Ever since I was a young child, I have always had the ability to pick out a four leaf clover. Most of the time, it was when I wasn't even looking for one. I never understood (and still don't) why people have a hard time finding them. To me, they looked so different among their three leaf brothers and sisters. To me, they just stand out.
This, to me, was pretty cool enough in itself. What is even cooler, is that my four year old daughter apparently has the same ability. Kicking around the soccer ball, she comes running up to me, "Mom, I've found a four leaf clover!" The first time I figured she was confused, but upon observation of her clover, she had indeed found one. What confirmed it even more, was when she found the next one with the same amount of ease!
Admittedly, having the ability to find four leaf clovers isn't going to get you far in life, but understanding the reasons behind it are fascinating.
Caitlin had her checkup with her developmental pediatrician today. I told him about her new-found ability. I told him also that I had this ability as well. I figured he would think that I was weird for mentioning such a thing as a 'talent', but he went on to say about how it relates to pattern recognition.
So far, with Caitlin's Asperger's, there have been more 'gifts' than struggles. Her struggles socially are that she would rather be alone and that she doesn't understand social interactions, but it is something that we are working on. Transitions and rigidity are big too, but we are working around them. She is such a talented girl. I look forward to watching her grow and discovering her many talents.
Wednesday, October 19, 2011
Friday, September 30, 2011
Eosinophilic Esophagitis
So, just when you think you have everything all under control...the right medications, the right schedule, the perfect balance...life throws you another curve ball. So, this is our current curve ball...
My views on Asperger's with my son have always been that there wasn't a food related component. Knowing that so many in the Autism community struggle with this and special diets, I felt relieved to have something that I didn't have to deal with. Monitoring your own diet can be stressful enough...I can only begin to imagine what managing your child's diet is like when you aren't with them all of the time. Making sure that school, family and friends comply and that your child doesn't sneak something forbidden when you aren't watching.
My son, who is nine, consistently regurgitates food all day long. This doesn't bother him at all. It bothers me. It smells horrid. He chews it when it comes up. I can only imagine what his friends at school think about it. It has been noticed at school as well.
I didn't think anything major was going on. My concerns were that it was GERD and the amount of acid that was being brought up into his esophagus. I was worried about the damage it would cause in the long term.
The pediatrician wrote a prescription for Nexium to reduce the acid. This didn't stop the regurgitation though. She referred us to a pediatric gastroenterologist for further evaluation. After the initial meeting, her thoughts were that it was most likely rumination and not GERD. Great! Something I hadn't heard of yet. Something that I 'googled' as soon as I got home. Rumination is a behavioral thing. It is very hard to break, and you work with a behaviorist that is familiar with rumination. Lucky (sarcasm) for us, both of his therapists aren't familiar with how to treat rumination and the closest behaviorist is forty-five minutes away and has a long waiting list. Great. At this point I didn't know whether it would be better to deal with GERD or rumination.
To confirm the diagnosis, he underwent an upper endoscopy. During this procedure they took biopsies of his esophagus. He thought it was cool because he got to see images of the inside of his esophagus, stomach and his pyloric sphincter. I wasn't prepared for what we were told that day after the endoscopy. It was rumination and GERD. I left there feeling like I was in a fog. I wasn't expecting that.
To add to it, a week later I got the results from the biopsies. Another vocabulary word to add to the list. I can't spell this one off the top of my head yet...lol. The biopsies showed that he has eosinophilic esophagitis. Say what??? I had the doctor repeat it a couple of times, figuring I could figure out how to spell it. I had to have her spell it out for me. Great. Something else to 'google' after we got off the phone.
Apparently, from what the doctor told me, this means that he is having an allergic reaction to something. It is commonly a food protein, but it could be environmental. Not sure which one is the 'better' option. I know for sure that it isn't celiac's disease (gluten) as they did test for that already. So, he was prescribed medication for this. Medication that confused our pharmacist. I won't go into the details, but it involves swallowing liquid that is supposed to be used in a nebulizer and adding splenda to it. He was also referred to the allergy clinic so we can determine what the allergen is.
So, now we wait for that appointment...I feel helpless because I feel like I am harming him with something he is allergic to that I can't eliminate because I don't know what it is yet. I hope it isn't dairy because he loves his milk. Being allergic to the milk protein is not the same as being lactose intolerant either. I feel so bad, he is only nine. But, we will find a way to make it through and wait for the next curve ball that life throws our way.
My views on Asperger's with my son have always been that there wasn't a food related component. Knowing that so many in the Autism community struggle with this and special diets, I felt relieved to have something that I didn't have to deal with. Monitoring your own diet can be stressful enough...I can only begin to imagine what managing your child's diet is like when you aren't with them all of the time. Making sure that school, family and friends comply and that your child doesn't sneak something forbidden when you aren't watching.
My son, who is nine, consistently regurgitates food all day long. This doesn't bother him at all. It bothers me. It smells horrid. He chews it when it comes up. I can only imagine what his friends at school think about it. It has been noticed at school as well.
I didn't think anything major was going on. My concerns were that it was GERD and the amount of acid that was being brought up into his esophagus. I was worried about the damage it would cause in the long term.
The pediatrician wrote a prescription for Nexium to reduce the acid. This didn't stop the regurgitation though. She referred us to a pediatric gastroenterologist for further evaluation. After the initial meeting, her thoughts were that it was most likely rumination and not GERD. Great! Something I hadn't heard of yet. Something that I 'googled' as soon as I got home. Rumination is a behavioral thing. It is very hard to break, and you work with a behaviorist that is familiar with rumination. Lucky (sarcasm) for us, both of his therapists aren't familiar with how to treat rumination and the closest behaviorist is forty-five minutes away and has a long waiting list. Great. At this point I didn't know whether it would be better to deal with GERD or rumination.
