A long, long time ago in a land far, far away.... ok.... 35 years and a few streets over..... I remember my mom going over to the neighbour's house in the morning and having coffee. "Coffee Klatching" or something like that is what we called it. All the moms were stay-at-home moms and there were a bazillion kids running around back then. I'm sure the moms laughed and cried and vented. The children in the neighbourhood always had to be on their best behaviour because everybody watched out for everybody else's kids. In other words, they wouldn't hesitate to tattle to our parents if they saw us cut across the neighbour's lawn!
I do believe something similar to those days goes on now at Panera Bread in Elk Grove, but I have something that comes even closer. Something special....
Every Saturday morning I wake up, cursing the fact that we signed up Sean for gymnastics at 8:30am, and try - usually unsuccessfully - to get Sean and myself out the door without waking the rest of the family. He's on a Special Olympics gymnastics team that is run out of the Elk Grove Gymnastics School (EGGS) a mile or so from the house.
EGGS is the reason I'm no longer a helicopter mom. As much as Sean has benefited from the program by way of strengthening and socializing and becoming more independent, I have benefited as well. And when I say helicopter mom, I mean BlackHawk, radar locked in, never out of reach. I was there!
Not knowing anybody or anything, and being newly diagnosed, we signed Sean up for what we thought was a class. The fact that he was now part of a team was a bonus. I remember the coaches and parents telling me that I would eventually leave Sean's side in the gym and graduate to letting him overnight with the team. All I could think of was, "No way!!!!"
The coaches are wonderful. The peer coaches - the high school kids that pull themselves out of bed every Saturday morning to help our children - are the best this generation has to offer.
I do leave Sean's side now. Sometimes I even leave the gym altogether and run an errand (O...M....G!!!!). The trust and care at the gym is boundless.
The parents remind me of the parents from my old neighbourhood. We care for each other's kids like they were our own. We cheer them on together. We feel their pain or frustration together. Much like our kids are a team, we parents are our own team. We vent, we laugh, we cry, we share stories and therapy suggestions. We have become the ultimate support group.
I knew when I walked into practice on Saturday morning and said, "Ugh, we have had the worst week," that not only would they understand, but chances were, someone else might have experienced the same thing. Turns out, state testing caused a few kids to be out of routine and be less than stellar in behaviour.
We may not have coffee or sit around the kitchen table. And certainly, we don't have a bazillion kids running around. But on Saturday mornings, when the rest of the world just doesn't understand what my life is like, I drag myself out of bed and go to practice.
Because it is there that I am amongst friends and that is the most comforting feeling of all.
Monday, March 7, 2011
Sunday, March 6, 2011
A Power Failure
Let's talk about money.... Oh, I know, isn't that one of the taboo topics of any dinner party? Money, sex and religion??? But darling, this ain't no dinner party....
Money is foremost in my mind this morning due to the happenings of a mere 24 hours ago. I casually pressed the button on the garage door opener and, in my imagination, my bank account opened and money flew threw the air.
I have no power in my detached garage. None.
The prime suspect is a sidewalk that leads to it. During the past few weeks we've been noticing that our gate is rubbing on the concrete and you have to kick it hard at the bottom to open it. I think the freeze/thaw cycles have caused our sidewalk to shift in such a way as to crack the electrical line beneath it.
Did I say crack? I meant CRAP!!!!
Having left my day job three weeks ago, I see many restless nights ahead of me as the numbers for repair come in.
So let's talk about money.... and the lack of it for most families with autistic children. Remember a couple of years ago the government passed some kind of bill that was supposed to ease our medical expenses? Have any of you out there benefited????
Hmmmmm.....
Here's how I've been on the receiving end of the government and insurance industry helping me....
Music therapy.... an amazing, fabulous program that has helped Sean through so much of his difficulties with not only sound but also physically and emotionally and absolutely not covered by my insurance company.
