both audio and visual is astounding. Take for example, listing to a music CD. One of his favorites is "Church Music", by David Crowder Band. He has had his own little CD player that has since been destroyed by his recent destruction faze. We provided him this David Crowder CD as he really enjoys their music. Within a week of him having this CD in his CD player, he had memorized the track number of ALL 17 tracks on the CD by way of listening to the first 2-3 seconds of any song. Now, w/o ANY prompting, we can play the Church Music album on the iPhone in the car and within 3 seconds of the song starting, he'll say "That's number 10" or "That's number 6" etc. He knows every track on the CD and can give you the track number of them regardless of the ORDER they're played back.
Jack's hearing is amazing. So much so that we think he hears nearly everything going on around him, all at the same time. Imagine for a second that you're in Grand Central Terminal, NY. Thousands of people walking, talking, trains, escalators, cash registers, cell phones etc. Now, imagine hearing all of these sounds at the same time and trying to process them. This is what it's like for Jack. Trying to take all of that in, all at once and process it. It get's overwhelming and can lead to melt down city because he can't otherwise express how he feels in those situations. We're learning as parents that we need to carefully plan outings with Jack and make sure that we talk to him about where we're going, what will be going on there, if it'll be loud or not, if there will be a lot of people etc. Doing this ahead of time can make all the difference in our day. Sometimes, he'll still "lose it", but that may be because he's tired as well.
Jack is also VERY schedule driven. This is common with autism and he appears to fit right into that mold of having to know what's coming next, when, how long. It's a difficult task to plan your days as structured as Jack needs them. There's a fine line between planning every minute of his day, vs. trying to teach him that schedules can sometimes change, or things might be different and that it's OK. We're adapting, and so is Jack.
Another big area that Jack struggles with is transitioning from one thing to the next. Sure, any kid that has to stop playing with toys or stop doing something they're enjoying to do something else will not like it. With Autism, this can be magnified to an extreme in any transition no matter how big or small. Jack occasionally struggles with processing these transitions whether big or small. Sometimes it can be as simple as pulling the car into the garage and going inside. We'll pull in, open the doors, unbuckle him etc and he's simply not ready, or hasn't processed yet that it's time to come inside. We've left him in the car on several occasions and he's done well with coming in on his own after a few minutes.
We have some crazy months coming ahead of us; For about the last year to year and a half, Jack's sleep has gone really down hill. He is up and out of his room multiple times 99% of nights. Sometimes, it'll be just 2-3 times a night that he'll wake up and need us to put him back to sleep, but it can be as many as 10-12 times a night. Regardless of how many times, he is up for the day at or before 5am. We've tried consistently putting him to bed later, say after 8:30-9PM, but that doesn't change anything. He still wakes multiple times and is up and ready to go by 5am. We initially inquired about this with his pediatrician and received the "maybe he doesn't need that much sleep" speech. After a couple times of mentioning sleep issues, it was suggested that we try melatonin for him. Melatonin is an over the counter regulator of serotonin. This would help Jack fall asleep quickly, but even with doses over 3mg, he wouldn't sleep consistently, or any later than 5am. Finally after a year of asking about it, his doctor put in a referral for a "sleep study" at MayoClinic in Rochester, MN.
This sleep study just occurred overnight on 2.9.2k10. Getting any child hooked up to more than 30 EEG sensors would be difficult, but factor in Autism and it's that much tougher. The AMAZING part of getting hooked up was that Jack was a TROOPER. His anxiety was obviously elevated, but he did a great job of letting them put sensors/glue/tape all over his head, legs, face, chin etc. He's one tough dude! I probably would've pitched a bigger fit than he did. Only one of us was allowed to stay overnight with him, and Stephanie decided she would do it. She is so amazing with Jack. Patience, compassion, kindness...you name it, she's all over it.