To confirm the diagnosis, he underwent an upper endoscopy. During this procedure they took biopsies of his esophagus. He thought it was cool because he got to see images of the inside of his esophagus, stomach and his pyloric sphincter. I wasn't prepared for what we were told that day after the endoscopy. It was rumination and GERD. I left there feeling like I was in a fog. I wasn't expecting that.
To add to it, a week later I got the results from the biopsies. Another vocabulary word to add to the list. I can't spell this one off the top of my head yet...lol. The biopsies showed that he has eosinophilic esophagitis. Say what??? I had the doctor repeat it a couple of times, figuring I could figure out how to spell it. I had to have her spell it out for me. Great. Something else to 'google' after we got off the phone.
Apparently, from what the doctor told me, this means that he is having an allergic reaction to something. It is commonly a food protein, but it could be environmental. Not sure which one is the 'better' option. I know for sure that it isn't celiac's disease (gluten) as they did test for that already. So, he was prescribed medication for this. Medication that confused our pharmacist. I won't go into the details, but it involves swallowing liquid that is supposed to be used in a nebulizer and adding splenda to it. He was also referred to the allergy clinic so we can determine what the allergen is.
So, now we wait for that appointment...I feel helpless because I feel like I am harming him with something he is allergic to that I can't eliminate because I don't know what it is yet. I hope it isn't dairy because he loves his milk. Being allergic to the milk protein is not the same as being lactose intolerant either. I feel so bad, he is only nine. But, we will find a way to make it through and wait for the next curve ball that life throws our way.
Wednesday, September 7, 2011
My Overactive Sniffer
I have always had a keen sense of smell. Usually, this isn't a positive thing as many smells bother me. A few times, though, it has come in handy. I'd like to take you back to a moment from my childhood when my overactive sniffer was a blessing.
Growing up, I was basically the only kid in my extended family as all of the others lived far away. It was me and a half dozen adults, give or take. In many ways this was a positive thing. This also was a negative thing. I was just a 'kid' and hadn't been around long enough to know more than anyone else around me.
One day, at my aunt's house, I could smell something burning. It smelled like a wood stove, only there wasn't a wood stove. I went and told the adults, but since I was no more than ten and no one else could smell anything, my concerns were dismissed. After a few more minutes of smelling what was definitively wood smoke, I went to tell them again. I didn't let them dismiss my concerns this time.
They still couldn't smell what I could smell. I led them to where I could smell it the strongest. This was the room we call the 'Den'. They couldn't smell it there either. Boy was I getting aggravated.
Someone, I don't remember who, finally found the source. Outside the door of the den, which leads to the outside, the outside light had fallen over and was burning a hole into the wood on the house. Luckily, there wasn't any major damage, but I attribute that to early detection. All that needed to be replaced was the light and the wood that had been burning. If it wasn't for my nose, it could have been a lot worse. I am also thankful that my concerns were listened to.
Now, only if my nose could always be a good thing. There are many smells that I can not tolerate. Flowery fragrances are horrible. It may seem strange, but the smell of skunk doesn't bother me. The smell of microwave popcorn...can't tolerate that one either. I wish I knew why my nose likes certain smells and detests others. I also wish I knew what the average sniffer was like.
Growing up, I was basically the only kid in my extended family as all of the others lived far away. It was me and a half dozen adults, give or take. In many ways this was a positive thing. This also was a negative thing. I was just a 'kid' and hadn't been around long enough to know more than anyone else around me.
One day, at my aunt's house, I could smell something burning. It smelled like a wood stove, only there wasn't a wood stove. I went and told the adults, but since I was no more than ten and no one else could smell anything, my concerns were dismissed. After a few more minutes of smelling what was definitively wood smoke, I went to tell them again. I didn't let them dismiss my concerns this time.
They still couldn't smell what I could smell. I led them to where I could smell it the strongest. This was the room we call the 'Den'. They couldn't smell it there either. Boy was I getting aggravated.
Someone, I don't remember who, finally found the source. Outside the door of the den, which leads to the outside, the outside light had fallen over and was burning a hole into the wood on the house. Luckily, there wasn't any major damage, but I attribute that to early detection. All that needed to be replaced was the light and the wood that had been burning. If it wasn't for my nose, it could have been a lot worse. I am also thankful that my concerns were listened to.
Now, only if my nose could always be a good thing. There are many smells that I can not tolerate. Flowery fragrances are horrible. It may seem strange, but the smell of skunk doesn't bother me. The smell of microwave popcorn...can't tolerate that one either. I wish I knew why my nose likes certain smells and detests others. I also wish I knew what the average sniffer was like.
Wednesday, August 3, 2011
An Aspergian Vacation
First of all, I would like to apologize for not writing recently. Sorry, we have been really busy. I have about a thousand different things that I can't wait to write about, but finding the time is hard. I am hoping that when school starts back up I will have some more time.
What I really want to talk about is the AMAZING vacation that we went on. My parents took us on vacation to Florida. There were eight of us. We drove my eight passenger Sienna there. Keep in mind that we live in New Hampshire and Florida is approximately a twenty-four hour drive. Also keep in mind that out of the eight passengers, three are confirmed Aspies and there is one that is definitely Aspie although it isn't officially written on paper by a qualified person.
I worried sick the weeks before our vacation. What should have been a very exciting time was filled with excitement, anxiety, nervousness...dread. I wondered if it was going to be a waste of my parents' money going because all I could see was disaster. I am happy to report that it was the best time in the world and I only wish that we could have just a great time at home! We were able to spend two great days at Epcot, one great day at Magic Kingdom, one great day at Animal Kingdom and another great day at Universal's Islands of Adventure. We saved one day for staying in and relaxing.
