(This is a special entry for the blog today. Braden, age 10, is writing about Sean in honor of Take Your Child To Work Day)
I love my brother Sean. He is a brother that you can never replace, but sometimes we have our ups and down's.
I love living with Sean. He is a awesome brother. But sometimes we get into arguments, a lot of times about different things we don't agree on. Or if he wants me to do something when I'm busy or a lot of times, or it's the same way around when I want him to do something when he's busy.
A lot of times he is tired and cranky and he goes into a meltdown and then I have to go down to my grandma's room and sleep down there for the night. I hate seeing him like that, so sometimes when I get down there, I pray to God and say "God, please let Sean have not ADHD or Asperger's anymore!" I just hate seeing him like that.
When he gets Sophia it's mostly going to be Sean's dog, and Sean tells us he'll put the vest on her so we can't play with her. I keep telling him that she is a service dog when the vest is on, but when the vest is off it's the family dog.
The first time I saw Sophia I was like wow. she's beautiful! And when Sean went over to pet her, she was such a kisser she pushed Sean over and kissed him.
I really am looking forward for having Sophia as Sean's service dog. Once Sean and Sophia go into training then once they are done. She comes home there will be a big difference in this house hold.
Thanks for reading this and a big thank you to the people who donated money to The Sean & Sophia Foundation.
Sean's oldest brother,
Braden Forsyth.
Thursday, April 28, 2011
Tuesday, April 26, 2011
Walking On Eggshells
Some events of the weekend really started making me think. I don't think I walk on eggshells so much when it comes to Sean himself. Not much scares you there when you've been through multiple hours-long meldowns, dealing with red tape, and the occasional impulsive activity like trying to ride a ceiling fan (and yes, the piece of the fan Sean broke off trying to do just that is currently sitting upstairs in my bedroom.)
I think it's more that I walk on eggshells of the autism in general. Going to church on Easter Sunday, we decided to attend a non-denominational service where the kids could go into other rooms for church. I was fine with that, until I realized all three kids were getting split up into separate rooms. I instinctively found myself clinging to Sean and saying to the person directing us into the room "Sean has Asperger's. Should I talk to the people watching him?" I found myself not wanting to leave him at all, and when the service was over, Sean was the first kid I picked up.
I also notice that I hover at soccer practice, art class, and a lot of other places I take Sean. I sign him up for all of this, thinking I'm letting him be a normal kid, but am I really letting him do that after all? I always make sure everyone in charge knows his condition and make them promise to call immediately if Sean gets upset. Is that really necessary all the time?
I guess the ultimate answer I came up with is yes and no. Sean has a legitimate disability and people who deal with him should be warned. Think back to his poor occupational therapist who got things thrown at her when Sean first started there! But then again, he's not going to do that in every single new situation I put him in, especially if it's something he has an interest in. So maybe it's a good idea to mention Sean has a condition, but step back and just let things happen as they do. I think it's something I have to learn quickly, because Sean himself is starting to say "Mom, you're embarrassing me!"
Like any other kid, the trick is figuring out when to let go.
I think it's more that I walk on eggshells of the autism in general. Going to church on Easter Sunday, we decided to attend a non-denominational service where the kids could go into other rooms for church. I was fine with that, until I realized all three kids were getting split up into separate rooms. I instinctively found myself clinging to Sean and saying to the person directing us into the room "Sean has Asperger's. Should I talk to the people watching him?" I found myself not wanting to leave him at all, and when the service was over, Sean was the first kid I picked up.
I also notice that I hover at soccer practice, art class, and a lot of other places I take Sean. I sign him up for all of this, thinking I'm letting him be a normal kid, but am I really letting him do that after all? I always make sure everyone in charge knows his condition and make them promise to call immediately if Sean gets upset. Is that really necessary all the time?
I guess the ultimate answer I came up with is yes and no. Sean has a legitimate disability and people who deal with him should be warned. Think back to his poor occupational therapist who got things thrown at her when Sean first started there! But then again, he's not going to do that in every single new situation I put him in, especially if it's something he has an interest in. So maybe it's a good idea to mention Sean has a condition, but step back and just let things happen as they do. I think it's something I have to learn quickly, because Sean himself is starting to say "Mom, you're embarrassing me!"
Like any other kid, the trick is figuring out when to let go.
Sunday, April 24, 2011
My Son, the Someday Savant.
So Easter Weekend has ended. I must admit this weekend had me nervous with the potential to be really hairy(rain and being stuck indoors), but all three kids gave each other enough space most of the time to keep all parties chill.
In my working with Sean, I’ve really revised my approach to how I talk to him. Before having kids, my impression of being a parent is to be the authoritative Dad first and best friend second. It works great for my oldest son, but I needed to change my tactics a little to be the best Dad to Sean. If I had to define it, my style with Sean is an assertive personal assistant. That means I try my best to keep him informed of impending changes or the next scheduled event throughout the day or night. It seems to work, as changes from set expectations he has, are the where the hairiest situations occur.
When I'm trying to be his friend, that hasn’t changed much between the two boys. I pal around, offer encouragement, crack jokes, and always let him know I’m there to answer questions. As his friend, he’s amazing, and I think the help he’s getting shows. His classmates all had very nice things to say last week, when I attended his Spring Play. He gets many invitations to birthday parties, which I almost want to scream with joy for each one he brings home. It’s another victory.
My background is in communication, so while in “friend mode” I spend much time trying to get the most out of our conversations. In learning about Aspergers, one of the positives of having the diagnosis is the savant characteristic. Our BSC has asked if he’s shown much towards any topic, which may become his subject. I’ve been passionate about quite a few things, and my greatest successes came from things I have the great interest in, so I understand this.
I’ve read articles and excerpts from books written by Malcolm Gladwell. He’s the author of the 10,000 hour rule, and if you practice or work on anything for 10,000 hours, you become an expert on that subject. I can’t fault Malcolm’s reasoning, as he cites examples of The Beatles and others like scholars and athletes that mastered their crafts.
The notion intrigues me...
Could Jen and I direct Sean into a craft or study, that could make him world famous?
Could we align him to something today that would last him a lifetime, and give him the things he’ll need to survive on his own?
I pick his brain in our talks all the time. The only real interest he has right now is in trains, and maybe something great will become of that. He's only seven, I'll let him be a kids first. Nevertheless, I am hopeful for the opportunity to hear him really expand upon a subject, and help him achieve his dreams.
I also have web pages bookmarked, to get him magazines if he decides to go into nuclear physics and become this era's Albert Einstein (another suspected person with Aspergers). Can't hurt to hope. I know he's going to do great things!
Have a Great Week!
-B.J.
In my working with Sean, I’ve really revised my approach to how I talk to him. Before having kids, my impression of being a parent is to be the authoritative Dad first and best friend second. It works great for my oldest son, but I needed to change my tactics a little to be the best Dad to Sean. If I had to define it, my style with Sean is an assertive personal assistant. That means I try my best to keep him informed of impending changes or the next scheduled event throughout the day or night. It seems to work, as changes from set expectations he has, are the where the hairiest situations occur.
When I'm trying to be his friend, that hasn’t changed much between the two boys. I pal around, offer encouragement, crack jokes, and always let him know I’m there to answer questions. As his friend, he’s amazing, and I think the help he’s getting shows. His classmates all had very nice things to say last week, when I attended his Spring Play. He gets many invitations to birthday parties, which I almost want to scream with joy for each one he brings home. It’s another victory.
My background is in communication, so while in “friend mode” I spend much time trying to get the most out of our conversations. In learning about Aspergers, one of the positives of having the diagnosis is the savant characteristic. Our BSC has asked if he’s shown much towards any topic, which may become his subject. I’ve been passionate about quite a few things, and my greatest successes came from things I have the great interest in, so I understand this.
I’ve read articles and excerpts from books written by Malcolm Gladwell. He’s the author of the 10,000 hour rule, and if you practice or work on anything for 10,000 hours, you become an expert on that subject. I can’t fault Malcolm’s reasoning, as he cites examples of The Beatles and others like scholars and athletes that mastered their crafts.
The notion intrigues me...
Could Jen and I direct Sean into a craft or study, that could make him world famous?
Could we align him to something today that would last him a lifetime, and give him the things he’ll need to survive on his own?
I pick his brain in our talks all the time. The only real interest he has right now is in trains, and maybe something great will become of that. He's only seven, I'll let him be a kids first. Nevertheless, I am hopeful for the opportunity to hear him really expand upon a subject, and help him achieve his dreams.
