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.
Wednesday, May 11, 2011
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. :)
Monday, April 18, 2011
Two Aspies and a Museum
This week is Kyle's school vacation. Monday, we took a trip to the Montshire Museum, one of the kids' favorite places to go. Kyle's therapist was going to meet us a little after we got there. I wanted the kids to partake in the sound activity at 11:00, which was starting just after our arrival, so we went in and went upstairs to the activity. I managed to dodge the meltdowns about who got to check us in and who got to pass out the admission stickers by planning a little ahead. Usually, I let one child show the membership card, one child show my license and the third child pass out the stickers. Passing out the stickers usually ends up in a fight about people wanting to take their own, or it wasn't put in the 'right' place, et cetera. I preemtped this whole situation because we didn't have a lot of time and told them that I was going to check us in and hand out the stickers and if that didn't work we weren't going to go. Things went smooth. You may wonder why I just don't do that every time. That would be the easiest thing for me anyway. I let them get involved and take on different tasks so that way they can learn to take turns and learn the process of what to do when you get there. I take the 'hard' route in many situations like this. How do I expect the kids to learn if they are not involved??
So, the activity was about sound. The kids learned about sound and how you hear. Then they had the chance to make noise makers out of straws. It basically looks like a long oboe reed when you are done. This activity involved straws and scissors. Lucky for me the straws had different color stripes on and the scissors varied in color as well. Caitlin was handed a green straw and Kyle was handed a red straw. Christopher was fine with his yellow straw, but I had to convince Kyle and Caitlin that it was okay that they had green and red straws and stop them from asking for a different color. Same thing with the scissors. Apparently they don't have the 'correct' color scissors either. Oh my goodness. If you think I may have lost it by this point, it gets even better. We were instructed to flatten one end of the straw and cut the corners off. I tried explaining to Caitlin what we had to do and I also showed her that we did the same to her brother's straw. I cut the straw for her and she had a fit! "Mommy!! (big mean frown) It's all your fault!" She carried on and on about how she didn't want her straw cut (the straw she didn't want anyway because it was the wrong color)...I tried to show her how it worked by blowing into it and she just didn't care.
This whole thing lasted only about fifteen minutes. Out the window I saw Kyle's therapist show up and told the kids we needed to go downstairs to meet her. They complied, but I had to listen to Caitlin the whole way about the color of her straw and how it was my fault. She even stormed off to the coat room and protested, thinking that she would end up with the 'right' straw. She didn't. And...we did end up having rather a fun day even with a few scenarios like the one I talked about.
So, the activity was about sound. The kids learned about sound and how you hear. Then they had the chance to make noise makers out of straws. It basically looks like a long oboe reed when you are done. This activity involved straws and scissors. Lucky for me the straws had different color stripes on and the scissors varied in color as well. Caitlin was handed a green straw and Kyle was handed a red straw. Christopher was fine with his yellow straw, but I had to convince Kyle and Caitlin that it was okay that they had green and red straws and stop them from asking for a different color. Same thing with the scissors. Apparently they don't have the 'correct' color scissors either. Oh my goodness. If you think I may have lost it by this point, it gets even better. We were instructed to flatten one end of the straw and cut the corners off. I tried explaining to Caitlin what we had to do and I also showed her that we did the same to her brother's straw. I cut the straw for her and she had a fit! "Mommy!! (big mean frown) It's all your fault!" She carried on and on about how she didn't want her straw cut (the straw she didn't want anyway because it was the wrong color)...I tried to show her how it worked by blowing into it and she just didn't care.
This whole thing lasted only about fifteen minutes. Out the window I saw Kyle's therapist show up and told the kids we needed to go downstairs to meet her. They complied, but I had to listen to Caitlin the whole way about the color of her straw and how it was my fault. She even stormed off to the coat room and protested, thinking that she would end up with the 'right' straw. She didn't. And...we did end up having rather a fun day even with a few scenarios like the one I talked about.
Tuesday, April 12, 2011
Summer School
This morning marked another IEP meeting. Looking back, the journey it took to get an IEP and the years of struggles along the way was all worth it now. Kyle's IEP team is great. It is nice to leave a school meeting refreshed now, instead of frustrated and furious. Now it is just meeting a tweaking accommodations and supports that are in place. Also, since we are rapidly approaching the end of the school year, it was time to discuss the possibility of summer school.