Occupational therapy.... Sean could not sit up in a chair in first grade. He had both gross and fine motor skill difficulties. When my co-pay went from $20 a visit to $40, I had to cut back on the number of sessions. The insurance company saw it as Sean no longer needing it. Eventually, the inevitable occurred and we were denied.
Chiropractic care.... Sean is always tense and the muscles in his back and neck are constantly sore. He loves the deep pressure as well as the relief. I think it's quite therapeutic for him but it's not covered.
Speech therapy.... Sean wasn't diagnosed until first grade. That's too late in the insurer's eyes even though it took us years to get through the system of waiting lists. Dis and dat will remain part of Sean's vocabulary until I can find the right home remedy because it's not covered either.
Not covered, not covered, not covered. All of the above, all that Sean either needs or has benefited from, are not covered. Even to see a psychologist - one that bonds with Sean because working with autistic kids is their speciality - is only partially covered after meeting the deductible.
Aren't we shooting ourselves in the foot by denying our children services when they are younger and better able to benefit from them?
With all the bills and laws, walkouts... health care this and health care that.... they talk about how it will affect the little guy.
I sure hope that the little guy they are talking about is Sean or your child.....
Money is foremost in my mind this morning due to the happenings of a mere 24 hours ago. I casually pressed the button on the garage door opener and, in my imagination, my bank account opened and money flew threw the air.
I have no power in my detached garage. None.
The prime suspect is a sidewalk that leads to it. During the past few weeks we've been noticing that our gate is rubbing on the concrete and you have to kick it hard at the bottom to open it. I think the freeze/thaw cycles have caused our sidewalk to shift in such a way as to crack the electrical line beneath it.
Did I say crack? I meant CRAP!!!!
Having left my day job three weeks ago, I see many restless nights ahead of me as the numbers for repair come in.
So let's talk about money.... and the lack of it for most families with autistic children. Remember a couple of years ago the government passed some kind of bill that was supposed to ease our medical expenses? Have any of you out there benefited????
Hmmmmm.....
Here's how I've been on the receiving end of the government and insurance industry helping me....
Music therapy.... an amazing, fabulous program that has helped Sean through so much of his difficulties with not only sound but also physically and emotionally and absolutely not covered by my insurance company.
Occupational therapy.... Sean could not sit up in a chair in first grade. He had both gross and fine motor skill difficulties. When my co-pay went from $20 a visit to $40, I had to cut back on the number of sessions. The insurance company saw it as Sean no longer needing it. Eventually, the inevitable occurred and we were denied.
Chiropractic care.... Sean is always tense and the muscles in his back and neck are constantly sore. He loves the deep pressure as well as the relief. I think it's quite therapeutic for him but it's not covered.
Speech therapy.... Sean wasn't diagnosed until first grade. That's too late in the insurer's eyes even though it took us years to get through the system of waiting lists. Dis and dat will remain part of Sean's vocabulary until I can find the right home remedy because it's not covered either.
Not covered, not covered, not covered. All of the above, all that Sean either needs or has benefited from, are not covered. Even to see a psychologist - one that bonds with Sean because working with autistic kids is their speciality - is only partially covered after meeting the deductible.
Aren't we shooting ourselves in the foot by denying our children services when they are younger and better able to benefit from them?
With all the bills and laws, walkouts... health care this and health care that.... they talk about how it will affect the little guy.
I sure hope that the little guy they are talking about is Sean or your child.....
Saturday, March 5, 2011
The Social Network
Shhhhh.... can you hear that? It's the sound of all three children playing in the other room - together...or as together as they can be - and not outwardly annoying and/or torturing each other.
I can guarantee this moment of bliss will not last.....
Dang, already over.
Carissa the 11 year old is yelling at the 4 year old. The 4 year old is growling back at her. For once, Sean is not the issue.
I remember all those time of being asked how Sean plays. What were the words? Cooperative and ???? I don't know. Parallel?
It was always so important to whatever professional I was consulting with at the time.