I also have web pages bookmarked, to get him magazines if he decides to go into nuclear physics and become this era's Albert Einstein (another suspected person with Aspergers). Can't hurt to hope. I know he's going to do great things!
Have a Great Week!
-B.J.
Sunday, April 17, 2011
Home Evaluations Complete...Thank Goodness!
Sunday was our second and final home evaluation with Perfect Fit Canines. Again, we were asked to not give Sean his medicine until Jim and Susan were able to complete the evaluation. Sean was having a really good morning, so it actually wasn't that hard of a request to follow this day.
It was one of those great mornings you would just like to bottle as a parent. Emma slept over at my aunt's house the night before, so she wasn't here to wake everyone up at the crack of dawn. Braden was feeling horribly guilty for an incident the night before in which a book he threw met Sean's face (Sean has a lovely cut and black eye as a souvenir)so he woke up first, waited for Sean to wake up, took him downstairs, and got him breakfast. BJ and I got to sleep until 10am. Whoo hoo! I came downstairs and it was awesomely quiet, with Braden playing Angry Birds on his IPod and Sean playing Just Dance on the Wii. With a morning like that, anything seems possible.
So by the time Jim and Susan arrived, Emma was back and everyone was awake and happy. It actually got to the point where we had to think of things to provoke Sean so they could get the reactions recorded to show Sophia's trainer what to work on. I felt horribly guilty doing this. Who wants to purposely make their child upset? Especially a kid who, when he gets upset, is prone to massive fits and meltdowns. But we were somehow able to start a couple arguments with Sean, get a few desired reactions, and quickly calm him down. Thankfully all Jim and Susan needed was a little over an hour, and we were able to give Sean his meds and everything went back to normal.
So this is where we stand. The video of Sean goes back to Perfect Fit Canines and their trainer Jeff. He looks at the video as well as the other information Jim and Susan have collected from us and from evaluating Sean, and then he begins forming a plan on how to train Sophia, and from there, Sean and Sophia together. Susan will outline a plan with one or two things for Sean and Sophia to work on at a time, we pay a little bit of money towards Sophia at that point (that also covers the cost of the time and whatever else they need to train her for those particular tasks)sign off on everything, and then we begin. So hopefully we will be hearing from Jim, Susan, and Jeff as well soon, and training can officially begin!
It was one of those great mornings you would just like to bottle as a parent. Emma slept over at my aunt's house the night before, so she wasn't here to wake everyone up at the crack of dawn. Braden was feeling horribly guilty for an incident the night before in which a book he threw met Sean's face (Sean has a lovely cut and black eye as a souvenir)so he woke up first, waited for Sean to wake up, took him downstairs, and got him breakfast. BJ and I got to sleep until 10am. Whoo hoo! I came downstairs and it was awesomely quiet, with Braden playing Angry Birds on his IPod and Sean playing Just Dance on the Wii. With a morning like that, anything seems possible.
So by the time Jim and Susan arrived, Emma was back and everyone was awake and happy. It actually got to the point where we had to think of things to provoke Sean so they could get the reactions recorded to show Sophia's trainer what to work on. I felt horribly guilty doing this. Who wants to purposely make their child upset? Especially a kid who, when he gets upset, is prone to massive fits and meltdowns. But we were somehow able to start a couple arguments with Sean, get a few desired reactions, and quickly calm him down. Thankfully all Jim and Susan needed was a little over an hour, and we were able to give Sean his meds and everything went back to normal.
So this is where we stand. The video of Sean goes back to Perfect Fit Canines and their trainer Jeff. He looks at the video as well as the other information Jim and Susan have collected from us and from evaluating Sean, and then he begins forming a plan on how to train Sophia, and from there, Sean and Sophia together. Susan will outline a plan with one or two things for Sean and Sophia to work on at a time, we pay a little bit of money towards Sophia at that point (that also covers the cost of the time and whatever else they need to train her for those particular tasks)sign off on everything, and then we begin. So hopefully we will be hearing from Jim, Susan, and Jeff as well soon, and training can officially begin!
Wednesday, April 13, 2011
How Do You Silence The Critics?
The title of this blog is a question I have been trying to answer since Sunday, when a conversation over a couch turned very ugly.
My mother was on the phone with my uncle. She was asking him to take a couch that is currently being stored in our garage and move it to his house, where he has quite a bit more storage room. Our goal is to try and get the garage cleaned out and set up with toys for all three kids for the summer months. Somehow in the midst of my uncle agreeing to take the couch, the conversation turned to Sean.
My mom was telling my uncle about Sean's progress and therapy and we have been doing to raise funds for him and Sophia. Apparently my uncle wasn't too impressed.
He then got off on a rant and told my mother that there was nothing wrong with Sean. He doesn't have Asperger's or any other disability. He's fine, he just behaves badly and we don't control him. As far as the fundraising goes, apparently he thinks it's a scam, I'm just taking people's money, and nothing is going to come out of it.
I don't know which part of what he said upset me more...that nothing is wrong with Sean, or that he in essence called me a thief and a scam artist.
I wish I could say there was nothing wrong with Sean. I wish I could say he didn't have Asperger's. I wish Sean was a completely normal kid. Sean himself wishes all of that as well. We're not going around saying he has Asperger's because it's a cool thing to do or we want attention. We say it because he does in fact have it. The diagnosis has been confirmed by two psychologists and and endless amount of counselors and therapists who have worked directly with Sean. My uncle spends a few minutes around Sean a handful of times a year, and that's enough evidence in his mind to conclude all of us are wrong.
I want to make something clear to everyone: We choose to make Sean's story public not because we want attention for ourselves, sympathy, money, or anything else. We choose to make his story public to bring attention to the condition of Asperger's Syndrome. My uncle is living proof that this disorder is still very misunderstood, our old school district is proof that there is still not enough being done to help children with this disorder, and Sophia is hope that there are wonderful avenues of therapies out there that could help my little boy improve and lead as normal of a life as possible. This is why we go public with our journey, both our struggles and our triumphs. There isn't any huge reward in it for us. I don't plan on going Hollywood here. I just want the opportunity to help my own child, and others who need it as well.
It hurts when your own family doubts you and your efforts. How can someone related to you think such awful things? If I want to help Sean though I can't dwell on it. I take comfort in the fact that most of my family has been extremely supportive, and we have a legion of friends and even strangers that support us as well. That love definitely trumps the hate, and we will accomplish what we need to for Sean, no matter what anyone else thinks otherwise.
My mother was on the phone with my uncle. She was asking him to take a couch that is currently being stored in our garage and move it to his house, where he has quite a bit more storage room. Our goal is to try and get the garage cleaned out and set up with toys for all three kids for the summer months. Somehow in the midst of my uncle agreeing to take the couch, the conversation turned to Sean.
My mom was telling my uncle about Sean's progress and therapy and we have been doing to raise funds for him and Sophia. Apparently my uncle wasn't too impressed.
He then got off on a rant and told my mother that there was nothing wrong with Sean. He doesn't have Asperger's or any other disability. He's fine, he just behaves badly and we don't control him. As far as the fundraising goes, apparently he thinks it's a scam, I'm just taking people's money, and nothing is going to come out of it.
I don't know which part of what he said upset me more...that nothing is wrong with Sean, or that he in essence called me a thief and a scam artist.
I wish I could say there was nothing wrong with Sean. I wish I could say he didn't have Asperger's. I wish Sean was a completely normal kid. Sean himself wishes all of that as well. We're not going around saying he has Asperger's because it's a cool thing to do or we want attention. We say it because he does in fact have it. The diagnosis has been confirmed by two psychologists and and endless amount of counselors and therapists who have worked directly with Sean. My uncle spends a few minutes around Sean a handful of times a year, and that's enough evidence in his mind to conclude all of us are wrong.
I want to make something clear to everyone: We choose to make Sean's story public not because we want attention for ourselves, sympathy, money, or anything else. We choose to make his story public to bring attention to the condition of Asperger's Syndrome. My uncle is living proof that this disorder is still very misunderstood, our old school district is proof that there is still not enough being done to help children with this disorder, and Sophia is hope that there are wonderful avenues of therapies out there that could help my little boy improve and lead as normal of a life as possible. This is why we go public with our journey, both our struggles and our triumphs. There isn't any huge reward in it for us. I don't plan on going Hollywood here. I just want the opportunity to help my own child, and others who need it as well.