Kyle's academic level does not qualify him for academic summer school, but they felt that he qualified for summer school for social skills. We had discussed this briefly a couple of months ago and I have been struggling with my opinions since.
We do a lot of 'stuff' during the summer that we just aren't able to do during the school year. We basically live at the Montshire Museum of Science and Six Flags. Who has time to fit in summer school? Sending him to summer school would take away from my time with him. But then again...I have to remember that it is his time, not mine, and that I mainly needed to look at what was best for him.
I also talked with Kyle about summer school. To my amazement he was excited. Seriously? What kid wants to go to summer school? Apparently mine. So, I went to the meeting with an open mind.
Summer school for social skills is held four days a week just for half a day. They do a variety of things in this group. For instance, Mondays they plan on what they are going to prepare for lunch on Tuesday, they compile a shopping list, split it among the group and take off to the grocery store. They are responsible for locating the items, asking the appropriate person for help when needed and paying for the items and making sure they have the correct change. They also incorporate in the program bal-a-vis-x which I just learned about today and sounds wonderful. Here's the link http://www.bal-a-vis-x.com/whobenifits.htm
Summer school runs for five weeks, in which one of those weeks we will be in Florida, so he really is only going for four weeks. I could take up pages and pages writing about all of the positive aspects of this program but I'll save it for outside discussion if you would like to know more.
One other added benefit is that Kyle is going to take the bus. Currently Kyle is dropped off and picked up at school by us. We are not required to do this, the bus stops right near our house, but a few years ago he was having difficulty on the bus and it was just easier all around to pick him up and drop him off. This summer he will ride the bus with less people and can hopefully transition to regular school transportation next year. He will probably still need to be placed behind the bus driver, but it will be that much more social exposure that he gets.
This is such a great opportunity for Kyle that I am glad he is able to participate it. I will definitely blog about how the program goes this summer. <3
Kyle's academic level does not qualify him for academic summer school, but they felt that he qualified for summer school for social skills. We had discussed this briefly a couple of months ago and I have been struggling with my opinions since.
We do a lot of 'stuff' during the summer that we just aren't able to do during the school year. We basically live at the Montshire Museum of Science and Six Flags. Who has time to fit in summer school? Sending him to summer school would take away from my time with him. But then again...I have to remember that it is his time, not mine, and that I mainly needed to look at what was best for him.
I also talked with Kyle about summer school. To my amazement he was excited. Seriously? What kid wants to go to summer school? Apparently mine. So, I went to the meeting with an open mind.
Summer school for social skills is held four days a week just for half a day. They do a variety of things in this group. For instance, Mondays they plan on what they are going to prepare for lunch on Tuesday, they compile a shopping list, split it among the group and take off to the grocery store. They are responsible for locating the items, asking the appropriate person for help when needed and paying for the items and making sure they have the correct change. They also incorporate in the program bal-a-vis-x which I just learned about today and sounds wonderful. Here's the link http://www.bal-a-vis-x.com/whobenifits.htm
Summer school runs for five weeks, in which one of those weeks we will be in Florida, so he really is only going for four weeks. I could take up pages and pages writing about all of the positive aspects of this program but I'll save it for outside discussion if you would like to know more.
One other added benefit is that Kyle is going to take the bus. Currently Kyle is dropped off and picked up at school by us. We are not required to do this, the bus stops right near our house, but a few years ago he was having difficulty on the bus and it was just easier all around to pick him up and drop him off. This summer he will ride the bus with less people and can hopefully transition to regular school transportation next year. He will probably still need to be placed behind the bus driver, but it will be that much more social exposure that he gets.
This is such a great opportunity for Kyle that I am glad he is able to participate it. I will definitely blog about how the program goes this summer. <3
Friday, March 18, 2011
My Second Child on the Spectrum
Writing this, only hours have passed since getting my daughter's Asperger's diagnosis. Every post that I have written so far has been about my son. Starting today, I will write about my daughter as well.
My daughter, she just turned four in January, is the happiest, calmest little gal you will every meet. Always singing, loves spinning dresses, cats, princesses...the typical girl. What started concerning me was the lack of wanting to play with other children her same age. I assumed that it was because she is home with me and her brother all of the time and is lacking that social piece that you get from being at daycare or school. She was at a great daycare for two and a half years before I decided to stay home.
When I decided to stay home I decided not to stay home. Sounds contradicting? Well, although I get to "stay home" with the kids, "at home" is rarely where we are. Between playgroups, story times, gymnastics, lego club, sports...we are never home! I know that social development is so important that I knew they needed more than me in their lives.