The morning after his sleep study was the follow up with the sleep doctor(s). This was probably the hardest morning we've had..even more so than hearing "Your son has Autism". We met with the doctors and in the beginning it was seeming like everything was good. Jack's oxygen while sleeping was good, heart rate was great, sleep/wake cycles are fine. The answer we got about why he might not sleep that well wasn't what we were expecting. They believe it may be due in large part to an attachment issue & Jack being so anxious all the time. Jack has ALWAYS slept in his own crib, bed etc, but they think that due to his anxiety levels, he may hit a "wake cycle" and get worried that we're not here or something, so then he has to come downstairs, realize that we're there, get put back to bed, and go back to sleep for a another couple hours or so. Repeat this process until 5am and then it's time to get up for the day.
It's what came after that explanation that totally threw us off. The doctor explained that Jack has an exceptional amount of brain "misfires" while he is sleeping. This occurs on the left side of his brain and was very frequent while sleeping. Then, it hurt more..the word seizure came out of the doctors mouth. She said the type of activity he's having in his brain while sleeping is prone/related to seizures. She advised that while he didn't have a seizure during the sleep study, it's likely that he's had several seizures of a non-clinical variety..meaning that we may never see them happening, and that he isn't convulsing etc, but that there is something going on that needs addressed. Immediately, it clicked with me that we've probably witnessed our son having a seizure on several occasions. Jack has these periods of 30 seconds to 1 minute where no matter what we do, we can't get his attention. He'll just sort of sit there, starting off into space and nothing seems to rouse him from that. Then, all of a sudden we'll get his attention and he's back to his usual self. Seizure? Who knows...but we're determined to find out!
It was with that, we learned that within the next month, he'll be having an MRI of his brain focusing on seizure something or other, and for that he would need to be put to sleep because it can take about an hour for a child to go through the process, and he would NEVER lay that STILL for THAT LONG. He also has to have another EEG, but this time it'll be while he's awake, not sleeping. Hopefully he does just as well this time with getting all the sensors hooked up. Once those appointments are done, we'll meet with a neurologist to review results and go from there.
In the meantime, we moved Jack's bedroom back downstairs next to our room, and will be on our toes even more now watching for any signs that something is wrong.
All of these struggles and trials aside, he is one amazing child, and is truly a gift to us. Through his Preschool, speech and occupational therapy, we're learning a lot about who he is. We're learning to work with him, and help him communicate his needs and true feelings to us. It's a long road, but we wouldn't trade it for anything.
I am not much of a writer, so forgive any mistakes & apologies for the length of the note. I wrote this today about Jack and what an amazing child & blessing he really is.
No, this entry is not about crazy times as in fast running. I've still been training, but have been sidelined somewhat by a nasty cold. I managed 14+ (short considering I was over 20 the weeks prior) miles last week with a chest cold that's now a nice sneeze etc. I'm at 7mi this week with my first ever Half Marathon on Sunday the 14th.
This post is more about the crazy times in our lives. I'm stepping back to write something different this time. Something that is always on my mind, and is often reflected upon on my "Long Run" days.
Our son Jack, born in July 2005 was diagnosed with Autism Spectrum Disorder by our school district back in August 2008. He received a medical diagnosis back in September 09' from Fraser in Minneapolis.
When you first hear someone say "Your Child has Autism", you really don't know what to think. You're taken back by it. Sure, we knew something with our son was "off" due to some missed milestones, slightly quirky behaviors etc, but we were not assuming anything or jumping to any conclusions. Initially, I'll admit, I was in denial. The feeling of "That's not true" was frequent.