It hurts when your own family doubts you and your efforts. How can someone related to you think such awful things? If I want to help Sean though I can't dwell on it. I take comfort in the fact that most of my family has been extremely supportive, and we have a legion of friends and even strangers that support us as well. That love definitely trumps the hate, and we will accomplish what we need to for Sean, no matter what anyone else thinks otherwise.
Friday, April 8, 2011
New Can Be Scary...and Really Difficult!
It is has been a few days since the last blog, and I'm happy to say that's because we've been either busy or outside. Spring FINALLY seems to be breaking through here and there in Pittsburgh, and I cannot wait for the day it gets nice and stays that way for a few months!
One of the busy things I have been working on is an application for summer camp for Sean. His wonderful case manager Lisa has gotten him into a great camp for most of June and July that we think will really help him with his sensory and socialization skills. Plus he will be surrounded by kids that are just like him, so he will discover he's not alone in dealing with Asperger's.
This week Sean has also started heavily into occupational therapy, as well as a six-week art program at school. Soccer also starts next week as well. While all of this may sound fun and exciting to you or me, it has been anything but for Sean.
It's important to get Sean out and about and socialized, and into things that can either help him or that he can have fun with. But when you have a child with Asperger's, even if you know he will like the activity in the end, you have to be prepared for one heck of a fight until he gets used to it.
So far this week Sean has HATED occupational therapy and art class. While I was pretty impressed that the OT really set this up to be fun for Sean, and played to his likes of puzzles and arts in combination with the physical things he's not so good at, this is the response he gave us...
Not pretty, huh?
I don't expect the same reaction to soccer next week, but I am totally prepared for it.
It's funny, but as I was filling out the forms for summer camp, some of the questions asked what can be expected of Sean's behavior, and if they should anticipate any problems. How do I even begin to truthfully answer that without scaring the heck out of the counselors? Then again, in this line of work, maybe they are already expecting it, and they may deal with it a heck of a lot better than I do!
One of the busy things I have been working on is an application for summer camp for Sean. His wonderful case manager Lisa has gotten him into a great camp for most of June and July that we think will really help him with his sensory and socialization skills. Plus he will be surrounded by kids that are just like him, so he will discover he's not alone in dealing with Asperger's.
This week Sean has also started heavily into occupational therapy, as well as a six-week art program at school. Soccer also starts next week as well. While all of this may sound fun and exciting to you or me, it has been anything but for Sean.
It's important to get Sean out and about and socialized, and into things that can either help him or that he can have fun with. But when you have a child with Asperger's, even if you know he will like the activity in the end, you have to be prepared for one heck of a fight until he gets used to it.
So far this week Sean has HATED occupational therapy and art class. While I was pretty impressed that the OT really set this up to be fun for Sean, and played to his likes of puzzles and arts in combination with the physical things he's not so good at, this is the response he gave us...
Not pretty, huh?
I don't expect the same reaction to soccer next week, but I am totally prepared for it.
It's funny, but as I was filling out the forms for summer camp, some of the questions asked what can be expected of Sean's behavior, and if they should anticipate any problems. How do I even begin to truthfully answer that without scaring the heck out of the counselors? Then again, in this line of work, maybe they are already expecting it, and they may deal with it a heck of a lot better than I do!
Monday, April 4, 2011
One Step Closer!
So Sean's evaluation for Perfect Fit Canines was yesterday. It was a rough start, but the day ended fantastic.
In order to get an idea of how severe Sean's autism is and his level of agitation, Sean had to go half of the day without his medicines. Not sure who that was rougher on, Sean or the rest of us! At around 1pm Jim stopped over and got to see Sean in action up close and personal. Sean was extremely hyper, but manageable. Trust me, I've seen him a lot worse. He did give Jim enough material though, and with BJ, my mom, and I filling in the rest of the blanks, gave him a good idea of what he was dealing with and what behaviors Sophia would need to be trained to help with. This is the one thing I truly love about Perfect Fit Canines. I know Jim, Susan, and Jeff are going to make sure both Sophia and Sean are trained and ready before she comes to us. I am an admitted cat person, and have almost no experience training dogs, so that's a huge relief to me that Sophia will come to us with all of the basics learned.
After Sean had a semi-meltdown when Jim asked him to clean up his trains, he was finally allowed his Adderall...and a visit to Misty Pines Dog Park to visit Sophia! The whole family (minus Emma, who was with my aunt for the afternoon) plus our current dog of the house Odie, all packed in the car and headed over.
BJ and my mom had not met Sophia until yesterday, and I think one look at her and they were both in love. She is simply just a sweet dog. She's a kisser. Every time she greets someone she licks the daylights out of their hands. And she just ran from person to person saying hello...before running back and taking her place at Sean's side.
That was the amazing thing as we took Sophia down to one of the agility areas and played with her. No matter where she ran, within a minute or two she ran back to Sean. They've only been together about three times, and it's like she already knows she is going to be taking care of him. I was astounded. It was a great end to the afternoon. The whole family got to hang out with Sophia, Odie was introduced to her and that went well, and to watch Sean play with her was so cool. They are going to be really great together!
We also handed Perfect Fit Canines and $1800 check for the down payment on Sophia, so she is officially reserved for Sean now! None of that would be possible without all of the help and support we have received from all of you. Our family has been extremely blessed to have such supportive family and friends.
Our journey now moves to the next phase. Jim will soon be sending us a schedule, and the fun visits with Sophia are now over. Now whenever Sean sees her, it's for work. Both will soon begin an intensive training program so they learn how to work together. The process is expected to take at least ten months. We also found out Sean won't be able to bring Sophia home, even after training is complete, until she is paid for in full. Jim told us the costs could end up being around $15,000.
With that in mind, and the fact that I was informed today that I did not get the job I was applying for with the Pittsburgh Public Schools, this has officially become my new career. The Sean & Sophia Foundation will be raising funds for Sean and Sophia, but will soon be turning into a nonprofit as well. We feel since everyone has been so supportive in helping Sean that we are obligated to pay that love forward, and our mission will be to help provide funding to obtain service dogs or any other equipment for those with special needs that may otherwise be financially out of reach. So I guess I got a new job today after all!
In order to get an idea of how severe Sean's autism is and his level of agitation, Sean had to go half of the day without his medicines. Not sure who that was rougher on, Sean or the rest of us! At around 1pm Jim stopped over and got to see Sean in action up close and personal. Sean was extremely hyper, but manageable. Trust me, I've seen him a lot worse. He did give Jim enough material though, and with BJ, my mom, and I filling in the rest of the blanks, gave him a good idea of what he was dealing with and what behaviors Sophia would need to be trained to help with. This is the one thing I truly love about Perfect Fit Canines. I know Jim, Susan, and Jeff are going to make sure both Sophia and Sean are trained and ready before she comes to us. I am an admitted cat person, and have almost no experience training dogs, so that's a huge relief to me that Sophia will come to us with all of the basics learned.
After Sean had a semi-meltdown when Jim asked him to clean up his trains, he was finally allowed his Adderall...and a visit to Misty Pines Dog Park to visit Sophia! The whole family (minus Emma, who was with my aunt for the afternoon) plus our current dog of the house Odie, all packed in the car and headed over.
BJ and my mom had not met Sophia until yesterday, and I think one look at her and they were both in love. She is simply just a sweet dog. She's a kisser. Every time she greets someone she licks the daylights out of their hands. And she just ran from person to person saying hello...before running back and taking her place at Sean's side.
That was the amazing thing as we took Sophia down to one of the agility areas and played with her. No matter where she ran, within a minute or two she ran back to Sean. They've only been together about three times, and it's like she already knows she is going to be taking care of him. I was astounded. It was a great end to the afternoon. The whole family got to hang out with Sophia, Odie was introduced to her and that went well, and to watch Sean play with her was so cool. They are going to be really great together!
We also handed Perfect Fit Canines and $1800 check for the down payment on Sophia, so she is officially reserved for Sean now! None of that would be possible without all of the help and support we have received from all of you. Our family has been extremely blessed to have such supportive family and friends.
Our journey now moves to the next phase. Jim will soon be sending us a schedule, and the fun visits with Sophia are now over. Now whenever Sean sees her, it's for work. Both will soon begin an intensive training program so they learn how to work together. The process is expected to take at least ten months. We also found out Sean won't be able to bring Sophia home, even after training is complete, until she is paid for in full. Jim told us the costs could end up being around $15,000.