Years ago Carissa would bring out her My Little Ponies castle and set it up in the living room. She had tens of little ponies and little pony accessories that you would eventually lose track of only to step on in the middle of the night. Sean would bring out his tank and shoot at the castle. He especially like when the ponies attempted to escape in their hot air balloon.
Each child was doing their own thing but they were together.
I never knew how that scene - which occurred so often in my house - would be categorized.
With all the technology available for today's youth, do kids even know how to play together? Play cooperatively like the professionals want?
Sean's learning.... baby steps. It takes alot of prompting. It takes alot of listening. He's doing better. When he's at the computer, he no longer shoves his sister away from him. Sean even lets Ashley order him around for a time on Wii Ski. The other day, Ashley actually asked to play with him!
Progress.
But, for the most part, he prefers to be on his own. Reading, playing video games, listening to his MP3 player, researching things on Wikipedia (I told him he had to find a hobby other than picking at his skin - he chose Wikipedia - yea for me!). He's absolutely content to be engrossed in his own thoughts, the sole inhabitant of his own world.
A couple of years ago I worked a junior high dance at the local park district. Along one wall sat five or six girls. Each with a cellphone. Each texting the other.
My nieces did the same thing after Christmas dinner this past year.
You have to wonder sometimes what's a trait of autism and what has become the "norm" for the current generation.
Sean may not be the only one that has difficulty socializing....
I can guarantee this moment of bliss will not last.....
Dang, already over.
Carissa the 11 year old is yelling at the 4 year old. The 4 year old is growling back at her. For once, Sean is not the issue.
I remember all those time of being asked how Sean plays. What were the words? Cooperative and ???? I don't know. Parallel?
It was always so important to whatever professional I was consulting with at the time.
Years ago Carissa would bring out her My Little Ponies castle and set it up in the living room. She had tens of little ponies and little pony accessories that you would eventually lose track of only to step on in the middle of the night. Sean would bring out his tank and shoot at the castle. He especially like when the ponies attempted to escape in their hot air balloon.
Each child was doing their own thing but they were together.
I never knew how that scene - which occurred so often in my house - would be categorized.
With all the technology available for today's youth, do kids even know how to play together? Play cooperatively like the professionals want?
Sean's learning.... baby steps. It takes alot of prompting. It takes alot of listening. He's doing better. When he's at the computer, he no longer shoves his sister away from him. Sean even lets Ashley order him around for a time on Wii Ski. The other day, Ashley actually asked to play with him!
Progress.
But, for the most part, he prefers to be on his own. Reading, playing video games, listening to his MP3 player, researching things on Wikipedia (I told him he had to find a hobby other than picking at his skin - he chose Wikipedia - yea for me!). He's absolutely content to be engrossed in his own thoughts, the sole inhabitant of his own world.
A couple of years ago I worked a junior high dance at the local park district. Along one wall sat five or six girls. Each with a cellphone. Each texting the other.
My nieces did the same thing after Christmas dinner this past year.
You have to wonder sometimes what's a trait of autism and what has become the "norm" for the current generation.
Sean may not be the only one that has difficulty socializing....
Friday, March 4, 2011
Next!
Got the shirt - woo hoo! He left it in another classroom during state testing. Small victory.
The something that I eluded to in an earlier post.... it's a bus thing. It's getting worked out but it will take time and effort. I think it's amazing that the Utopian society that existed on the bus 30 years ago still survives and actually thrives today even with the addition of bus aides and on-board video cameras.......
Wow, what a day I had yesterday! On top of Life happening, I had to pay a visit to what is known as the Secretary of State in Illinois, the DMV to some, and H E double hockey sticks to just about everyone else.
My task was simple enough. Replace the license plate sticker that refused to stick to my clean, dry, garage-kept car with said plate.
Is it ever that simple???
The rudeness I encountered was beyond any that I had ever experienced before. When the female clerk - during my explanation - said "Whatever" to me, I could not believe it.
I was shocked, appalled.
All I wanted was a sticker that stuck.