Learning about Kyle and his diagnosis of Asperger's (something I had never heard about until like three years ago) I found it very important to research everything I could about the spectrum. One piece I learned was that it is diagnosed more in boys than girls and one reason for this is that girls have different ways of showing it. The little hints I was getting from Caitlin, my wonderful little girl, I first passed off as paranoia. The lack of social progression I passed off as that she was the baby of the family and that she "stays at home" with me. I started to become worried, spoke with the pediatrician (who was equally, if not more concerned) and then she was evaluated by child development doctors. They were very glad that I listened to my instincts instead of passing them off.
So, I was sitting in the room (Caitlin was hiding in the corner) when they went over the evaluations. I answered a few questions they wanted to clarify, and then they gave me the diagnosis. The process was so fast compared to my son (that took years of evaluating, but there is more going on with the ADHD piece with that too) that I really wasn't expecting an answer today. But when they delivered it, it was like my heart sank. I can't even begin to express all of the emotions that went through my body. I was sad for her, happy that I listened to my instincts, relieved that it is something that we can work on, guilt because I feel that it is my fault somehow. Guilt, I know that I didn't cause it, but it is my genetics that have caused it. I had contemplated whether or not to have two more kids down the road. Well, 66.67% of my biological children are on the spectrum...so chances are if I had more, they would be too. I am not saying it is a negative thing to be on the spectrum, but it takes extra time, effort, patience, and money to care for kids on the spectrum and how much time will I have to devote to all of my kids and make sure that I am meeting everyone's needs, including my own? I am not able to answer this now but it is on my mind.
The car ride home...I took the long way. Nice pleasant backroads. I was able to breathe, chill, cry, without the rush of the interstate traffic. I made some phone calls, but I lost service for a big part which I think was a good thing because it let my brain just mellow out. Writing this, I still feel like I am in a fog.
So, today is day one. Tomorrow is another day. What I have learned from today will help to make tomorrow even better.
My daughter, she just turned four in January, is the happiest, calmest little gal you will every meet. Always singing, loves spinning dresses, cats, princesses...the typical girl. What started concerning me was the lack of wanting to play with other children her same age. I assumed that it was because she is home with me and her brother all of the time and is lacking that social piece that you get from being at daycare or school. She was at a great daycare for two and a half years before I decided to stay home.
When I decided to stay home I decided not to stay home. Sounds contradicting? Well, although I get to "stay home" with the kids, "at home" is rarely where we are. Between playgroups, story times, gymnastics, lego club, sports...we are never home! I know that social development is so important that I knew they needed more than me in their lives.
Learning about Kyle and his diagnosis of Asperger's (something I had never heard about until like three years ago) I found it very important to research everything I could about the spectrum. One piece I learned was that it is diagnosed more in boys than girls and one reason for this is that girls have different ways of showing it. The little hints I was getting from Caitlin, my wonderful little girl, I first passed off as paranoia. The lack of social progression I passed off as that she was the baby of the family and that she "stays at home" with me. I started to become worried, spoke with the pediatrician (who was equally, if not more concerned) and then she was evaluated by child development doctors. They were very glad that I listened to my instincts instead of passing them off.
So, I was sitting in the room (Caitlin was hiding in the corner) when they went over the evaluations. I answered a few questions they wanted to clarify, and then they gave me the diagnosis. The process was so fast compared to my son (that took years of evaluating, but there is more going on with the ADHD piece with that too) that I really wasn't expecting an answer today. But when they delivered it, it was like my heart sank. I can't even begin to express all of the emotions that went through my body. I was sad for her, happy that I listened to my instincts, relieved that it is something that we can work on, guilt because I feel that it is my fault somehow. Guilt, I know that I didn't cause it, but it is my genetics that have caused it. I had contemplated whether or not to have two more kids down the road. Well, 66.67% of my biological children are on the spectrum...so chances are if I had more, they would be too. I am not saying it is a negative thing to be on the spectrum, but it takes extra time, effort, patience, and money to care for kids on the spectrum and how much time will I have to devote to all of my kids and make sure that I am meeting everyone's needs, including my own? I am not able to answer this now but it is on my mind.
The car ride home...I took the long way. Nice pleasant backroads. I was able to breathe, chill, cry, without the rush of the interstate traffic. I made some phone calls, but I lost service for a big part which I think was a good thing because it let my brain just mellow out. Writing this, I still feel like I am in a fog.