So, how did we manage such a great trip? Two simple things. Planning and patience. I called ahead to Disney and Universal about the special needs passes. We used them while we were down there. If it wasn't for these I don't think we would have been able to manage. I also purchased some pins for us to wear. I thought about shirts, but they are more expensive and they would need washing unlike pins. Also, Kyle tends to wear more of his food than he eats and I didn't want him to have to worry too much about staying clean and avoiding stains. He wore two pins (because he loved them both and couldn't choose) and I wore a pin. My pin read, "My child has Asperger's Syndrome, your patience and understanding are appreciated." His read, "I AM someone with Autism" and the other one was about that he wasn't trying to behave badly. I underestimated how valuable these pins would be. I felt at ease out in public. I didn't feel like I had to go around and explain, or wonder if people were judging and what they were thinking. It even sparked a few great conversations with people. The few times we waited in lines and he started talking to the people in front and in back of us (and crossing social boundaries that would otherwise not be understood) people were accepting. He is a very touchy-feely kid and not once was he 'pushed' away. I think he hugged every ride operator they employ there. Everyone really loved him.
Caitlin also had a pin. Hers read "Autistic Princess" and she loved it because it was pink. We also invested in a pair of sunglasses from Disney, ones that she picked out, that she could hide behind. Remember that Adam Sandler movie where the little boy wears sunglasses and no one can see him?? This came about at the rock climbing wall. Kyle and Caitlin, brother and sister, both have Asperger's but it affects them in completely different ways. Kyle is very outgoing and too in-your-face, whereas Caitlin doesn't like people and screams and kicks if you force her to.
Kyle and Christopher were going up the rock wall and having a blast. Caitlin wanted to so bad, but she didn't want anything to do with the guy operating the attraction. I felt so bad because I knew she would have fun. I was determined to get her to climb. I finally got her to decide to go and race her brothers. That was fine until she remembered that she still had to see that 'guy'. My parents felt bad that I was trying to force her into something that she didn't want to do. I told them I wanted to try. I knew that she wanted to and she needed some coaxing, and that I wasn't being mean. Someone suggested (I think it was my mother??) about the sunglasses, we had tried it before and it had worked. She didn't have sunglasses with her, so she got to use her daddy's sunglasses. We told her that nobody could see her. It worked!! She went up that rock wall so many times!! She even took the sunglasses off midway through! Right after they were done with the rock climbing wall, we headed to the first store we saw and she picked out her own magical sunglasses.
Those sunglasses worked wonders the rest of the vacation. Many rides have height restrictions. She refused to be measured. Kicking and screaming. There was no holding her. There was no standing next to her. After the sunglasses, she didn't mind being measured. The good thing about the glasses was that she was able to self regulate. She could have her glasses and put them on when she wanted to. It worked really well.
So, my Asperger's on the trip...well, my only issue (that was noticeable to me anyway) was my sense of smell. I can not tolerate certain smells. They make me nauseated and give me headaches. The ride down and back would have been more pleasant if I didn't have a sense of smell. Fifty hours smelling a fragrance that you just can't tolerate when your sniffer is extra sensitive, doesn't make for a pleasant journey.
For my dad and his Asperger's on the journey...well...he doesn't 'officially' have Asperger's, so I guess I can't really say that anything was...but I can still pick on him! LOL! (Hi, Dad!)
I have many more Asperger stories to share about this vacation, but it is almost two in the morning and I am heading to bed for now. <3
What I really want to talk about is the AMAZING vacation that we went on. My parents took us on vacation to Florida. There were eight of us. We drove my eight passenger Sienna there. Keep in mind that we live in New Hampshire and Florida is approximately a twenty-four hour drive. Also keep in mind that out of the eight passengers, three are confirmed Aspies and there is one that is definitely Aspie although it isn't officially written on paper by a qualified person.
I worried sick the weeks before our vacation. What should have been a very exciting time was filled with excitement, anxiety, nervousness...dread. I wondered if it was going to be a waste of my parents' money going because all I could see was disaster. I am happy to report that it was the best time in the world and I only wish that we could have just a great time at home! We were able to spend two great days at Epcot, one great day at Magic Kingdom, one great day at Animal Kingdom and another great day at Universal's Islands of Adventure. We saved one day for staying in and relaxing.
So, how did we manage such a great trip? Two simple things. Planning and patience. I called ahead to Disney and Universal about the special needs passes. We used them while we were down there. If it wasn't for these I don't think we would have been able to manage. I also purchased some pins for us to wear. I thought about shirts, but they are more expensive and they would need washing unlike pins. Also, Kyle tends to wear more of his food than he eats and I didn't want him to have to worry too much about staying clean and avoiding stains. He wore two pins (because he loved them both and couldn't choose) and I wore a pin. My pin read, "My child has Asperger's Syndrome, your patience and understanding are appreciated." His read, "I AM someone with Autism" and the other one was about that he wasn't trying to behave badly. I underestimated how valuable these pins would be. I felt at ease out in public. I didn't feel like I had to go around and explain, or wonder if people were judging and what they were thinking. It even sparked a few great conversations with people. The few times we waited in lines and he started talking to the people in front and in back of us (and crossing social boundaries that would otherwise not be understood) people were accepting. He is a very touchy-feely kid and not once was he 'pushed' away. I think he hugged every ride operator they employ there. Everyone really loved him.