What if Sean was older and I had sent him in to complete this supposedly uncomplicated task? I want him to be more independent so I insist on him ordering his food at Denny's and checking out his own library books.
What if???
What.... if....???
I worry about society and the lost art of nice-ness....of compassion....of helping out a fellow human being for absolutely no tangible return.
I worry about our kids. I do not have any physical disabilities. I do not, to my knowledge, have any mental deficits. I do not require any special assistance.
What I do require is respect.
When our child takes those steps towards independence and either stumbles, fumbles, or falls...
Will they get respect?
Or is the more appropriate question.... How mean and rude...how cruel... will the world be to them?
The something that I eluded to in an earlier post.... it's a bus thing. It's getting worked out but it will take time and effort. I think it's amazing that the Utopian society that existed on the bus 30 years ago still survives and actually thrives today even with the addition of bus aides and on-board video cameras.......
Wow, what a day I had yesterday! On top of Life happening, I had to pay a visit to what is known as the Secretary of State in Illinois, the DMV to some, and H E double hockey sticks to just about everyone else.
My task was simple enough. Replace the license plate sticker that refused to stick to my clean, dry, garage-kept car with said plate.
Is it ever that simple???
The rudeness I encountered was beyond any that I had ever experienced before. When the female clerk - during my explanation - said "Whatever" to me, I could not believe it.
I was shocked, appalled.
All I wanted was a sticker that stuck.
What if Sean was older and I had sent him in to complete this supposedly uncomplicated task? I want him to be more independent so I insist on him ordering his food at Denny's and checking out his own library books.
What if???
What.... if....???
I worry about society and the lost art of nice-ness....of compassion....of helping out a fellow human being for absolutely no tangible return.
I worry about our kids. I do not have any physical disabilities. I do not, to my knowledge, have any mental deficits. I do not require any special assistance.
What I do require is respect.
When our child takes those steps towards independence and either stumbles, fumbles, or falls...
Will they get respect?
Or is the more appropriate question.... How mean and rude...how cruel... will the world be to them?
Thursday, March 3, 2011
Fabric and Frustration
Can I call in sick to Life????
Today is going to be one of those days. Crap.
The school bell has yet to ring and already I've made two phone calls and sent three emails.
Never get comfortable. Never.
Everybody is ok. It's just something.... Isn't it always something????
Take, for example, this morning's exchange with Sean. He wears two shirts to school during the winter - a t-shirt worn under a long sleeved shirt or sweatshirt. Sometime during the day he'll ditch the long sleeved one. Tuesday he walked in, let out a huge sigh when he saw me and said, "I forgot my shirt at school."
No big deal. Tomorrow.
Wednesday passed and no shirt was brought home. Thankfully, due to state testing, he is only attending one school this week and it's a pretty small school. Odds of finding the shirt are fairly good.
Now, before you start thinking that I'm some totally anal retentive mom - which I admittedly normally am - it's the whole new shirt, worn twice thing. Money is tight.
I asked Sean if he remembered where he left it. My guess is in the gym.
"Well.... the schedule has been so screwed up with testing...."
"Sean, do you remember taking it off for gym?"
"Well.... you would not believe how much the schedule has changed...."
He then went on for several more sentences about testing and the schedule. I waved the white flag and sent a note to his teacher.
It's no big deal. It's no.... big.... deal. It's just stuff. And for someone - me - who is so worried about finding a shirt, I had to go through his closet to figure out which one it was!!!!
Knock on wood, but if he were ever lost, I'd fail the first question the officer asked me, "Ma'am, what was he wearing?"
"Uhhhhhh, clothes?"
It's all minor in the end. It's the difficulty communicating that frustrates me the most. Sean's been fighting a cold all week and combined with the testing and the schedule changes, he's been a little off. Maybe I've been off, too. If I were to paraphrase some elder female member of my family, they would have said something like, "Frances skipped the day they were handing out patience and she really should have been in line - TWICE!"
I should be - no, I am - proud of him for how well he has handled all that has been thrown at him this week.