So, today is day one. Tomorrow is another day. What I have learned from today will help to make tomorrow even better.
Wednesday, March 16, 2011
Something Simple That Made My Day
About a week ago I got a text from my husband. He drops Kyle off at school in the morning. The drop off place at school is in the lower parking lot, a little bit away from school. The walk isn't bad at all, but on a rainy morning like it was this particular day, it seems a lot longer.
It takes a lot of effort (both on our part and on Kyle's part) to make sure that he has everything for school every day. Things like homework, shoes, boots, snowpants, hats, gloves...the list goes on. For the most part, we try to leave things at school so that way we don't have to worry about them. But, sometimes things find a way back home and then we have to remember to send them back. It doesn't sound like a big issue...but believe me, it is! So, the one thing that we don't even bother sending, is an umbrella. When it rains, they have indoor recess. The only time he is outside on these rainy days is when my husband drops him off and I pick him up. (The reason why he doesn't ride the bus is a separate story in itself)
So, back this particular rainy day...
My husband dropped him off down in the lower lot. Poor little guy was going to have to walk all the way up in the rain. Well, there was this girl who was headed up to school as well. She had am umbrella. She asked Kyle if he would like to share her umbrella. So, they walked up to school together, sharing the umbrella. This may not seem like a big deal, but to me it is so big. It shows me that kids are caring. It shows me that kids have compassion. It shows me that there is hope for Kyle and his social relationships. When I read the message from my husband, I cried a few tears. Those were some of the happy tears that I have shed in this journey with Kyle.
It takes a lot of effort (both on our part and on Kyle's part) to make sure that he has everything for school every day. Things like homework, shoes, boots, snowpants, hats, gloves...the list goes on. For the most part, we try to leave things at school so that way we don't have to worry about them. But, sometimes things find a way back home and then we have to remember to send them back. It doesn't sound like a big issue...but believe me, it is! So, the one thing that we don't even bother sending, is an umbrella. When it rains, they have indoor recess. The only time he is outside on these rainy days is when my husband drops him off and I pick him up. (The reason why he doesn't ride the bus is a separate story in itself)
So, back this particular rainy day...
My husband dropped him off down in the lower lot. Poor little guy was going to have to walk all the way up in the rain. Well, there was this girl who was headed up to school as well. She had am umbrella. She asked Kyle if he would like to share her umbrella. So, they walked up to school together, sharing the umbrella. This may not seem like a big deal, but to me it is so big. It shows me that kids are caring. It shows me that kids have compassion. It shows me that there is hope for Kyle and his social relationships. When I read the message from my husband, I cried a few tears. Those were some of the happy tears that I have shed in this journey with Kyle.
Tuesday, March 1, 2011
The Journey and the Emotions
I have heard a common phrase that is used by parents after they learn that their child is on the spectrum. That they "mourn the loss of their child". I am not saying that this isn't the case with these parents, but it was quite different for me.
Kyle has always been the same, we never lost anything. He has Asperger's Syndrome and never lost any of his abilities, speech was never an issue. I still have huge hopes and dreams for him. I know that he can be whatever he wants to be. For him, there will just be a few more hurdles along the way.
I admit, every time I read the letter from the doctor which states his diagnosis, I can't help but cry. The tears come from a place inside that confirms something I had known since before he was three. I no longer feel that I was a bad parent. I praise myself for never giving up. There were many times giving up seemed easier. The fighter in me always won.
I knew there was something 'unique' about Kyle long before he turned three. The endless spinning in circles, running...the constant battles. ADHD crossed my mind. At his three year checkup I told his pediatrician about my concerns. He blew me off and said they wait until school to deal with that. I wanted whatever it was to be under control by school.
When he was three and a half I married my husband. My mom was at my wedding and was in charge of watching Kyle. She feels that she missed my wedding. Kyle kept taking off, running outside of the reception hall, constantly. After having two more little ones, it is clear how severe this was. (I was thinking of this day recently because I was scanning some wedding pictures on the computer)
By the time Kyle was four, things weren't getting better. The terrible twos never left. At his annual checkup I refused to leave without being referred. We were referred to one psychologist who met with all of us and performed many tests on Kyle. He was then diagnosed with moderate to severe ADHD-HI and ODD. Finally, we knew what was going on and could go from there.