Caitlin also had a pin. Hers read "Autistic Princess" and she loved it because it was pink. We also invested in a pair of sunglasses from Disney, ones that she picked out, that she could hide behind. Remember that Adam Sandler movie where the little boy wears sunglasses and no one can see him?? This came about at the rock climbing wall. Kyle and Caitlin, brother and sister, both have Asperger's but it affects them in completely different ways. Kyle is very outgoing and too in-your-face, whereas Caitlin doesn't like people and screams and kicks if you force her to.
Kyle and Christopher were going up the rock wall and having a blast. Caitlin wanted to so bad, but she didn't want anything to do with the guy operating the attraction. I felt so bad because I knew she would have fun. I was determined to get her to climb. I finally got her to decide to go and race her brothers. That was fine until she remembered that she still had to see that 'guy'. My parents felt bad that I was trying to force her into something that she didn't want to do. I told them I wanted to try. I knew that she wanted to and she needed some coaxing, and that I wasn't being mean. Someone suggested (I think it was my mother??) about the sunglasses, we had tried it before and it had worked. She didn't have sunglasses with her, so she got to use her daddy's sunglasses. We told her that nobody could see her. It worked!! She went up that rock wall so many times!! She even took the sunglasses off midway through! Right after they were done with the rock climbing wall, we headed to the first store we saw and she picked out her own magical sunglasses.
Those sunglasses worked wonders the rest of the vacation. Many rides have height restrictions. She refused to be measured. Kicking and screaming. There was no holding her. There was no standing next to her. After the sunglasses, she didn't mind being measured. The good thing about the glasses was that she was able to self regulate. She could have her glasses and put them on when she wanted to. It worked really well.
So, my Asperger's on the trip...well, my only issue (that was noticeable to me anyway) was my sense of smell. I can not tolerate certain smells. They make me nauseated and give me headaches. The ride down and back would have been more pleasant if I didn't have a sense of smell. Fifty hours smelling a fragrance that you just can't tolerate when your sniffer is extra sensitive, doesn't make for a pleasant journey.
For my dad and his Asperger's on the journey...well...he doesn't 'officially' have Asperger's, so I guess I can't really say that anything was...but I can still pick on him! LOL! (Hi, Dad!)
I have many more Asperger stories to share about this vacation, but it is almost two in the morning and I am heading to bed for now. <3
Friday, May 27, 2011
Gastroparesis
One thing that I tend to do is to get stuck on the same thing. The same outfit to wear, the same food to eat, et cetera. I remember eating cooked chicken skins for dinner for forty-five days in a row, followed by another binge of macaroni and cheese and hot dogs. Usually, I don't really care for macaroni & cheese but during this time, I couldn't get enough. For the most part, the foods I crave are healthy. I eat a lot of fruits and vegetables. I eat a lot of chicken, but not a lot of other meat.
A few years ago I started losing weight but didn't know why. I was eating healthy. In fact, I had just started a new job in which I had a longer lunch break and I was actually able to consume a whole lunch AND have extra time. I got hooked on salads and chicken, bacon, ranch grinders from Subway. I ate these every day. I even ate soup as well. Lunch ended up being my bigger meal of the day as I wasn't too hungry by dinner time.
I went to the doctor about the weight loss and the other symptoms that I was having to try and find out why. I didn't weigh a lot to begin with and I definitely didn't want to lose any of the weight that I had.
First off, the doctor suggested stress, depression, major lifestyle changes (new job) as the culprit. I assured him that I was absolutely positive that wasn't the case. He wanted me to come back in two weeks. When I returned I had lost some more weight. I was really worried. the doctor wanted me to try some antidepressants. He assured me that when I went back in two more weeks I would have not lost anymore weight and that I would eventually start to gain the weight back. I was frustrated, but I did as I was told because he was the doctor.
I went back in two weeks. I religiously took the antidepressants. Still lost more weight. By this point I had dropped under one hundred pounds. He told me that if I dropped below ninety pounds that he would have to admit me to the hospital. He wanted to switch the antidepressant that I was on to another antidepressant. This made me upset because I knew this wasn't the underlying cause. I wasn't depressed. I was fine except the weight loss. The only thing stressing me out was the weight loss. I agreed to the switch in medication if he agreed to send me for a second opinion with a gastroenterologist. I also went for a psychiatric evaluation that he wanted me to do. That came back fine, as I knew it would. I took the new medication and went for my evaluation with the gastroenterologist.
My first appointment with the gastroenterologist really aggravated me. They asked me if I made myself vomit. They asked me how I felt about my self image. I reminded them nicely that I was the one pushing for the evaluation to get to the bottom of the issue because I was worried and that if I was doing it to myself then I wouldn't have been the one to ask for the referral. They backed off a little saying that I fit the stereotypical profile of someone with an eating disorder, yada yada yada. They asked me again. I was pissed. They went over history, diet, symptoms et cetera and suggested that they could test for things like Celiac Disease, Crohn's, IBS, among others. I was like great, let's find out what it is.
My mom had accompanied me to the appointment. On the way home she was starting to believe the doctors about the depression and eating disorders and such. I reassured her that I knew there was something else going on. I knew I would just have to wait until we had the results and hoped that I wouldn't lose too much weight before then.
The test for Celiac Disease came back negative. Another test that I had to take was a gastric emptying scan. I had to eat food with radioactive material in it and then have my stomach scanned every hour for four hours to see how my stomach was emptying.
The results of my test came back just as I dropped below ninety pounds. Luckily, I didn't have to be admitted to the hospital. I learned that I had gastroparesis. Idiopathic gastroparesis to be exact. I understand why this wasn't something the doctors would initially consider. It is usually a condition that affects diabetics. In fact, about 50% of diabetics have gastroparesis. I am not diabetic.