Our Jack is a very special boy, and I love him dearly. There are plenty of moments that I get frustrated (I've struggled with anger/quick temper forever!), but in the end I will give everything for this little boy who struggles every day to communicate with us. Jack is very verbal as far as autism goes, and knows an amazing amount of words. His autism certainly doesn't effect his amount of talking. Jack is very smart, but has trouble communicating thoughts that are his own. Echolalia effects Jack. Defined as "The involuntary parrot-like repetition (echoing) of a word or phrase just spoken by another person", echolalia can make Jack appear quite normal to a lot of people that do not know him, or those that may not understand a lot about Autism. If you meet Jack, and say "Hi, how are you", he knows the correct answer to be "I'm fine" or "Good, how are you". It's a VERY Rare occasion that we'll get an answer that reflects how he is actually feeling. For all we know, he can say "I'm fine", but be reeling inside with anxiety from any number of situations. Most of Jack's responses to any question posed to him are canned, meaning that he'll think for a brief amount of time, then provide a response he's heard from either myself, his mom or someone else. If he doesn't know "the answer", he'll give you a sheepish grin, laugh, or sometimes make an odd noise, or even on occasion, he'll just say poopie.
Jack's memory, both audio and visual is astounding. Take for example, listing to a music CD. One of his favorites is "Church Music", by David Crowder Band. He has had his own little CD player that has since been destroyed by his recent destruction faze. We provided him this David Crowder CD as he really enjoys their music. Within a week of him having this CD in his CD player, he had memorized the track number of ALL 17 tracks on the CD by way of listening to the first 2-3 seconds of any song. Now, w/o ANY prompting, we can play the Church Music album on the iPhone in the car and within 3 seconds of the song starting, he'll say "That's number 10" or "That's number 6" etc. He knows every track on the CD and can give you the track number of them regardless of the ORDER they're played back.
Jack's hearing is amazing. So much so that we think he hears nearly everything going on around him, all at the same time. Imagine for a second that you're in Grand Central Terminal, NY. Thousands of people walking, talking, trains, escalators, cash registers, cell phones etc. Now, imagine hearing all of these sounds at the same time and trying to process them. This is what it's like for Jack. Trying to take all of that in, all at once and process it. It get's overwhelming and can lead to melt down city because he can't otherwise express how he feels in those situations. We're learning as parents that we need to carefully plan outings with Jack and make sure that we talk to him about where we're going, what will be going on there, if it'll be loud or not, if there will be a lot of people etc. Doing this ahead of time can make all the difference in our day. Sometimes, he'll still "lose it", but that may be because he's tired as well.
Jack is also VERY schedule driven. This is common with autism and he appears to fit right into that mold of having to know what's coming next, when, how long. It's a difficult task to plan your days as structured as Jack needs them. There's a fine line between planning every minute of his day, vs. trying to teach him that schedules can sometimes change, or things might be different and that it's OK. We're adapting, and so is Jack.
Another big area that Jack struggles with is transitioning from one thing to the next. Sure, any kid that has to stop playing with toys or stop doing something they're enjoying to do something else will not like it. With Autism, this can be magnified to an extreme in any transition no matter how big or small. Jack occasionally struggles with processing these transitions whether big or small. Sometimes it can be as simple as pulling the car into the garage and going inside. We'll pull in, open the doors, unbuckle him etc and he's simply not ready, or hasn't processed yet that it's time to come inside. We've left him in the car on several occasions and he's done well with coming in on his own after a few minutes.
We have some crazy months coming ahead of us; For about the last year to year and a half, Jack's sleep has gone really down hill. He is up and out of his room multiple times 99% of nights. Sometimes, it'll be just 2-3 times a night that he'll wake up and need us to put him back to sleep, but it can be as many as 10-12 times a night. Regardless of how many times, he is up for the day at or before 5am. We've tried consistently putting him to bed later, say after 8:30-9PM, but that doesn't change anything. He still wakes multiple times and is up and ready to go by 5am. We initially inquired about this with his pediatrician and received the "maybe he doesn't need that much sleep" speech. After a couple times of mentioning sleep issues, it was suggested that we try melatonin for him. Melatonin is an over the counter regulator of serotonin. This would help Jack fall asleep quickly, but even with doses over 3mg, he wouldn't sleep consistently, or any later than 5am. Finally after a year of asking about it, his doctor put in a referral for a "sleep study" at MayoClinic in Rochester, MN.