Behavioral therapy, family counseling and a trial of every ADHD medication offered little relief. Along the way we switched therapists. The place we go to now is great. Shortly after working with them with the ADHD and behavioral therapy, they asked me if anyone ever mentioned Asperger's to me. I had never heard of that term before. They went on to explain what it was, and it was if they were describing my child. They wanted him to be evaluated in depth to make sure that it wasn't just severe ADHD. He received the provisional diagnosis of Asperger's in first grade. A year and a half later he received the definitive diagnosis. When I discussed this with his first grade teacher (first grade was a very rough year for him) she said she had wondered if he was.
Now, we are finishing the last leg of third grade. We still have our hurdles, battles and sensory issues. Changes in routine, transitions, impulsivity, safety and social issues are the main things we have issues with. But, along with that, we have the support of the IEP, our knowledge and acceptance of his condition, and his classmates that are more accepting of him now that they know. He also has two therapists, the best I have ever met, that work with him one on one and in small social groups. He also participates in numerous extracurricular activities that help with his social growth and also keep him active. Boy does he have a lot of energy!
How do I keep sane? I'm one tough cookie! I am just thankful that I pushed along. Never doubt your gut instinct. I also have a five year old son and a four year old daughter that are neurotypical. They act "appropriately" like neurotypical kids are "supposed" to act. That, to me, confirms that I am not a bad parent. The higher power, known to most as God, gave Kyle to me because he knew that I would do the best for him. He knows that Kyle is in the best place. My kids are my world. I love each of them for who they are.
Kyle has always been the same, we never lost anything. He has Asperger's Syndrome and never lost any of his abilities, speech was never an issue. I still have huge hopes and dreams for him. I know that he can be whatever he wants to be. For him, there will just be a few more hurdles along the way.
I admit, every time I read the letter from the doctor which states his diagnosis, I can't help but cry. The tears come from a place inside that confirms something I had known since before he was three. I no longer feel that I was a bad parent. I praise myself for never giving up. There were many times giving up seemed easier. The fighter in me always won.
I knew there was something 'unique' about Kyle long before he turned three. The endless spinning in circles, running...the constant battles. ADHD crossed my mind. At his three year checkup I told his pediatrician about my concerns. He blew me off and said they wait until school to deal with that. I wanted whatever it was to be under control by school.
When he was three and a half I married my husband. My mom was at my wedding and was in charge of watching Kyle. She feels that she missed my wedding. Kyle kept taking off, running outside of the reception hall, constantly. After having two more little ones, it is clear how severe this was. (I was thinking of this day recently because I was scanning some wedding pictures on the computer)
By the time Kyle was four, things weren't getting better. The terrible twos never left. At his annual checkup I refused to leave without being referred. We were referred to one psychologist who met with all of us and performed many tests on Kyle. He was then diagnosed with moderate to severe ADHD-HI and ODD. Finally, we knew what was going on and could go from there.
Behavioral therapy, family counseling and a trial of every ADHD medication offered little relief. Along the way we switched therapists. The place we go to now is great. Shortly after working with them with the ADHD and behavioral therapy, they asked me if anyone ever mentioned Asperger's to me. I had never heard of that term before. They went on to explain what it was, and it was if they were describing my child. They wanted him to be evaluated in depth to make sure that it wasn't just severe ADHD. He received the provisional diagnosis of Asperger's in first grade. A year and a half later he received the definitive diagnosis. When I discussed this with his first grade teacher (first grade was a very rough year for him) she said she had wondered if he was.
Now, we are finishing the last leg of third grade. We still have our hurdles, battles and sensory issues. Changes in routine, transitions, impulsivity, safety and social issues are the main things we have issues with. But, along with that, we have the support of the IEP, our knowledge and acceptance of his condition, and his classmates that are more accepting of him now that they know. He also has two therapists, the best I have ever met, that work with him one on one and in small social groups. He also participates in numerous extracurricular activities that help with his social growth and also keep him active. Boy does he have a lot of energy!
How do I keep sane? I'm one tough cookie! I am just thankful that I pushed along. Never doubt your gut instinct. I also have a five year old son and a four year old daughter that are neurotypical. They act "appropriately" like neurotypical kids are "supposed" to act. That, to me, confirms that I am not a bad parent. The higher power, known to most as God, gave Kyle to me because he knew that I would do the best for him. He knows that Kyle is in the best place. My kids are my world. I love each of them for who they are.
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