To help the gastric emptying process and gain the weight back, I was put on four doses of Reglan a day. I took that for about six months. I do not take it now. I am able to manage it by watching my diet. I need to limit the amount of raw vegetables I eat (not a lot of salad) and stay away from lots of fiber. There is more to it than just that little piece, but it is the part that bothers me the most.
For instance...getting stuck on things...I like prunes. I just bought a couple small bags of prunes. I could eat the whole bag right now. Between the three prunes I have eaten and the raw baby carrots that I have consumed this past week, I am starting to suffer from stomach pain, nausea, loss of appetite and some others that I won't mention. This really bites because all I want to eat right now is a prune. Prune juice is okay, but I don't care for prune juice.
A lot of people say there is a correlation between autism and stomach issues. I wonder if gastroparesis is one of those. I have tried to research this online but my findings are inconclusive. Does anyone else out there know anyone that is autistic that has gastroparesis??
A few years ago I started losing weight but didn't know why. I was eating healthy. In fact, I had just started a new job in which I had a longer lunch break and I was actually able to consume a whole lunch AND have extra time. I got hooked on salads and chicken, bacon, ranch grinders from Subway. I ate these every day. I even ate soup as well. Lunch ended up being my bigger meal of the day as I wasn't too hungry by dinner time.
I went to the doctor about the weight loss and the other symptoms that I was having to try and find out why. I didn't weigh a lot to begin with and I definitely didn't want to lose any of the weight that I had.
First off, the doctor suggested stress, depression, major lifestyle changes (new job) as the culprit. I assured him that I was absolutely positive that wasn't the case. He wanted me to come back in two weeks. When I returned I had lost some more weight. I was really worried. the doctor wanted me to try some antidepressants. He assured me that when I went back in two more weeks I would have not lost anymore weight and that I would eventually start to gain the weight back. I was frustrated, but I did as I was told because he was the doctor.
I went back in two weeks. I religiously took the antidepressants. Still lost more weight. By this point I had dropped under one hundred pounds. He told me that if I dropped below ninety pounds that he would have to admit me to the hospital. He wanted to switch the antidepressant that I was on to another antidepressant. This made me upset because I knew this wasn't the underlying cause. I wasn't depressed. I was fine except the weight loss. The only thing stressing me out was the weight loss. I agreed to the switch in medication if he agreed to send me for a second opinion with a gastroenterologist. I also went for a psychiatric evaluation that he wanted me to do. That came back fine, as I knew it would. I took the new medication and went for my evaluation with the gastroenterologist.
My first appointment with the gastroenterologist really aggravated me. They asked me if I made myself vomit. They asked me how I felt about my self image. I reminded them nicely that I was the one pushing for the evaluation to get to the bottom of the issue because I was worried and that if I was doing it to myself then I wouldn't have been the one to ask for the referral. They backed off a little saying that I fit the stereotypical profile of someone with an eating disorder, yada yada yada. They asked me again. I was pissed. They went over history, diet, symptoms et cetera and suggested that they could test for things like Celiac Disease, Crohn's, IBS, among others. I was like great, let's find out what it is.
My mom had accompanied me to the appointment. On the way home she was starting to believe the doctors about the depression and eating disorders and such. I reassured her that I knew there was something else going on. I knew I would just have to wait until we had the results and hoped that I wouldn't lose too much weight before then.
The test for Celiac Disease came back negative. Another test that I had to take was a gastric emptying scan. I had to eat food with radioactive material in it and then have my stomach scanned every hour for four hours to see how my stomach was emptying.
The results of my test came back just as I dropped below ninety pounds. Luckily, I didn't have to be admitted to the hospital. I learned that I had gastroparesis. Idiopathic gastroparesis to be exact. I understand why this wasn't something the doctors would initially consider. It is usually a condition that affects diabetics. In fact, about 50% of diabetics have gastroparesis. I am not diabetic.
To help the gastric emptying process and gain the weight back, I was put on four doses of Reglan a day. I took that for about six months. I do not take it now. I am able to manage it by watching my diet. I need to limit the amount of raw vegetables I eat (not a lot of salad) and stay away from lots of fiber. There is more to it than just that little piece, but it is the part that bothers me the most.
For instance...getting stuck on things...I like prunes. I just bought a couple small bags of prunes. I could eat the whole bag right now. Between the three prunes I have eaten and the raw baby carrots that I have consumed this past week, I am starting to suffer from stomach pain, nausea, loss of appetite and some others that I won't mention. This really bites because all I want to eat right now is a prune. Prune juice is okay, but I don't care for prune juice.
A lot of people say there is a correlation between autism and stomach issues. I wonder if gastroparesis is one of those. I have tried to research this online but my findings are inconclusive. Does anyone else out there know anyone that is autistic that has gastroparesis??
Wednesday, May 11, 2011
My Secret
I may as well reveal another piece of information to help you understand my story. I am on the autism spectrum as well. It wasn't until adulthood that I was diagnosed, but I have struggled all of my life dealing with something that I didn't know I had.
First of all, let us talk about focus. At any given point in my life I have always had something to hyper-focus on. Playing music, progressing at the bank, the three hours I spent watching and then researching this praying mantis that caught my eye...if it sparks my interest I need to know all about it. If it is something that I could care less about, forget it. I dislike reading but have read almost every good book about autism because I wanted to learn everything that I could. Television to me primarily exists to learn about animals and other non-fiction topics. Except for the History Channel...never really liked history. Drives me nuts when the television is on for an extended period of time without any valuable content. Doesn't sound all too bad, does it?
