Alan is going away to camp next week. It will be for FIVE days. I am having a minor panic attack about it. The only time Alan has been away without family overnight was one camp weekend. Every other time, at least Joe was with him.
What have I done?
He can't tell me if he's miserable. He can't tell me if they mistreat him. He can't tell me if he's having the time of his life and wants to go every week next summer. He can't tell me anything about it. Oh and he's three hours away from home -- his weekend camp is 30 minutes away.
What have I done?
I know the camp has a good reputation. Lots of kids go each week (about 150) and they've been in operation for years. He will get to be outside and probably climb trees to his heart's content. But what if they won't let him climb trees? How will he communicate his problems? Heck, half the time I have no clue why he's upset. How the heck is a stranger going to figure out the problem?
Well, he's gone to assorted schools since he was 3. I was never there. He did just fine. Most of the dedicated professionals who have worked with him have been fantastic. They aren't in this field for the money. They are in it for the kiddos. Of course the bad apples get all the press so that is what has me stressed.
In reality he will probably have a blast.
I am looking forward to painting his room (it has been probably 8 years since I painted it!) and maybe just having a little "me" time.
Joe is counting the days until little brother leaves.
DH will take a a day or two of vacation and we have some fun evenings planned.
We are all looking forward to five straight nights of sleeping through the night!
What have I done?
I've arranged for a week away for all of us. As Thomas the Tank Engine says, "Sometimes a change is as good as a rest."
Here's to a week of change!
Showing posts with label routine. Show all posts
Showing posts with label routine. Show all posts
Tuesday, July 29, 2014
Thursday, July 10, 2014
TBT - Driving Julie Crazy
Happy Throwback Thursday - Blog Style! Since I am once more in the middle of driving Alan to camp every day, it seemed appropriate to re-run this post from last year. Although I no longer have a "new" car, everything else is still appropriate!
Someone once gave me a small plaque that said "Whoever said you only go around once in life, never had carpool duty."
The
funny thing is, I didn't really mind carpool duty most of the time.
When Joe was in grade school we found another family with whom we meshed
perfectly. I didn't mind driving in the morning, but really did not
like waiting in the after school carpool line. The other mom didn't
like getting up in the morning but didn't mind the after school drive.
It was a good fit. We continued to carpool through two kids each and
two schools and it always worked out well.
Unfortunately not all carpooling is so pleasant. And when you throw special needs into the equation, things can get VERY interesting!
I had the kid that wanted to listen to his choice of music in the morning. Sorry, kid, you want a happy driver and I get very edgy when I don't have my tunes.
I had the time that Alan was going to school a half hour away from home (and then I had to drop Joe off) before I could go home. Naturally, as soon as I pulled into the school parking lot, Alan sprayed his breakfast all over the back seat. Yuck!!
I had the little girl who would only listen to certain songs (and I had a limited number of them on my CDs). I got to hear Lady Gaga's Just Dance song four times one morning because that was how long it took to get to school. Thank goodness that was a close school!
I had the child wearing so much scented body lotion, I felt like I was attempting to walk through the department store perfume department. Have I mentioned that I'm very olfactory sensitive??
I
had the time that a police officer pulled me over and I was so happy
that I had FOUR children with varying degrees of autism that were all
sitting quietly and correctly wearing their seat belts that in never
occurred to me that I might get a ticket. He did give me one for
"improper lane usage" (I got in the turn lane a little before it
technically started) and it was all I could do not to ask him who pissed
in his Cheerios that morning.
I had the child that used to insult Alan (although never when I was driving).
I had the kid that unbuckled himself and leaned over the back of my seat to try to turn off my radio because he was going through a "silence" phase.
I had the time Alan's OCD required him to jump in and out of the open car door at least five times before he would get in or out to stay. Naturally the other ASD boy we were driving decided he would do the same thing.
Then there was the time Alan sat ON another kid. Luckily he had a sister who was at a similar functioning level and he just calmly said, "Alan, you need to get up." He repeated himself several times but didn't get angry or upset.
Of course when Alan tried that with another boy, he shoved Alan out the door.
Nowadays
I do a lot less driving of Joe so it is just Alan. Camp started this
week so I have been dealing with the afternoon parking lot crazies. It
is probably worse for me this year because I have a new car. I am so
worried I will end up like this!
Between buses that do not slow down when going through VERY narrow openings to the nutty parents and the pokey kids, it is enough to make me wonder if a medicine increase for the summer is in order. That would be mine, not Alan's.
Driving Julie Crazy
Someone once gave me a small plaque that said "Whoever said you only go around once in life, never had carpool duty."
The
funny thing is, I didn't really mind carpool duty most of the time.
When Joe was in grade school we found another family with whom we meshed
perfectly. I didn't mind driving in the morning, but really did not
like waiting in the after school carpool line. The other mom didn't
like getting up in the morning but didn't mind the after school drive.