This sleep study just occurred overnight on 2.9.2k10. Getting any child hooked up to more than 30 EEG sensors would be difficult, but factor in Autism and it's that much tougher. The AMAZING part of getting hooked up was that Jack was a TROOPER. His anxiety was obviously elevated, but he did a great job of letting them put sensors/glue/tape all over his head, legs, face, chin etc. He's one tough dude! I probably would've pitched a bigger fit than he did. Only one of us was allowed to stay overnight with him, and Stephanie decided she would do it. She is so amazing with Jack. Patience, compassion, kindness...you name it, she's all over it.
The morning after his sleep study was the follow up with the sleep doctor(s). This was probably the hardest morning we've had..even more so than hearing "Your son has Autism". We met with the doctors and in the beginning it was seeming like everything was good. Jack's oxygen while sleeping was good, heart rate was great, sleep/wake cycles are fine. The answer we got about why he might not sleep that well wasn't what we were expecting. They believe it may be due in large part to an attachment issue & Jack being so anxious all the time. Jack has ALWAYS slept in his own crib, bed etc, but they think that due to his anxiety levels, he may hit a "wake cycle" and get worried that we're not here or something, so then he has to come downstairs, realize that we're there, get put back to bed, and go back to sleep for a another couple hours or so. Repeat this process until 5am and then it's time to get up for the day.
It's what came after that explanation that totally threw us off. The doctor explained that Jack has an exceptional amount of brain "misfires" while he is sleeping. This occurs on the left side of his brain and was very frequent while sleeping. Then, it hurt more..the word seizure came out of the doctors mouth. She said the type of activity he's having in his brain while sleeping is prone/related to seizures. She advised that while he didn't have a seizure during the sleep study, it's likely that he's had several seizures of a non-clinical variety..meaning that we may never see them happening, and that he isn't convulsing etc, but that there is something going on that needs addressed. Immediately, it clicked with me that we've probably witnessed our son having a seizure on several occasions. Jack has these periods of 30 seconds to 1 minute where no matter what we do, we can't get his attention. He'll just sort of sit there, starting off into space and nothing seems to rouse him from that. Then, all of a sudden we'll get his attention and he's back to his usual self. Seizure? Who knows...but we're determined to find out!
It was with that, we learned that within the next month, he'll be having an MRI of his brain focusing on seizure something or other, and for that he would need to be put to sleep because it can take about an hour for a child to go through the process, and he would NEVER lay that STILL for THAT LONG. He also has to have another EEG, but this time it'll be while he's awake, not sleeping. Hopefully he does just as well this time with getting all the sensors hooked up. Once those appointments are done, we'll meet with a neurologist to review results and go from there.
In the meantime, we moved Jack's bedroom back downstairs next to our room, and will be on our toes even more now watching for any signs that something is wrong.
All of these struggles and trials aside, he is one amazing child, and is truly a gift to us. Through his Preschool, speech and occupational therapy, we're learning a lot about who he is. We're learning to work with him, and help him communicate his needs and true feelings to us. It's a long road, but we wouldn't trade it for anything.
Wednesday, January 27, 2010
Eye Update
Yesterday Jack had an appointment with a new ophthalmologist for a surgery consultation. The doctor agreed that he is a good candidate for eye muscle surgery. Now all we have to do is call the surgery scheduler and arrange a date for Jack to have the surgery. He said that they usually schedule a few weeks out. The ophthalmologists office is located right next to a Children's Hospital, so that is where they will be doing the surgery. He said the procedure takes about 40 minutes and recovery is fairly easy. He was very good about explaining the procedure to me - they even got someone to take Jack out of the room and play with him so I could have an uninterrupted conversation with the doctor. That was really nice!
He will still need glasses after surgery, but there is a good possibility that he won't need bifocals anymore. There is also the possibility that we will still need to do some type of patching after surgery if his vision isn't good enough. For some reason yesterday, he didn't do well on the vision test (reading the letters) for his left eye (the "bad" eye). I've seen him do better - so I don't know what was going on yesterday. So hopefully his vision is good enough that he won't need patching after surgery. However, he does need patching done starting now until surgery - at least 2 hours a day. That isn't too bad. His old fleece patch (seen here ) doesn't fit his glasses anymore, so we'll have to use the adhesive ones for a few weeks. Ick.