With that in mind, and the fact that I was informed today that I did not get the job I was applying for with the Pittsburgh Public Schools, this has officially become my new career. The Sean & Sophia Foundation will be raising funds for Sean and Sophia, but will soon be turning into a nonprofit as well. We feel since everyone has been so supportive in helping Sean that we are obligated to pay that love forward, and our mission will be to help provide funding to obtain service dogs or any other equipment for those with special needs that may otherwise be financially out of reach. So I guess I got a new job today after all!
Saturday, April 2, 2011
Whatever It Is, It's Working!
Two nights ago, Wexford Elementary held their spring open house. This is the school Sean is now a first grader at. Before I go any further though about the night, I feel like I should give you some background as how we got to here in the first place...
We just brought our family to Wexford in October. For nearly five years before that we owned a cute little house on a corner lot in Brentwood. It was a tiny little house, but it had a great fenced-in backyard, you could walk to everything, and it had what we thought it was a great school district. In all honesty Brentwood Borough School District is a very good school district....unless you have a child with special needs.
We had no complaints at all sending Braden to Elroy Elementary in Brentwood for kindergarten, first, and second grade. Then two things happened before the next school year began, when Braden was sent to enter third grade and Sean was set to enter kindergarten.
First, the family of Braden's best friend suddenly pulled him out of Elroy and put him in a charter school in a neighboring school district. The child was prone to seizures and had learning disabilities as a result, but the mother seemed very hesitant to say anything bad about Elroy when every other child on the street was still going there. You could tell though, she had a lot to say on the subject if she would allow herself to. And every administrator in Brentwood may have turned to dust if she would have let loose!
The second thing that happened was a mid-summer call I received from the principal of Elroy Elementary. I had made the district aware that we knew there were issues with Sean's behavior, and at the time we at least had a diagnosis of ADHD, so I figured I should get the process on any IEP or special education plans moving early. No such luck.
The principal told me straight out that Brentwood Borough School District does not provide any special education services to children with ADHD. They are just a part of the regular curriculum. I thought it was strange, but figured there was nothing I could do.
Fast forward to the actual school year. Phone calls and e-mails started coming home from the principal, Sean's teacher, even the school social worker. His behavior was disruptive, he was a nightmare to deal with in the classroom, he was getting school demerits. But even then, no help or solutions were offered. Not long after that I found out Sean was getting bullied by the other kids in class...IN KINDERGARTEN! The school didn't tell me though, I found out because Sean was so upset in class he started making himself throw up every day just so he could come home. That's when I forced the wraparound care into his classroom.
The first BSC and TSS didn't succeed in keeping Sean in line at school, but at least they kept the bullies away. When I switched to Alliance Health Wraparound though, got the Asperger's diagnosis, and brought more experienced people into the classroom, the problems suddenly stopped. Elroy was suddenly dealing with a Sean who cooperated during class and excelled academically. Things went pretty smoothly for the rest of the school year...well, except for that one instance where Sean had one bad day, had a meltdown, and the school threatened to call the cops on him. Yes, you read that correctly, they wanted to call the police on a kindergarten child having a tantrum!
I thought for sure with the Asperger's diagnosis, and the improvement the school saw when good help was in place, that Brentwood would give us an IEP for sure the next school year. After all, it's state law that special education be provided to children on the Autism spectrum, right?
Yeah, that didn't happen.
We had a meeting over the summer with the district, the principal of the school, and Sean's counselors. Long story short, school officials told us that since Sean didn't meet the district's criteria of special education, that they could circumvent the state law and not give Sean any help. We were also told they did not want a BSC or TSS in the school to help Sean, and that they would not provide an aide either. Their acutal words to BJ and I were that they wanted to "let him go by himself, and if we feel he gets bad enough in class, then we might do something about it." We reported back to the agencies in charge of Sean's care. They already knew our house was on the market in case we didn't get the district to help us, and they told us to get Sean out of that school as soon as possible. The next day, I registered both Braden and Sean for the 2010-11 school year in Pine Richland School District.
We found a place to rent and moved here October 1st, which means for the first five weeks of the school year, Braden and Sean were driven to school and back every day, a total of 4 hours in the car Monday-Friday. Many of Emma's naps were cut short, my car was filled with snacks, and my gasoline expenses were outrageous, but after what I heard this past Wednesday evening, it was all worth it...
The second Sean set foot in the district, the special education and psych teams were on the case evaluating him. He not only had an IEP by the end of September, but a behavioral plan and occupational therapy plan in place as well. He was also put on a "sensory diet," meaning they figured out what times in the day Sean gets agitated and what kinds of things set him off, and they made him take breaks, pulled him out of class, and did whatever they had to do to keep him calm and happy the entire school day. His classmates rallied around him, and now he proudly tells us that all 24 kids are his best friends.
Back to present day! Sean happily took me from room to room at Wexford Elementary, where he is now a happy first grader. We met his music teacher, his art teacher, his computer teacher, said hello to his homeroom teacher, who I am now on a friendly first-name basis with, and the paraprofessional in charge of Sean the most during the day. Every last one pulled me aside to tell me how much Sean has improved since the beginning of the school year, how intelligent he is, and what a joy he is to have in the school. They truly adore Sean, and were so happy he was thriving in every aspect of school.
I never used to be much of a cryer, but I find myself with tears in my eyes a lot lately. Between all of our fundraising efforts to help Sean get Sophia, and the awesome progress Sean has made in school, I'm a happy mess. Not sure what exactly in our many facets of efforts is helping Sean the most, but whatever it is, it's working!!!
We just brought our family to Wexford in October. For nearly five years before that we owned a cute little house on a corner lot in Brentwood. It was a tiny little house, but it had a great fenced-in backyard, you could walk to everything, and it had what we thought it was a great school district. In all honesty Brentwood Borough School District is a very good school district....unless you have a child with special needs.
We had no complaints at all sending Braden to Elroy Elementary in Brentwood for kindergarten, first, and second grade. Then two things happened before the next school year began, when Braden was sent to enter third grade and Sean was set to enter kindergarten.
First, the family of Braden's best friend suddenly pulled him out of Elroy and put him in a charter school in a neighboring school district. The child was prone to seizures and had learning disabilities as a result, but the mother seemed very hesitant to say anything bad about Elroy when every other child on the street was still going there. You could tell though, she had a lot to say on the subject if she would allow herself to. And every administrator in Brentwood may have turned to dust if she would have let loose!
The second thing that happened was a mid-summer call I received from the principal of Elroy Elementary. I had made the district aware that we knew there were issues with Sean's behavior, and at the time we at least had a diagnosis of ADHD, so I figured I should get the process on any IEP or special education plans moving early. No such luck.
The principal told me straight out that Brentwood Borough School District does not provide any special education services to children with ADHD. They are just a part of the regular curriculum. I thought it was strange, but figured there was nothing I could do.
Fast forward to the actual school year. Phone calls and e-mails started coming home from the principal, Sean's teacher, even the school social worker. His behavior was disruptive, he was a nightmare to deal with in the classroom, he was getting school demerits. But even then, no help or solutions were offered. Not long after that I found out Sean was getting bullied by the other kids in class...IN KINDERGARTEN! The school didn't tell me though, I found out because Sean was so upset in class he started making himself throw up every day just so he could come home. That's when I forced the wraparound care into his classroom.
The first BSC and TSS didn't succeed in keeping Sean in line at school, but at least they kept the bullies away. When I switched to Alliance Health Wraparound though, got the Asperger's diagnosis, and brought more experienced people into the classroom, the problems suddenly stopped. Elroy was suddenly dealing with a Sean who cooperated during class and excelled academically. Things went pretty smoothly for the rest of the school year...well, except for that one instance where Sean had one bad day, had a meltdown, and the school threatened to call the cops on him. Yes, you read that correctly, they wanted to call the police on a kindergarten child having a tantrum!
I thought for sure with the Asperger's diagnosis, and the improvement the school saw when good help was in place, that Brentwood would give us an IEP for sure the next school year. After all, it's state law that special education be provided to children on the Autism spectrum, right?
Yeah, that didn't happen.
We had a meeting over the summer with the district, the principal of the school, and Sean's counselors. Long story short, school officials told us that since Sean didn't meet the district's criteria of special education, that they could circumvent the state law and not give Sean any help. We were also told they did not want a BSC or TSS in the school to help Sean, and that they would not provide an aide either. Their acutal words to BJ and I were that they wanted to "let him go by himself, and if we feel he gets bad enough in class, then we might do something about it." We reported back to the agencies in charge of Sean's care. They already knew our house was on the market in case we didn't get the district to help us, and they told us to get Sean out of that school as soon as possible. The next day, I registered both Braden and Sean for the 2010-11 school year in Pine Richland School District.
