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
Thursday, March 31, 2011
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.
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