He's been amazing.
Who cares about a stupid shirt?
Today is going to be one of those days. Crap.
The school bell has yet to ring and already I've made two phone calls and sent three emails.
Never get comfortable. Never.
Everybody is ok. It's just something.... Isn't it always something????
Take, for example, this morning's exchange with Sean. He wears two shirts to school during the winter - a t-shirt worn under a long sleeved shirt or sweatshirt. Sometime during the day he'll ditch the long sleeved one. Tuesday he walked in, let out a huge sigh when he saw me and said, "I forgot my shirt at school."
No big deal. Tomorrow.
Wednesday passed and no shirt was brought home. Thankfully, due to state testing, he is only attending one school this week and it's a pretty small school. Odds of finding the shirt are fairly good.
Now, before you start thinking that I'm some totally anal retentive mom - which I admittedly normally am - it's the whole new shirt, worn twice thing. Money is tight.
I asked Sean if he remembered where he left it. My guess is in the gym.
"Well.... the schedule has been so screwed up with testing...."
"Sean, do you remember taking it off for gym?"
"Well.... you would not believe how much the schedule has changed...."
He then went on for several more sentences about testing and the schedule. I waved the white flag and sent a note to his teacher.
It's no big deal. It's no.... big.... deal. It's just stuff. And for someone - me - who is so worried about finding a shirt, I had to go through his closet to figure out which one it was!!!!
Knock on wood, but if he were ever lost, I'd fail the first question the officer asked me, "Ma'am, what was he wearing?"
"Uhhhhhh, clothes?"
It's all minor in the end. It's the difficulty communicating that frustrates me the most. Sean's been fighting a cold all week and combined with the testing and the schedule changes, he's been a little off. Maybe I've been off, too. If I were to paraphrase some elder female member of my family, they would have said something like, "Frances skipped the day they were handing out patience and she really should have been in line - TWICE!"
I should be - no, I am - proud of him for how well he has handled all that has been thrown at him this week.
He's been amazing.
Who cares about a stupid shirt?
Wednesday, March 2, 2011
Drove My Chevy to the Levee and Found That the Music Did not Die
Yesterday was M & M day.... Music therapy and McDonalds. It's been a staple in our schedule for years. "Mr. Craig" recently came across our initial paperwork from April 2005.
Wow.... forever doesn't even come close to describing that amount of time. We were literally different people back then. Thus, it doesn't even seem like our lifetime ago....
Creative Exchange Music Therapy Clinic in Westchester, Illinois (http://www.creativeexchangemusic.com/) is where you'll find us on those days that will end up with dinner in a bag. Sean will be in back with Mr. Craig and I'll be in the front waiting room, sitting in a chair that it way too comfortable, with the girls reading books or watching them play with the toys.
The last couple of sessions I've noticed a change in how Sean and Mr. Craig interact. I don't want to say it's more "adult" because that word has always seemed so stodgy to me. Rather, it's like buds in a jam session. It's pretty cool to experience....
We began therapy there because Sean was sensitive to others making noise and yet, he could be the loudest one of all. Silent car rides. Whispers. He didn't even want us speaking in our own home. It wasn't fair to his sister to insist on silence.
Sean also was stuck in the pattern of going all the way to the beginning of his monologue (his version of a conversation) if he made a mistake with the wording. Some of them were 15 minutes or more in length! He would stop and begin again and again.
One the things that Mr. Craig does is play the piano with the kids. He has everything colour-coded so it's quite simple. He has the child play a melody and then he would play the harmony. The challenging thing for Sean was not only to hear the noise but to deal with messing up the fingering on the piano. Sean always wanted to go back to the beginning but Mr. Craig continued to play on. Soon Sean learned that he needed to play on as well.....
The lesson that he learned at the piano translated into our lives at home. The constant going back in Sean's speech has not completely gone away - he tends to do it when he's stressed and/or really trying to push a point - but it has dramatically fallen off.