We found a place to rent and moved here October 1st, which means for the first five weeks of the school year, Braden and Sean were driven to school and back every day, a total of 4 hours in the car Monday-Friday. Many of Emma's naps were cut short, my car was filled with snacks, and my gasoline expenses were outrageous, but after what I heard this past Wednesday evening, it was all worth it...
The second Sean set foot in the district, the special education and psych teams were on the case evaluating him. He not only had an IEP by the end of September, but a behavioral plan and occupational therapy plan in place as well. He was also put on a "sensory diet," meaning they figured out what times in the day Sean gets agitated and what kinds of things set him off, and they made him take breaks, pulled him out of class, and did whatever they had to do to keep him calm and happy the entire school day. His classmates rallied around him, and now he proudly tells us that all 24 kids are his best friends.
Back to present day! Sean happily took me from room to room at Wexford Elementary, where he is now a happy first grader. We met his music teacher, his art teacher, his computer teacher, said hello to his homeroom teacher, who I am now on a friendly first-name basis with, and the paraprofessional in charge of Sean the most during the day. Every last one pulled me aside to tell me how much Sean has improved since the beginning of the school year, how intelligent he is, and what a joy he is to have in the school. They truly adore Sean, and were so happy he was thriving in every aspect of school.
I never used to be much of a cryer, but I find myself with tears in my eyes a lot lately. Between all of our fundraising efforts to help Sean get Sophia, and the awesome progress Sean has made in school, I'm a happy mess. Not sure what exactly in our many facets of efforts is helping Sean the most, but whatever it is, it's working!!!
Thursday, March 31, 2011
Interview With Sean
It took a day longer than expected, as Sean was pretty hyper and agitated from occupational therapy and open house at his school last night. So we waited 24 hours, and we got an interview with a totally different kid. This time, Sean was happy to answer questions, and in the following two videos, he does that, and thanks everyone who is helping him.
If you have trouble viewing the interview on this page, just double-click on the video, and it will take you to YouTube, where it should work just fine. Enjoy!
Part I
Part II
If you have trouble viewing the interview on this page, just double-click on the video, and it will take you to YouTube, where it should work just fine. Enjoy!
Part I
Part II
Wednesday, March 30, 2011
Asperger's In Action in OT
Our followers are going to get treated to an extra blog entry today. We have a netbook on loan from BJs' job for the next few weeks, and I was able to get a signal in the office we are currently at. I figured Sean's first encounter with Occupational Therapy was a blog-worthy event.
We are about 30 minutes into the first session, and it's not going well at all. This is surprising because usually when Sean meets a new person for the first time, even a therapist, he's sweeter than anything. he really turns the charm on and makes the person think there is absolutely nothing wrong with him. Lately that is even developing into a defense mechanism for him. He tries to be funny to the point of class clown, and act as normal as possible, because he doesn't want anyone knowing he has Asperger's.
That's not happening today though, and I'm really starting to feel sorry for his poor therapist. She seems like such a sweet girl, and Sean is really giving her a run for her money. He liked the swinging and jumping exercises at first, but as soon as she moved onto other things, Sean got agitated. So far he has called her and the session stupid, dumb, boring, and a bunch of other things I couldn't even identify as words. He bristled at touching shaving cream, and at the moment is refusing to show how he buttons and zippers clothing. All he wants to do is go back on the tire swing, the first activity she did with him.
This is the obsessive and fixated part of Asperger's. No other activity this therapist does is going to be good enough. He wants that tire swing and only that tire swing, and he's going to make this poor girl's life a living hell until he gets it. He is slacking through the list of evaluative activities or refusing to do them altogether, because he wants that swing. He has also gotten to the point of breaking the pencil during a writing exercise and throwing things at the therapist to prove his point. One look at him right now and you would think I never taught the kid how to behave in public.
But I know with the way he is refusing eye contact, and speaking at times almost incoherently, he is really agitated, and things are beyond his control. The only thing on his mind right now is that swing. Right now he is refusing to write letters to the point he has thrown his chair across the room and flopped to the floor. Thank goodness the TSS counselor will come here with us next week!
Off to help this poor girl before Sean gives her a concussion!
We are about 30 minutes into the first session, and it's not going well at all. This is surprising because usually when Sean meets a new person for the first time, even a therapist, he's sweeter than anything. he really turns the charm on and makes the person think there is absolutely nothing wrong with him. Lately that is even developing into a defense mechanism for him. He tries to be funny to the point of class clown, and act as normal as possible, because he doesn't want anyone knowing he has Asperger's.
That's not happening today though, and I'm really starting to feel sorry for his poor therapist. She seems like such a sweet girl, and Sean is really giving her a run for her money. He liked the swinging and jumping exercises at first, but as soon as she moved onto other things, Sean got agitated. So far he has called her and the session stupid, dumb, boring, and a bunch of other things I couldn't even identify as words. He bristled at touching shaving cream, and at the moment is refusing to show how he buttons and zippers clothing. All he wants to do is go back on the tire swing, the first activity she did with him.
This is the obsessive and fixated part of Asperger's. No other activity this therapist does is going to be good enough. He wants that tire swing and only that tire swing, and he's going to make this poor girl's life a living hell until he gets it. He is slacking through the list of evaluative activities or refusing to do them altogether, because he wants that swing. He has also gotten to the point of breaking the pencil during a writing exercise and throwing things at the therapist to prove his point. One look at him right now and you would think I never taught the kid how to behave in public.
But I know with the way he is refusing eye contact, and speaking at times almost incoherently, he is really agitated, and things are beyond his control. The only thing on his mind right now is that swing. Right now he is refusing to write letters to the point he has thrown his chair across the room and flopped to the floor. Thank goodness the TSS counselor will come here with us next week!
Off to help this poor girl before Sean gives her a concussion!
Tuesday, March 29, 2011
Q&A - Part 1
While trying to come up with a topic for today's blog, I decided to ask the Facebook world for their opinion. What questions did they want answered about Sean or his condition?
I decided it would actually be better if I answered over two nights in two different ways; tonight you will hear my answers, and tomorrow, if I can upload the video properly, you will head answers from Sean himself. We will do my part tonight since Sean is already in bed. LOL!
What were some of the first signs you noticed that made you realize something wasn't right, and what age was he?
I think we noticed signs a long time before we actually sought help, but we never imagined there was anything seriously wrong.
Sean was always a challenge, but when he was born it was more the physical health issues that consumed us. He was fussy almost as soon as we brought him home. He had reflux and colic. He didn't sleep. At 4 months he developed RSV, and ended up in the ER after not being able to breathe. The RSV damaged his lungs, and he developed asthma. At 6 months the ear infections started, and he had ear tubes put in at 10 months. For his whole first year, Sean was constantly sick. That continued until about age 3, when we had his tonsils and adnoids removed. Suddenly, he went from being sick every few weeks to hardly at all. Not sure if the surgery was a coincidence or not, but he's been a very healthy kid for the past 4 years.
We did, however, start to notice odd behaviors at around 18 months. He was just very hard to control. He didn't seem to listen at all, and when we tried to talk to him about things, it was like he was looking right past us instead of listening to us. He took off on his own a lot. We lived on a dead-end street when Sean was a toddler, and he would slip past 5 or 6 mothers on the street and disappear. We would find him just off by himself playing in someone's backyard or even in their house. His tantrums seemed more extreme than other children's, and we just couldn't get him to behave!
Preschool started reporting problems at age 5. He couldn't sit still, he couldn't follow directions, and he couldn't pay attention. His cognitive skills were terrible. Then, the impulsive behavior started at home. He would toss a bag of popcorn in the microwave, hit a bunch of numbers, and just walk away. He almost burned down the house one night.
Another incident that was scary was when Sean was in the bathroom at our old house. He heard someone outside and wanted to see who it was. He opened not only the window, but the screen, and the next thing we knew he was hanging out of a 2nd story window! When we asked him why he did it, he kept saying over and over that he didn't know. And we realized he really didn't know, and he couldn't control it.
What is calming for Sean? What is an agitator?
Most of what agitates Sean, and also what calms him down, is sensory-related. Many times when we have playdates at the house, Sean stays upstairs and plays in his room because the chaos of having so many people in the house upsets him. He actually goes upstairs on his own at this point when he knows people are coming over. Loud noises, crowds, and stressful situations can set off a meltdown. And, so can being told "no." If you think your kid screams when you tell him or her no, try experiencing the reaction of a child with Asperger's who already had a scenario developed in his head that revolved around you saying yes and going along with his plans. Hearing no can make things really ugly around here.