Let me talk about some of my quirky behaviors and 'things'. First of all, thankfully I have a husband that will do the dishes. I can not for the life of me touch a dirty dish. It feels horrible. Saliva, I can't stand the smell of it. The sound of someone drinking is like fingernails on a chalkboard. I always have to walk with Craig on my left. I have a keen sense of smell and find it almost intolerable to smell things I dislike. Strong perfumes and flower scented candles are horrible. I can't stand cigarette smoke either, but that is just disgusting anyway. I use the same shampoo, conditioner, soap, deodorant et cetera because I don't like dealing with the different smells. The other day I bought new shampoo and conditioner and I decided to try a cheaper selection but I couldn't get over the different smell. This is a very small list of things that, well, I dunno, are normal for me but apparently others find odd.
Also, I think I appear to be a 'normal' looking person and don't really ever notice that I am not. I am happy with myself so I don't notice things all too much, but today, for instance, something popped out to me again. I was waiting at the kids' gymnastics class, among a bunch of other moms. I was quietly sitting on the couch reading a book about another family's story on autism, trying to blend into my surroundings as the moms were gathering in front of the observation window anticipating the end of class, when I noticed their feet. Which prompted me to inspect their hair, dress, makeup, et cetera. Apparently all of these moms just had pedicures, dressed the same, stylish flip flops, pants and shirt. Hair done as if they had just walked out of a beauty parlor and about all were wearing make up. They were all gathered together, talking, looked the same. They seemed nice. Part of me envied them. Part of me wondered why they weren't including me in their conversations, but if they were to talk to me I wouldn't know what to say. Maybe they all went to school together? One mom that was sitting on the couch next to me did attempt conversing with me. She asked me how old my kids were. I asked her the same back because that is what the polite thing is to do. I was grateful for the conversation, but didn't know how to keep it going. The easiest thing for me to do was to hide behind my book and blend into the couch. Is it me? Am I not approachable? I am never mean or rude to anyone, as far as I know, I don't mean to be and haven't been told that I was. My anxiety would take over anyway and I wouldn't be able to function.
I've worn makeup maybe six days out of my whole life. I don't have long enough fingernails or toenails to worry about painting. I wash my hair in the shower and don't brush it until I am in the car. I don't shower until right before I leave the house, but shower I must before I leave. I can't go into Subway because I can't stand the smell. Going into one would require that I shower immediately after. I do love their grinders, though. I wear what I like and what feels comfortable. I have exactly one pair of jeans that I can tolerate wearing.
I have a lot of anxiety. Mainly, I want to know what people think of me. Honestly, no sugar coating. I am not good at reading in between the lines, but I am totally happy with direct, straightforward information. If I am confused by something, I am not afraid to ask. Likewise, anything I say to you is complete honesty. I don't see the point in telling untruths. If you ask me if I like your haircut, and I don't, what purpose does it do if I tell you it looks great? What I think about your haircut doesn't matter anyway because I'm not the one who has to wear it. If you like it, all is good. If you dislike it, go get it fixed.
Socially, I love spending time with my family. I don't have the anxiety I do when I am with other people. Everytime I am at playgroup, storytime, gymnastics, baseball...I am riddled with anxiety. I just recently went back on my anxiety medication and it seems to be helping a little bit, but it doesn't want me to go 'hang out' with zillions of people. It helps me get through what I need to.
Parenting...how does this affect my parenting? Well, housework could use a lot of improvement. That is something that I am not interested in at all. The kids? I love them so much and they are the source of my focus right now. I would say I am an A+ mom. Sometimes I feel that because I am the same as the two on the spectrum, I can see where they are coming from and understand them a bit more, but most of the time I feel as if I am in a world of my own and each of them in theirs. I am so focused on their lives and their growth that I lose track of myself. This is becoming more apparent as time goes on. In less than a year and a half Caitlin will be in kindergarten. All of the kids will be in school. Time to focus on myself and my career. But that is the thing, I feel lost.
My last career, not my last job, was at the bank. I hyper-focused on my work (to the exclusion of family) and grew in the company faster than anyone prior. Being at the bank for just three years with no prior banking experience, I was promoted to Branch President of another branch. My lending ratings and reviews were among the top few of the company. My only shortfall was managing people. I couldn't understand (and still can't) understand why others don't have the same drive and focus that I do. I never understood why some people could get away with things that others couldn't. And why were there rules if they weren't enforced? I couldn't understand the social piece...I can't even explain it now. I didn't want to be a babysitter.
I loved the bank. I loved the customers. Everything came easy, except the managing part. Do I want to get back into banking when it is time to go back to work? Probably not. But what am I cut out to do? I am a gifted musician, so I've been told, but my anxiety gets in the way. Also, I am a perfectionist and hear every little mistake I make. I always want to improve whatever it is that I am doing to the point that I find perfection. Music isn't going to be that for me. I like to play the piano for relaxation. I sing because I enjoy it. I play the flute because it is fun. I don't want these pleasures to become my job. I want them to be my refuge.
So, now I am stuck with nothing. I love science. Math and English are okay as well. But what do I want to do? I would like to go back to school, but first I have to decided what to study. To decide that I have to take into consideration my 'unique makeup of abilities and disabilities' as my psychiatrist put it. This is the first time in my life that I have felt lost.
First of all, let us talk about focus. At any given point in my life I have always had something to hyper-focus on. Playing music, progressing at the bank, the three hours I spent watching and then researching this praying mantis that caught my eye...if it sparks my interest I need to know all about it. If it is something that I could care less about, forget it. I dislike reading but have read almost every good book about autism because I wanted to learn everything that I could. Television to me primarily exists to learn about animals and other non-fiction topics. Except for the History Channel...never really liked history. Drives me nuts when the television is on for an extended period of time without any valuable content. Doesn't sound all too bad, does it?