And, of course, we can talk!!!!
Through various other exercises, Sean's stamina has improved as well as his rigidness. Gone are the days where he would scream and cry throughout the entire session. My husband can now even take him to therapy (against routine!!!) and Sean will have a good day.
There is music and noise in our lives once again and we have Mr. Craig to thank. He was able to break through the hard shell and get to the sweet stuff inside.
So thanks Craig, for making a difference.....
Wow.... forever doesn't even come close to describing that amount of time. We were literally different people back then. Thus, it doesn't even seem like our lifetime ago....
Creative Exchange Music Therapy Clinic in Westchester, Illinois (http://www.creativeexchangemusic.com/) is where you'll find us on those days that will end up with dinner in a bag. Sean will be in back with Mr. Craig and I'll be in the front waiting room, sitting in a chair that it way too comfortable, with the girls reading books or watching them play with the toys.
The last couple of sessions I've noticed a change in how Sean and Mr. Craig interact. I don't want to say it's more "adult" because that word has always seemed so stodgy to me. Rather, it's like buds in a jam session. It's pretty cool to experience....
We began therapy there because Sean was sensitive to others making noise and yet, he could be the loudest one of all. Silent car rides. Whispers. He didn't even want us speaking in our own home. It wasn't fair to his sister to insist on silence.
Sean also was stuck in the pattern of going all the way to the beginning of his monologue (his version of a conversation) if he made a mistake with the wording. Some of them were 15 minutes or more in length! He would stop and begin again and again.
One the things that Mr. Craig does is play the piano with the kids. He has everything colour-coded so it's quite simple. He has the child play a melody and then he would play the harmony. The challenging thing for Sean was not only to hear the noise but to deal with messing up the fingering on the piano. Sean always wanted to go back to the beginning but Mr. Craig continued to play on. Soon Sean learned that he needed to play on as well.....
The lesson that he learned at the piano translated into our lives at home. The constant going back in Sean's speech has not completely gone away - he tends to do it when he's stressed and/or really trying to push a point - but it has dramatically fallen off.
And, of course, we can talk!!!!
Through various other exercises, Sean's stamina has improved as well as his rigidness. Gone are the days where he would scream and cry throughout the entire session. My husband can now even take him to therapy (against routine!!!) and Sean will have a good day.
There is music and noise in our lives once again and we have Mr. Craig to thank. He was able to break through the hard shell and get to the sweet stuff inside.
So thanks Craig, for making a difference.....
Tuesday, March 1, 2011
This Better Not Be Decaf!
First, a bit of housekeeping.....
I do plan on watching Parenthood tonight. According to my commentor, the parents will be telling the boy that he has Aspergers.
I'm not sure if former President Bush ever gave broccoli another try, but I will be tuning in tonight to see how it goes.
Besides, everyone and everything deserves a second chance, right?
Now onto the blog....
When I think of chances - and taking them - I also think of change. Because giving a new television show a chance, a new therapy, a new school, even a new person in your life all essentially lead to change. Beginning the supplement at night for Sean changed our lives. Going to Children's Memorial Hospital in Chicago changed our lives. Making the decision to start a family changed our lives.
We are all about change. Even if our lives are so routine and mundane that we can sleepwalk through our days, life is changing.
We loathe routine and yet we crave it at the same time.
In January, Sean began taking two classes every morning at the local junior high. Afterwards, he would be transported to his regular day school.
I wrote this in my journal that first frightening day...
I'm sick this morning. Utterly incapable of celebrating and taking part in this momentous occasion.... except to remind my husband to not forget to pack Sean's lunch. Binder? Check. Special pencils sharpened and put in case? Check. Locker combo in jacket pocket? Check.
Everything was set. I took a picture and off he went....
I am grateful that I exist in a fog of antibiotics, anti-histamines, anti-anythings right now because if I weren't, I'd be completely freaking out....
What was I so scared of that day? What was Sean scared of? It was the change in routine. It was taking a chance at doing something different. Would he fail? Would he succeed? How would it affect our lives?