Another thing that agitates Sean is any changes or disruption in routine. If you make him eat before he gets dressed in the morning he gets angry. In his mind he needs to eat first and then get dressed. If BJ or I don't read him his 10-20 pages of DIary of a Wimpy Kid before he goes to bed, he's not going to sleep. You also have to be careful about telling him plans in advance. If things fall through and he was looking forward to a certain event, a meltdown will follow. He doesn't care if the car breaks down, if his brother or sister get sick, or the event in question is canceled. Routine is extremely important for a child with autism.
What makes him better? Touch and creativity. The main reason we gave up everything and moved to Wexford was for Pine Richland School District, and more specifically, Wexford Elementary. Working with them, we have learned calming an upset Sean can be as simple as hugging or holding him. When he first started at Wexford and would get upset, the paraprofessionals would wrap him in a blanket and rock him, and as silly as that sounds to do to a 7-year-old in school, the closeness calms him down. I usually try to immediately reach out and hug him when I see him starting to get agitated. It can really help ward off bad things from happening.
Another thing that calms Sean is art. The staff at Wexford Elementary has pretty much figured out what times and situation agitate Sean during the school day, so his "sensory diet" includes 3-4 breaks per day either in the sensory room or in his main paraprofessional's classroom. There he takes boxes, papers, and other little things we would consider garbage, and he creates art projects. He usually comes off the school bus at the end of the day with a bag filled of creations. There are too many to keep in the house, so I now plan on taking pictures of his creations, and then turning them into book for him. So even if we can't keep them or if they break, he still has that image to keep for as long as he wants.
I know that there are many trials you go through with Sean, but what would you say is the one thing about Sean's disorder that makes him a BETTER person?
I asked BJ to answer this question. And in his opinion, it's when he gets something, he REALLY gets it. He has a photographic memory, and even when you think he's not paying attention, he's absorbing everything you're saying or doing. He does it better than any "normal" kid out there. Once he gets an interest or a hobby that's it. He's knows everything about it and excels. And to see his face light up when he gets something he previously struggled with, like when he finally rode his bike, you can't help but celebrate right along with him. It's pure innocence and joy. With Sean there is no hidden agenda or sneakiness. With his condition he's blunt as can be, so when you see the joy on his face when he finds an interest, or gets something he had trouble with, no high can ever match it. This is why yelling or criticizing Sean never works. You encourage, even when you want to yell or give up. Because when he gets something, it sticks permanently.
Tomorrow night, technology permitting...it's Sean's turn to answer questions!
I decided it would actually be better if I answered over two nights in two different ways; tonight you will hear my answers, and tomorrow, if I can upload the video properly, you will head answers from Sean himself. We will do my part tonight since Sean is already in bed. LOL!
What were some of the first signs you noticed that made you realize something wasn't right, and what age was he?
I think we noticed signs a long time before we actually sought help, but we never imagined there was anything seriously wrong.
Sean was always a challenge, but when he was born it was more the physical health issues that consumed us. He was fussy almost as soon as we brought him home. He had reflux and colic. He didn't sleep. At 4 months he developed RSV, and ended up in the ER after not being able to breathe. The RSV damaged his lungs, and he developed asthma. At 6 months the ear infections started, and he had ear tubes put in at 10 months. For his whole first year, Sean was constantly sick. That continued until about age 3, when we had his tonsils and adnoids removed. Suddenly, he went from being sick every few weeks to hardly at all. Not sure if the surgery was a coincidence or not, but he's been a very healthy kid for the past 4 years.
We did, however, start to notice odd behaviors at around 18 months. He was just very hard to control. He didn't seem to listen at all, and when we tried to talk to him about things, it was like he was looking right past us instead of listening to us. He took off on his own a lot. We lived on a dead-end street when Sean was a toddler, and he would slip past 5 or 6 mothers on the street and disappear. We would find him just off by himself playing in someone's backyard or even in their house. His tantrums seemed more extreme than other children's, and we just couldn't get him to behave!
Preschool started reporting problems at age 5. He couldn't sit still, he couldn't follow directions, and he couldn't pay attention. His cognitive skills were terrible. Then, the impulsive behavior started at home. He would toss a bag of popcorn in the microwave, hit a bunch of numbers, and just walk away. He almost burned down the house one night.
Another incident that was scary was when Sean was in the bathroom at our old house. He heard someone outside and wanted to see who it was. He opened not only the window, but the screen, and the next thing we knew he was hanging out of a 2nd story window! When we asked him why he did it, he kept saying over and over that he didn't know. And we realized he really didn't know, and he couldn't control it.
What is calming for Sean? What is an agitator?
Most of what agitates Sean, and also what calms him down, is sensory-related. Many times when we have playdates at the house, Sean stays upstairs and plays in his room because the chaos of having so many people in the house upsets him. He actually goes upstairs on his own at this point when he knows people are coming over. Loud noises, crowds, and stressful situations can set off a meltdown. And, so can being told "no." If you think your kid screams when you tell him or her no, try experiencing the reaction of a child with Asperger's who already had a scenario developed in his head that revolved around you saying yes and going along with his plans. Hearing no can make things really ugly around here.
Another thing that agitates Sean is any changes or disruption in routine. If you make him eat before he gets dressed in the morning he gets angry. In his mind he needs to eat first and then get dressed. If BJ or I don't read him his 10-20 pages of DIary of a Wimpy Kid before he goes to bed, he's not going to sleep. You also have to be careful about telling him plans in advance. If things fall through and he was looking forward to a certain event, a meltdown will follow. He doesn't care if the car breaks down, if his brother or sister get sick, or the event in question is canceled. Routine is extremely important for a child with autism.
What makes him better? Touch and creativity. The main reason we gave up everything and moved to Wexford was for Pine Richland School District, and more specifically, Wexford Elementary. Working with them, we have learned calming an upset Sean can be as simple as hugging or holding him. When he first started at Wexford and would get upset, the paraprofessionals would wrap him in a blanket and rock him, and as silly as that sounds to do to a 7-year-old in school, the closeness calms him down. I usually try to immediately reach out and hug him when I see him starting to get agitated. It can really help ward off bad things from happening.
Another thing that calms Sean is art. The staff at Wexford Elementary has pretty much figured out what times and situation agitate Sean during the school day, so his "sensory diet" includes 3-4 breaks per day either in the sensory room or in his main paraprofessional's classroom. There he takes boxes, papers, and other little things we would consider garbage, and he creates art projects. He usually comes off the school bus at the end of the day with a bag filled of creations. There are too many to keep in the house, so I now plan on taking pictures of his creations, and then turning them into book for him. So even if we can't keep them or if they break, he still has that image to keep for as long as he wants.
I know that there are many trials you go through with Sean, but what would you say is the one thing about Sean's disorder that makes him a BETTER person?
I asked BJ to answer this question. And in his opinion, it's when he gets something, he REALLY gets it. He has a photographic memory, and even when you think he's not paying attention, he's absorbing everything you're saying or doing. He does it better than any "normal" kid out there. Once he gets an interest or a hobby that's it. He's knows everything about it and excels. And to see his face light up when he gets something he previously struggled with, like when he finally rode his bike, you can't help but celebrate right along with him. It's pure innocence and joy. With Sean there is no hidden agenda or sneakiness. With his condition he's blunt as can be, so when you see the joy on his face when he finds an interest, or gets something he had trouble with, no high can ever match it. This is why yelling or criticizing Sean never works. You encourage, even when you want to yell or give up. Because when he gets something, it sticks permanently.
Tomorrow night, technology permitting...it's Sean's turn to answer questions!
Sunday, March 27, 2011
Asperger's in a Movie
In getting to learn about my son Sean and Aspergers, a good point of reference has been a show on NBC called Parenthood. One character, a 10 year old named Max, is dealing with many of the same issues we see in Sean. The amazing fact is the kid who plays Max does not have it, meaning he had to learn how to get into that character. The research and help he must have been given to prepare! That fortifies the fact that the characteristics Max portrays with Aspergers, and what I see with Sean, mean it isn't some diagnosis made up as an excuse for kids. I've seen people say that when Autism awareness was coming to the light, even members of my own family.
A few weeks back, I came across a movie late one night when I couldn't sleep. I read the summary which mentioned Aspergers and decided to watch a little of it. Unfortunately I was so tired I only watched the first 25 minutes and fell deep asleep. I also forgot the name of the movie!