Let me talk about some of my quirky behaviors and 'things'. First of all, thankfully I have a husband that will do the dishes. I can not for the life of me touch a dirty dish. It feels horrible. Saliva, I can't stand the smell of it. The sound of someone drinking is like fingernails on a chalkboard. I always have to walk with Craig on my left. I have a keen sense of smell and find it almost intolerable to smell things I dislike. Strong perfumes and flower scented candles are horrible. I can't stand cigarette smoke either, but that is just disgusting anyway. I use the same shampoo, conditioner, soap, deodorant et cetera because I don't like dealing with the different smells. The other day I bought new shampoo and conditioner and I decided to try a cheaper selection but I couldn't get over the different smell. This is a very small list of things that, well, I dunno, are normal for me but apparently others find odd.
Also, I think I appear to be a 'normal' looking person and don't really ever notice that I am not. I am happy with myself so I don't notice things all too much, but today, for instance, something popped out to me again. I was waiting at the kids' gymnastics class, among a bunch of other moms. I was quietly sitting on the couch reading a book about another family's story on autism, trying to blend into my surroundings as the moms were gathering in front of the observation window anticipating the end of class, when I noticed their feet. Which prompted me to inspect their hair, dress, makeup, et cetera. Apparently all of these moms just had pedicures, dressed the same, stylish flip flops, pants and shirt. Hair done as if they had just walked out of a beauty parlor and about all were wearing make up. They were all gathered together, talking, looked the same. They seemed nice. Part of me envied them. Part of me wondered why they weren't including me in their conversations, but if they were to talk to me I wouldn't know what to say. Maybe they all went to school together? One mom that was sitting on the couch next to me did attempt conversing with me. She asked me how old my kids were. I asked her the same back because that is what the polite thing is to do. I was grateful for the conversation, but didn't know how to keep it going. The easiest thing for me to do was to hide behind my book and blend into the couch. Is it me? Am I not approachable? I am never mean or rude to anyone, as far as I know, I don't mean to be and haven't been told that I was. My anxiety would take over anyway and I wouldn't be able to function.
I've worn makeup maybe six days out of my whole life. I don't have long enough fingernails or toenails to worry about painting. I wash my hair in the shower and don't brush it until I am in the car. I don't shower until right before I leave the house, but shower I must before I leave. I can't go into Subway because I can't stand the smell. Going into one would require that I shower immediately after. I do love their grinders, though. I wear what I like and what feels comfortable. I have exactly one pair of jeans that I can tolerate wearing.
I have a lot of anxiety. Mainly, I want to know what people think of me. Honestly, no sugar coating. I am not good at reading in between the lines, but I am totally happy with direct, straightforward information. If I am confused by something, I am not afraid to ask. Likewise, anything I say to you is complete honesty. I don't see the point in telling untruths. If you ask me if I like your haircut, and I don't, what purpose does it do if I tell you it looks great? What I think about your haircut doesn't matter anyway because I'm not the one who has to wear it. If you like it, all is good. If you dislike it, go get it fixed.
Socially, I love spending time with my family. I don't have the anxiety I do when I am with other people. Everytime I am at playgroup, storytime, gymnastics, baseball...I am riddled with anxiety. I just recently went back on my anxiety medication and it seems to be helping a little bit, but it doesn't want me to go 'hang out' with zillions of people. It helps me get through what I need to.
Parenting...how does this affect my parenting? Well, housework could use a lot of improvement. That is something that I am not interested in at all. The kids? I love them so much and they are the source of my focus right now. I would say I am an A+ mom. Sometimes I feel that because I am the same as the two on the spectrum, I can see where they are coming from and understand them a bit more, but most of the time I feel as if I am in a world of my own and each of them in theirs. I am so focused on their lives and their growth that I lose track of myself. This is becoming more apparent as time goes on. In less than a year and a half Caitlin will be in kindergarten. All of the kids will be in school. Time to focus on myself and my career. But that is the thing, I feel lost.
My last career, not my last job, was at the bank. I hyper-focused on my work (to the exclusion of family) and grew in the company faster than anyone prior. Being at the bank for just three years with no prior banking experience, I was promoted to Branch President of another branch. My lending ratings and reviews were among the top few of the company. My only shortfall was managing people. I couldn't understand (and still can't) understand why others don't have the same drive and focus that I do. I never understood why some people could get away with things that others couldn't. And why were there rules if they weren't enforced? I couldn't understand the social piece...I can't even explain it now. I didn't want to be a babysitter.
I loved the bank. I loved the customers. Everything came easy, except the managing part. Do I want to get back into banking when it is time to go back to work? Probably not. But what am I cut out to do? I am a gifted musician, so I've been told, but my anxiety gets in the way. Also, I am a perfectionist and hear every little mistake I make. I always want to improve whatever it is that I am doing to the point that I find perfection. Music isn't going to be that for me. I like to play the piano for relaxation. I sing because I enjoy it. I play the flute because it is fun. I don't want these pleasures to become my job. I want them to be my refuge.
So, now I am stuck with nothing. I love science. Math and English are okay as well. But what do I want to do? I would like to go back to school, but first I have to decided what to study. To decide that I have to take into consideration my 'unique makeup of abilities and disabilities' as my psychiatrist put it. This is the first time in my life that I have felt lost.
Monday, May 2, 2011
Asperger's in Public
On Sunday we went to a local wildlife festival. They hold this once a year and it is a very fun place to take the kids. Everyone was excited to go, especially Kyle.