I will update when we know more about the surgery date - and of course I'll update after surgery!
He will still need glasses after surgery, but there is a good possibility that he won't need bifocals anymore. There is also the possibility that we will still need to do some type of patching after surgery if his vision isn't good enough. For some reason yesterday, he didn't do well on the vision test (reading the letters) for his left eye (the "bad" eye). I've seen him do better - so I don't know what was going on yesterday. So hopefully his vision is good enough that he won't need patching after surgery. However, he does need patching done starting now until surgery - at least 2 hours a day. That isn't too bad. His old fleece patch (seen here ) doesn't fit his glasses anymore, so we'll have to use the adhesive ones for a few weeks. Ick.
I will update when we know more about the surgery date - and of course I'll update after surgery!
Sunday, January 24, 2010
This Wasn't In The Parenting Books...
I almost don't know how to say this.
Every time I write something down, it just doesn't sound right.
It sounds a little bit crazy.
Far-fetched, if you will.
Like, I never-in-a-million-years thought I would be saying something like this.
So, I will just say it.
Are you ready?
My son ate a light bulb.
No kidding. The kid BIT, CHEWED, and SWALLOWED the glass part of a nightlight light bulb. Want the whole story? If so, keep reading.
Jack has "quiet time" every day after lunch. This has replaced nap time. He usually stays up there for an hour or so. It gives us both some down-time and is a nice break in the day. (Who am I kidding...it's mostly for me.) So, yesterday, he was having quiet time in his room and Lonnie and I were downstairs watching TV. We heard Jack coming downstairs and figured he was just coming out to whine about some toy being broken or not wanting to stay up in his room. The first thing out of his mouth when he looks at me was, "That was icky." And he spit. Confused (because there isn't anything edible in his room), I asked him, "What was icky?" His reply?
"The NIGHTLIGHT."
Hmmmm? Come again? The nightlight was icky? Not exactly something you want to hear from a 4 year old boy.
I bolted upstairs to find his nightlight, in the outlet, with the bulb broken. The entire glass part of the bulb was broken off of the metal part of the bulb. When I saw this, I may or may not have muttered some very inappropriate words in front of my 4 year old. I quickly scanned the area and picked up the shards of glass that I saw on the floor, unplugged the nightlight and ran downstairs. I told Lonnie "We're going to the hospital."
Before we left for the hospital, we sat down with Jack for a second and asked him what exactly happened with the nightlight. His responses -
"I put it in my mouth."
"It tasted icky."
"I chewed it, like this."
"I swallowed it, like this."
We asked him 20 times if he swallowed it, and his response was consistently YES. So, off we went to the ER.
We walked up to the ER desk and they asked why we were there. "Um, well, my son, you see, he, um, bit and chewed and swallowed the glass part of a light bulb." I'm sure my face was bright red. It's a bit embarrassing to admit that your child has just swallowed glass when you weren't watching him. Both of the receptionists gasped. You know that's not a good sign.
We got back to triage and got a room really quickly (the ER happened to be very slow - something I was praying for while we were driving there!) and saw the doctor. They took x-rays of Jack's neck, chest, and stomach. And the results were - nothing. They didn't see anything. Which is great. They probably wouldn't be able to see just glass anyway, but the doctor wanted to make sure that there wasn't anything else stuck in there (since obviously our kid has a thing for putting stuff in his mouth). The doctor thoroughly checked his mouth and gums and teeth and didn't see any cuts or blood or glass. Now, we just watch him and make sure blood doesn't start coming out of places it's not supposed to, or that he doesn't get a fever or start throwing up.