From what I remembered, the movie was about the lead character, who was in his late 20s, diagnosed with Aspergers, and had recently lost his parents. The man was living alone in an apartment, and had lost the support of his folks in his daily life. Without that support, he was learning to do for himself. Other characters in the film were an older black guy that was a friend of the man's late father, and a young lady who had just moved into the apartment building. The young man with Aspergers worked at a technology company, and had a passion for astronomy. I also remember the first meeting between the lead and young lady, where she begins to inquire and ask questions about him. As someone with Aspergers will do(and I've experienced with Sean), he changes subject and opens up with the thing he's most passionate about. This strange meeting seemed odd to the lady, but because she was reaching out, she continued to find ways to communicate with the man.
Within the movie's plot of the guy and girl, you start to see the progression of someone with Aspergers without help. A freezer that is filled with is favorite frozen dinner quickly begins to dwindle in numbers, because no one is re-stocking the groceries. He also resorts to doing his laundry in the basement of his building wearing a suit because he has run out of clean clothes.
It's things I could see happening to Sean if (God forbid) he lost his support. It really worried me. And without a way to find out more about what I saw, I wondered if I would ever see the rest of this film?
God answers prayers, because as I've been concerned about Sean's recent behaviors, we've recently seen some good. I woke up this morning to take my oldest to his hockey game, and as I usually do I turned on the TV. Out of curiosity I flipped the TV guide over to the HBO channels, and I came across a movie name of "Adam." It sounded familiar. As I scrambled to get more info, it turned out to be the movie I had fallen asleep watching a few weeks back!
At the point of the movie where I found it, there was only 30 minutes left. I committed to watch how it ended, and although I don't want to spoil anything, I must say I feel much better Adam is a man who is involved with many changes. Aspergers can make change similar to playing with a flamethrower in a gunpowder factory. If we can help Sean deal with change, and if it's true how a grown adult like Adam was able to learn to accept and somewhat embrace change, I have a tremendous amount of hope for my boy.
The movie has won a few awards since it's release in 2009. My DirecTV doesn't show it re-airing anytime soon, but I'll keep an eye out for it, and make sure Adam is on the DVR for Jen to see.
I cannot wait to see the parts I've missed!
-BJ
A few weeks back, I came across a movie late one night when I couldn't sleep. I read the summary which mentioned Aspergers and decided to watch a little of it. Unfortunately I was so tired I only watched the first 25 minutes and fell deep asleep. I also forgot the name of the movie!
From what I remembered, the movie was about the lead character, who was in his late 20s, diagnosed with Aspergers, and had recently lost his parents. The man was living alone in an apartment, and had lost the support of his folks in his daily life. Without that support, he was learning to do for himself. Other characters in the film were an older black guy that was a friend of the man's late father, and a young lady who had just moved into the apartment building. The young man with Aspergers worked at a technology company, and had a passion for astronomy. I also remember the first meeting between the lead and young lady, where she begins to inquire and ask questions about him. As someone with Aspergers will do(and I've experienced with Sean), he changes subject and opens up with the thing he's most passionate about. This strange meeting seemed odd to the lady, but because she was reaching out, she continued to find ways to communicate with the man.
Within the movie's plot of the guy and girl, you start to see the progression of someone with Aspergers without help. A freezer that is filled with is favorite frozen dinner quickly begins to dwindle in numbers, because no one is re-stocking the groceries. He also resorts to doing his laundry in the basement of his building wearing a suit because he has run out of clean clothes.
It's things I could see happening to Sean if (God forbid) he lost his support. It really worried me. And without a way to find out more about what I saw, I wondered if I would ever see the rest of this film?
God answers prayers, because as I've been concerned about Sean's recent behaviors, we've recently seen some good. I woke up this morning to take my oldest to his hockey game, and as I usually do I turned on the TV. Out of curiosity I flipped the TV guide over to the HBO channels, and I came across a movie name of "Adam." It sounded familiar. As I scrambled to get more info, it turned out to be the movie I had fallen asleep watching a few weeks back!
At the point of the movie where I found it, there was only 30 minutes left. I committed to watch how it ended, and although I don't want to spoil anything, I must say I feel much better Adam is a man who is involved with many changes. Aspergers can make change similar to playing with a flamethrower in a gunpowder factory. If we can help Sean deal with change, and if it's true how a grown adult like Adam was able to learn to accept and somewhat embrace change, I have a tremendous amount of hope for my boy.
The movie has won a few awards since it's release in 2009. My DirecTV doesn't show it re-airing anytime soon, but I'll keep an eye out for it, and make sure Adam is on the DVR for Jen to see.
I cannot wait to see the parts I've missed!
-BJ
Friday, March 25, 2011
Why Me?
You know the question is coming one day, and no matter when it does, it sucks because really, there is no answer for it.
Why me?
We got that question two nights ago. Sean was having a really hard day. He came home from school very agitated, which can happen whether he has a good or bad day. (My guess is likely sensory overload from the bus) He was not exactly cooperative with Susan, his new TSS, and fought throughout the night with Braden and Emma. By 8pm I had had it, and told him it may be best if he just went to bed for the night and made a clean start tomorrow.
That suggestion threw Sean into one of his famous meltdowns. The best way I can describe it is a temper tantrum times 10. The screaming, crying, flopping, etc. lasts for an hour or more. Nothing or no one can stop it once it starts. His body gets stiff as a board, his eyes practically bulge out of their sockets, and things will be thrown or hit that get in the way. They are scary and frustrating at the same time.
BJ managed to get him upstairs to take a bath, and it seems something in the water chilled him out a little bit. Well, it did to the point where he went from screaming anger to agonizing sobs.
BJ called me upstairs, where Sean had broken down in tears. Over and over again, Sean apologized for everything that happened. He couldn't control it. And that's one thing you do have to understand when it comes to these autism-related meltdowns; he can't control them. He will eventually be taught to with all of the therapy in place now, but it's not going to happen at 7-and-a-half years of age.
We assured him it was okay, but then he went on. He asked us why him. Why does he have Asperger's? Why can't we get rid of it? Why does he have to be bad? He told us he hated his Asperger's and he wanted it to go away so he could be nice again. By the time he was done saying all of this, BJ and I were crying almost as hard as he was.
The hardest thing is that we can't answer why he has Asperger's, and we may never be able to. Even the experts don't know what causes autism.
As heartbreaking as that night was, it actually does mean something good. Sean is becoming more aware of his condition, and he wants to start working to improve it. All of the hard work so far is starting to show some positive results, and I pray we get many more breakthroughs like this in the months and years to come.
Why me?
We got that question two nights ago. Sean was having a really hard day. He came home from school very agitated, which can happen whether he has a good or bad day. (My guess is likely sensory overload from the bus) He was not exactly cooperative with Susan, his new TSS, and fought throughout the night with Braden and Emma. By 8pm I had had it, and told him it may be best if he just went to bed for the night and made a clean start tomorrow.
That suggestion threw Sean into one of his famous meltdowns. The best way I can describe it is a temper tantrum times 10. The screaming, crying, flopping, etc. lasts for an hour or more. Nothing or no one can stop it once it starts. His body gets stiff as a board, his eyes practically bulge out of their sockets, and things will be thrown or hit that get in the way. They are scary and frustrating at the same time.
BJ managed to get him upstairs to take a bath, and it seems something in the water chilled him out a little bit. Well, it did to the point where he went from screaming anger to agonizing sobs.
BJ called me upstairs, where Sean had broken down in tears. Over and over again, Sean apologized for everything that happened. He couldn't control it. And that's one thing you do have to understand when it comes to these autism-related meltdowns; he can't control them. He will eventually be taught to with all of the therapy in place now, but it's not going to happen at 7-and-a-half years of age.
We assured him it was okay, but then he went on. He asked us why him. Why does he have Asperger's? Why can't we get rid of it? Why does he have to be bad? He told us he hated his Asperger's and he wanted it to go away so he could be nice again. By the time he was done saying all of this, BJ and I were crying almost as hard as he was.
The hardest thing is that we can't answer why he has Asperger's, and we may never be able to. Even the experts don't know what causes autism.
As heartbreaking as that night was, it actually does mean something good. Sean is becoming more aware of his condition, and he wants to start working to improve it. All of the hard work so far is starting to show some positive results, and I pray we get many more breakthroughs like this in the months and years to come.
Thursday, March 24, 2011
Look Ma...no training wheels!!!