We arrived early but still had to park quite a bit away from the event. As we walked towards the entrance we came up to a presentation going on about turtles. A group of about thirty people were listening to the leader talk about turtles and watching him remove a couple painted turtles that he caught in the trap. Kyle was so excited but very frustrated. He loudly was proclaiming to everyone that he couldn't see and tried barging through the cluster to get a closer look. I took him aside and tried explaining to him that he would get a chance to see and that these people were trying to listen to what the gentleman had to say about the turtles. The rest of the world did not matter to Kyle, so I decided to keep on walking so that way the crowd could continue to enjoy the presentation.
We made it to the entrance, paid the admission, then set out to decide what we were going to check out first. We followed Kyle in the direction he wanted to go to. It was a presentation on creepy crawlers. As we were heading in that direction we came upon another cluster around a huge tortoise. Kyle runs up to start touching it...complete disregard to the people that were posing with it for a picture. I came up right behind Kyle and explained that there was a line and that these people were trying to pose for a photograph. To him, it was only Kyle and the tortoise in the world at that moment and that was all that mattered. I gently removed Kyle from the tortoise. The gentleman that was patiently waiting to take the picture of his family smiled and said 'thank you' which is always nice to see and hear. As I was 'removing' Kyle from the tortoise he was loudly yelling, pulling away from me and causing a scene. I tried holding his hand and he kept throwing himself on the ground. I stood there in line bear hugging him (he likes deep pressure) trying to calm him and explaining that he would get a chance to touch the tortoise but that we had to be respectful to the people that were waiting before us. The wait was literally only a minute, but the temper tantrum lasted the whole time. No one said anything to me, but their looks said it all. I usually don't speak up, but one lady was really bothering me with her looks so I said unapologetically, "Sorry. My son has Asperger's." She didn't respond but she stopped her staring.
I don't like situations like this. Talking with Kyle's psychiatrist she said that there really isn't anything you can do about it but have a thick skin. I agree with this, but wish that it wasn't that way. I feel like the easiest thing to do (but obviously not something I would do) when I go anywhere is to make a public announcement so that way everyone is aware of the situation. My son doesn't look any different than anyone else, but that doesn't mean that the struggles aren't there.
After the first hour, the rest of the day went rather well. We actually were able to stay there five hours because things went that great. After the initial excitement wore off, Kyle was more receptive to my instructions. 'More receptive' does not mean that we didn't have anymore meltdowns, just that they weren't as severe.
Also, if you are even thinking of suggesting that maybe this isn't somewhere to take my child...don't even say it. Not only does my child have the right to be there and have as much fun as everyone else, how else is he supposed to learn? All of these struggles are learning moments. Learning for Kyle, myself and any bystanders. How can anyone be expected to know how to stand in a line without doing it a couple of times? It might just take my child a few hundred more times than the 'normal' child to do so. But, I bet those 'normal' kids don't know half the stuff that my child does. :)
We arrived early but still had to park quite a bit away from the event. As we walked towards the entrance we came up to a presentation going on about turtles. A group of about thirty people were listening to the leader talk about turtles and watching him remove a couple painted turtles that he caught in the trap. Kyle was so excited but very frustrated. He loudly was proclaiming to everyone that he couldn't see and tried barging through the cluster to get a closer look. I took him aside and tried explaining to him that he would get a chance to see and that these people were trying to listen to what the gentleman had to say about the turtles. The rest of the world did not matter to Kyle, so I decided to keep on walking so that way the crowd could continue to enjoy the presentation.
We made it to the entrance, paid the admission, then set out to decide what we were going to check out first. We followed Kyle in the direction he wanted to go to. It was a presentation on creepy crawlers. As we were heading in that direction we came upon another cluster around a huge tortoise. Kyle runs up to start touching it...complete disregard to the people that were posing with it for a picture. I came up right behind Kyle and explained that there was a line and that these people were trying to pose for a photograph. To him, it was only Kyle and the tortoise in the world at that moment and that was all that mattered. I gently removed Kyle from the tortoise. The gentleman that was patiently waiting to take the picture of his family smiled and said 'thank you' which is always nice to see and hear. As I was 'removing' Kyle from the tortoise he was loudly yelling, pulling away from me and causing a scene. I tried holding his hand and he kept throwing himself on the ground. I stood there in line bear hugging him (he likes deep pressure) trying to calm him and explaining that he would get a chance to touch the tortoise but that we had to be respectful to the people that were waiting before us. The wait was literally only a minute, but the temper tantrum lasted the whole time. No one said anything to me, but their looks said it all. I usually don't speak up, but one lady was really bothering me with her looks so I said unapologetically, "Sorry. My son has Asperger's." She didn't respond but she stopped her staring.
I don't like situations like this. Talking with Kyle's psychiatrist she said that there really isn't anything you can do about it but have a thick skin. I agree with this, but wish that it wasn't that way. I feel like the easiest thing to do (but obviously not something I would do) when I go anywhere is to make a public announcement so that way everyone is aware of the situation. My son doesn't look any different than anyone else, but that doesn't mean that the struggles aren't there.
After the first hour, the rest of the day went rather well. We actually were able to stay there five hours because things went that great. After the initial excitement wore off, Kyle was more receptive to my instructions. 'More receptive' does not mean that we didn't have anymore meltdowns, just that they weren't as severe.
Also, if you are even thinking of suggesting that maybe this isn't somewhere to take my child...don't even say it. Not only does my child have the right to be there and have as much fun as everyone else, how else is he supposed to learn? All of these struggles are learning moments. Learning for Kyle, myself and any bystanders. How can anyone be expected to know how to stand in a line without doing it a couple of times? It might just take my child a few hundred more times than the 'normal' child to do so. But, I bet those 'normal' kids don't know half the stuff that my child does. :)
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