When we came home, I looked more thoroughly in Jack's room for glass pieces and I found quite a few more little tiny pieces on his carpet. One of them had blood on it. Good grief.
Apparently it's time for us to provide Jack with more APPROPRIATE things to stick in his mouth. We know he has a lot of sensory input needs for his mouth, we just never thought he would resort to a light bulb.
So...needless to say...Jack no longer has a nightlight. All of his outlets have plugs in them. He had several conversations with us and the doctor about only putting food in his mouth.
Yesterday was exhausting! Here's a picture of the infamous nightlight. Sorry it's fuzzy, it was taken with Lonnie's phone and we were heading out the door to the hospital.
Every time I write something down, it just doesn't sound right.
It sounds a little bit crazy.
Far-fetched, if you will.
Like, I never-in-a-million-years thought I would be saying something like this.
So, I will just say it.
Are you ready?
My son ate a light bulb.
No kidding. The kid BIT, CHEWED, and SWALLOWED the glass part of a nightlight light bulb. Want the whole story? If so, keep reading.
Jack has "quiet time" every day after lunch. This has replaced nap time. He usually stays up there for an hour or so. It gives us both some down-time and is a nice break in the day. (Who am I kidding...it's mostly for me.) So, yesterday, he was having quiet time in his room and Lonnie and I were downstairs watching TV. We heard Jack coming downstairs and figured he was just coming out to whine about some toy being broken or not wanting to stay up in his room. The first thing out of his mouth when he looks at me was, "That was icky." And he spit. Confused (because there isn't anything edible in his room), I asked him, "What was icky?" His reply?
"The NIGHTLIGHT."
Hmmmm? Come again? The nightlight was icky? Not exactly something you want to hear from a 4 year old boy.
I bolted upstairs to find his nightlight, in the outlet, with the bulb broken. The entire glass part of the bulb was broken off of the metal part of the bulb. When I saw this, I may or may not have muttered some very inappropriate words in front of my 4 year old. I quickly scanned the area and picked up the shards of glass that I saw on the floor, unplugged the nightlight and ran downstairs. I told Lonnie "We're going to the hospital."
Before we left for the hospital, we sat down with Jack for a second and asked him what exactly happened with the nightlight. His responses -
"I put it in my mouth."
"It tasted icky."
"I chewed it, like this."
"I swallowed it, like this."
We asked him 20 times if he swallowed it, and his response was consistently YES. So, off we went to the ER.
We walked up to the ER desk and they asked why we were there. "Um, well, my son, you see, he, um, bit and chewed and swallowed the glass part of a light bulb." I'm sure my face was bright red. It's a bit embarrassing to admit that your child has just swallowed glass when you weren't watching him. Both of the receptionists gasped. You know that's not a good sign.
We got back to triage and got a room really quickly (the ER happened to be very slow - something I was praying for while we were driving there!) and saw the doctor. They took x-rays of Jack's neck, chest, and stomach. And the results were - nothing. They didn't see anything. Which is great. They probably wouldn't be able to see just glass anyway, but the doctor wanted to make sure that there wasn't anything else stuck in there (since obviously our kid has a thing for putting stuff in his mouth). The doctor thoroughly checked his mouth and gums and teeth and didn't see any cuts or blood or glass. Now, we just watch him and make sure blood doesn't start coming out of places it's not supposed to, or that he doesn't get a fever or start throwing up.
When we came home, I looked more thoroughly in Jack's room for glass pieces and I found quite a few more little tiny pieces on his carpet. One of them had blood on it. Good grief.
Apparently it's time for us to provide Jack with more APPROPRIATE things to stick in his mouth. We know he has a lot of sensory input needs for his mouth, we just never thought he would resort to a light bulb.
So...needless to say...Jack no longer has a nightlight. All of his outlets have plugs in them. He had several conversations with us and the doctor about only putting food in his mouth.
Yesterday was exhausting! Here's a picture of the infamous nightlight. Sorry it's fuzzy, it was taken with Lonnie's phone and we were heading out the door to the hospital.
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