We orginally got Sean his first bicycle for his 5th birthday. He didn't too too badly with the training wheels on at the time, and when we took the training wheels off due to a problem getting them to balance correctly, he honestly did pretty well then too. Well, we thought so. Sean had a completely different opinion.
The first time he fell off the bike that was it. No more. He told us he couldn't ride a bike, and he wasn't going to even try anymore. Since we didn't know anything was wrong at the time, we just thought he was being stubborn....really REALLY stubborn. Anyways, we have tried to convince Sean to get back on a bike here and there over the past two-and-a-half years, but we've had very little luck doing so.
That is, until this past Sunday. One of Sean's favorite things to do outdoors is to ride his Razor scooter. So over the weekend BJ and I began to point out that, much like the scooter, a bicycle has two wheels, and if he could balance the scooter, the same rules should apply to the bike sitting in the garage.
At first Sean looked at us like we were nuts. Really, what do Mom and Dad know!?! But the message must have broken through Sunday afternoon, because Sean put down his beloved scooter and asked BJ to take the bike out of the garage.
He wobbled a lot at first trying to figure out the pedaling and steering at the same time, but surprisingly he didn't give up....and HE DID IT!!! Here are some pics of the big dude on two wheels...
The first time he fell off the bike that was it. No more. He told us he couldn't ride a bike, and he wasn't going to even try anymore. Since we didn't know anything was wrong at the time, we just thought he was being stubborn....really REALLY stubborn. Anyways, we have tried to convince Sean to get back on a bike here and there over the past two-and-a-half years, but we've had very little luck doing so.
That is, until this past Sunday. One of Sean's favorite things to do outdoors is to ride his Razor scooter. So over the weekend BJ and I began to point out that, much like the scooter, a bicycle has two wheels, and if he could balance the scooter, the same rules should apply to the bike sitting in the garage.
At first Sean looked at us like we were nuts. Really, what do Mom and Dad know!?! But the message must have broken through Sunday afternoon, because Sean put down his beloved scooter and asked BJ to take the bike out of the garage.
He wobbled a lot at first trying to figure out the pedaling and steering at the same time, but surprisingly he didn't give up....and HE DID IT!!! Here are some pics of the big dude on two wheels...
Wednesday, March 23, 2011
An Introduction to Seanie
My sweet prince came into my life on September 2, 2003. He was a challenge from the start, but so sweet, cuddly, and cute, that the challenges didn't seem to matter. More than seven years later, that thought still rings true.
Sean is my middle child, and he has taught me more about what it really means to be a parent than any book or expert ever could. Children with special needs tend to do that to you. Things you would never dream of saying to an authority figure because it's not polite come rolling out of your mouth before you can stop them. Calling the same number over and over again like a crazy person until someone decides to pick up the phone becomes routine just to get help of an assistance. Going into full fundraising mode to get a really expensive and specially trained dog because you don't trust humans to have your child's best interests at heart anymore, suddenly becomes the practical thing to do. I fight for this child daily while making sure the two others I have know Mommy loves them just as much. I make appointments, therapy sessions, have strangers come into my home, all for the hopes that one day, Sean will be as normal as his brother and sister. I revel in his victories, and cry myself to sleep after he has a bad night. All of this is normal now in my daily life.
Looking back we saw the signs. An agitated newborn that refused to sleep. Oh, that's reflux or colic. Having strong aversions to food, medicines, and other items while having intense fixations on others. He's just a different kind of baby. As a toddler never wanting to play with other kids. He would slip completely out of sight. And we would find him later off by himself on a swing or in a backyard. Well, the other kids are just older than him and he has no one to play with. Looking back it was all there. We just thought it was just bad behavior, second-child syndrome, anything but a real problem.
Preschool started reporting problems just as Sean turned 5. He was unable to sit at all during circle time or instruction. He couldn't communicate properly with other children. He was hyper and overwhelmed them. He would fixate on something and wander off to play with it instead of staying with his class. The first trips to the pediatrician and therapists began, and Sean was diagnosed with ADHD. I wasn't sure it was the correct doagnosis, but it was an explanation for Sean's behavior, so we went with it.
Medication helped, until he went to kindergarten and lost the small and supportive confines of preschool. The phone calls and e-mails started almost immediately. Sean didn't have a good day, Sean couldn't stay in his seat, Sean was mean to another child, Sean was disruptive in class. The school district we were in at that time was not willing to provide any help or support, but the phone calls and e-mails continued. That's about the time the hour-long tantrums started. Nothing we said or did calmed him down. Just out of frustration one day I called the insurance company in tears, begging for help. UPMC directed us to our first wraparound agency. We were able to put counselors in the school and keep Sean somewhat under control. We started medications. In the end, none of it really seemed to work.
Halfway through Sean's kindergaren year, we changed wraparound agencies. Our first meeting with them and the school, the new agency read through Sean files, looking more confused as they read. They stopped the principal and Sean's teacher, who were trying to explain his year up to that point, and demanded to know why he had never been tested for Asperger's....
That question hit me like a punch to the gut. I knew Asperger's meant autism, and it took everything I had not to start crying in that meeting. The new counselors saw the look on my face and tried to assure me that Asperger's wasn't a bad diagnosis. Obviously no one ever told them their child might have it.
Sean was evaulated by that agency, along with two psychologist from the Autsim Center, and the diagnosis was confirmed.
Since then we've had a lot of therapy, a lot of fighting, and a lot of victories as well. This blog will share things that have happened, and the things that are yet to come.
Sean is my middle child, and he has taught me more about what it really means to be a parent than any book or expert ever could. Children with special needs tend to do that to you. Things you would never dream of saying to an authority figure because it's not polite come rolling out of your mouth before you can stop them. Calling the same number over and over again like a crazy person until someone decides to pick up the phone becomes routine just to get help of an assistance. Going into full fundraising mode to get a really expensive and specially trained dog because you don't trust humans to have your child's best interests at heart anymore, suddenly becomes the practical thing to do. I fight for this child daily while making sure the two others I have know Mommy loves them just as much. I make appointments, therapy sessions, have strangers come into my home, all for the hopes that one day, Sean will be as normal as his brother and sister. I revel in his victories, and cry myself to sleep after he has a bad night. All of this is normal now in my daily life.
Looking back we saw the signs. An agitated newborn that refused to sleep. Oh, that's reflux or colic. Having strong aversions to food, medicines, and other items while having intense fixations on others. He's just a different kind of baby. As a toddler never wanting to play with other kids. He would slip completely out of sight. And we would find him later off by himself on a swing or in a backyard. Well, the other kids are just older than him and he has no one to play with. Looking back it was all there. We just thought it was just bad behavior, second-child syndrome, anything but a real problem.
Preschool started reporting problems just as Sean turned 5. He was unable to sit at all during circle time or instruction. He couldn't communicate properly with other children. He was hyper and overwhelmed them. He would fixate on something and wander off to play with it instead of staying with his class. The first trips to the pediatrician and therapists began, and Sean was diagnosed with ADHD. I wasn't sure it was the correct doagnosis, but it was an explanation for Sean's behavior, so we went with it.
Medication helped, until he went to kindergarten and lost the small and supportive confines of preschool. The phone calls and e-mails started almost immediately. Sean didn't have a good day, Sean couldn't stay in his seat, Sean was mean to another child, Sean was disruptive in class. The school district we were in at that time was not willing to provide any help or support, but the phone calls and e-mails continued. That's about the time the hour-long tantrums started. Nothing we said or did calmed him down. Just out of frustration one day I called the insurance company in tears, begging for help. UPMC directed us to our first wraparound agency. We were able to put counselors in the school and keep Sean somewhat under control. We started medications. In the end, none of it really seemed to work.
Halfway through Sean's kindergaren year, we changed wraparound agencies. Our first meeting with them and the school, the new agency read through Sean files, looking more confused as they read. They stopped the principal and Sean's teacher, who were trying to explain his year up to that point, and demanded to know why he had never been tested for Asperger's....
That question hit me like a punch to the gut. I knew Asperger's meant autism, and it took everything I had not to start crying in that meeting. The new counselors saw the look on my face and tried to assure me that Asperger's wasn't a bad diagnosis. Obviously no one ever told them their child might have it.
Sean was evaulated by that agency, along with two psychologist from the Autsim Center, and the diagnosis was confirmed.
Since then we've had a lot of therapy, a lot of fighting, and a lot of victories as well. This blog will share things that have happened, and the things that are yet to come.
Subscribe to:
Comments (Atom)