That day I wished life could be like the day before and the day before that.... Although being integrated was something that we had always worked towards, the moment it happened I wanted our old lives back. Give me the routine of the bus coming in the morning, the daily reports on his behaviour. Give me the comfort level where the staff and I can go by first names.
Give me the routine because I don't want this change. I was scared. Scared for everyone including Sean.
As it turns out, Sean had a great day. He loved it. And now this week where he has to attend his regular school full-time for ISAT testing, he is bummed. I worried about the change in our new routine while he worried about missing out on all the new possibilities of the day that the junior high - with almost ten times the number of students and vast corridors to walk and explore - held for him.
When we think about our autistic children, routine is everything. It overruns us because we see the routine of our children as sometimes being a rock hanging from our shoulders and slowing us down.
But think about this.... How do we react and feel when we don't get our morning caffeine fix? What about the traffic jam? Or sleeping through the alarm? Or getting some unexpected change at work?
Changes in our routine - even minute ones - can really throw us off. We can have a bad day as a result of one, minor change.
In essence, we want routine in our lives as much as our children do.
So when we have those moments and think our children are different from everyone else.... think again.
Are they really?
I do plan on watching Parenthood tonight. According to my commentor, the parents will be telling the boy that he has Aspergers.
I'm not sure if former President Bush ever gave broccoli another try, but I will be tuning in tonight to see how it goes.
Besides, everyone and everything deserves a second chance, right?
Now onto the blog....
When I think of chances - and taking them - I also think of change. Because giving a new television show a chance, a new therapy, a new school, even a new person in your life all essentially lead to change. Beginning the supplement at night for Sean changed our lives. Going to Children's Memorial Hospital in Chicago changed our lives. Making the decision to start a family changed our lives.
We are all about change. Even if our lives are so routine and mundane that we can sleepwalk through our days, life is changing.
We loathe routine and yet we crave it at the same time.
In January, Sean began taking two classes every morning at the local junior high. Afterwards, he would be transported to his regular day school.
I wrote this in my journal that first frightening day...
First day of junior high. Big day. Five years of special ed and finally, finally, a first day..... He'll start with two classes and then we'll go from there.
I'm sick this morning. Utterly incapable of celebrating and taking part in this momentous occasion.... except to remind my husband to not forget to pack Sean's lunch. Binder? Check. Special pencils sharpened and put in case? Check. Locker combo in jacket pocket? Check.
Everything was set. I took a picture and off he went....
I am grateful that I exist in a fog of antibiotics, anti-histamines, anti-anythings right now because if I weren't, I'd be completely freaking out....
What was I so scared of that day? What was Sean scared of? It was the change in routine. It was taking a chance at doing something different. Would he fail? Would he succeed? How would it affect our lives?
That day I wished life could be like the day before and the day before that.... Although being integrated was something that we had always worked towards, the moment it happened I wanted our old lives back. Give me the routine of the bus coming in the morning, the daily reports on his behaviour. Give me the comfort level where the staff and I can go by first names.
Give me the routine because I don't want this change. I was scared. Scared for everyone including Sean.
As it turns out, Sean had a great day. He loved it. And now this week where he has to attend his regular school full-time for ISAT testing, he is bummed. I worried about the change in our new routine while he worried about missing out on all the new possibilities of the day that the junior high - with almost ten times the number of students and vast corridors to walk and explore - held for him.
When we think about our autistic children, routine is everything. It overruns us because we see the routine of our children as sometimes being a rock hanging from our shoulders and slowing us down.
But think about this.... How do we react and feel when we don't get our morning caffeine fix? What about the traffic jam? Or sleeping through the alarm? Or getting some unexpected change at work?
Changes in our routine - even minute ones - can really throw us off. We can have a bad day as a result of one, minor change.
In essence, we want routine in our lives as much as our children do.
So when we have those moments and think our children are different from everyone else.... think again.
Are they really?
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