It was a good fit. We continued to carpool through two kids each and
two schools and it always worked out well.Unfortunately not all carpooling is so pleasant. And when you throw special needs into the equation, things can get VERY interesting!
I had the kid that wanted to listen to his choice of music in the morning. Sorry, kid, you want a happy driver and I get very edgy when I don't have my tunes.
I had the time that Alan was going to school a half hour away from home (and then I had to drop Joe off) before I could go home. Naturally, as soon as I pulled into the school parking lot, Alan sprayed his breakfast all over the back seat. Yuck!!
I had the little girl who would only listen to certain songs (and I had a limited number of them on my CDs). I got to hear Lady Gaga's Just Dance song four times one morning because that was how long it took to get to school. Thank goodness that was a close school!
I had the child wearing so much scented body lotion, I felt like I was attempting to walk through the department store perfume department. Have I mentioned that I'm very olfactory sensitive??
I
had the time that a police officer pulled me over and I was so happy
that I had FOUR children with varying degrees of autism that were all
sitting quietly and correctly wearing their seat belts that in never
occurred to me that I might get a ticket. He did give me one for
"improper lane usage" (I got in the turn lane a little before it
technically started) and it was all I could do not to ask him who pissed
in his Cheerios that morning.I had the child that used to insult Alan (although never when I was driving).
I had the kid that unbuckled himself and leaned over the back of my seat to try to turn off my radio because he was going through a "silence" phase.
I had the time Alan's OCD required him to jump in and out of the open car door at least five times before he would get in or out to stay. Naturally the other ASD boy we were driving decided he would do the same thing.
Then there was the time Alan sat ON another kid. Luckily he had a sister who was at a similar functioning level and he just calmly said, "Alan, you need to get up." He repeated himself several times but didn't get angry or upset.
Of course when Alan tried that with another boy, he shoved Alan out the door.
Nowadays
I do a lot less driving of Joe so it is just Alan. Camp started this
week so I have been dealing with the afternoon parking lot crazies. It
is probably worse for me this year because I have a new car. I am so
worried I will end up like this!Between buses that do not slow down when going through VERY narrow openings to the nutty parents and the pokey kids, it is enough to make me wonder if a medicine increase for the summer is in order. That would be mine, not Alan's.
Monday, June 2, 2014
Guerrilla warfare or why I appreciate teachers
As a mom to special needs kiddos, I guarantee you that I appreciate teachers more than your average parent -- even more than a parent who happens to teach. I love my boyz but some days (especially Sundays), I tend to count the hours until Alan returns to school. It is just emotionally draining at times. I am unbelievably cut off from family and friends.
Even though I have teenagers, I can't leave them alone in the house for even the half hour it would take to run to the grocery store. I have been known to put a video on for Luke and run up to the grocery store to pick up milk or prescriptions and I am wracked with guilt the entire time. What if he climbs somewhere he is not supposed to climb? What if he falls and hurts himself? What if he opens a window and climbs out on the roof? The first two have happened repeatedly and although the last one hasn't happened (yet) it is certainly within the realm of possibility.
Now that Joe is driving, I can at least send him to the store, but there are certain things he is not capable of doing. He won't use our medical flexible spending card. He certainly will not look for the best deal when it comes to picking out soup, crackers, eggs, apples, etc. He won't buy any sort of produce unless it is something he will eat. Even though I have tried to show him how to pick out assorted veggies and meats, he is not comfortable buying them. Luckily I have some pretty fantastic neighbors who have been known to share an egg or an onion occasionally.
As always, DH helps immeasurably. But one of us always has to be on "Alan duty". 24/7/365 So when DH has to work on the weekends (it happens when you work for a utility!), or wants an afternoon off to work out, play a game with friends or even go see a movie by himself, that means I am on duty. Don't get me wrong, I do NOT begrudge him that time, just like he does not begrudge me the time I spend on miniatures during the school days. We both need that time "away". But for the person responsible for Alan, it is "duty".
In many ways dealing with Alan is like guerrilla warfare. According to Wikipedia, "Guerrilla warfare is a form of irregular warfare in which a small group of combatants such as armed civilians or irregulars use military tactics including ambushes, sabotage, raids, petty warfare, hit-and-run tactics, and mobility to fight a larger and less-mobile traditional military."
That pretty much sums it up. Alan ambushes, sabotages, fights petty battles and is infinitely more mobile. DH and I are still larger (albeit not for much longer), less-mobile and traditional.
Most of our "battles" are small. But they are frustrating. Sunday morning Alan was whiny. I didn't know if the lack of structure was starting to get to him or what. Finally in desperation I gave him an ibuprofen early in the afternoon. Guess what? He calmed down and was a doll the rest of the day. Poor kid. Something was hurting on him, but he couldn't tell me what. All I had to go on was a whiny kid. Very frustrating!
But all these little things only highlight why I appreciate teachers. Teaching is truly a vocation. At the start of summer vacation, I am sitting here appreciating his teachers every moment.
Even though I have teenagers, I can't leave them alone in the house for even the half hour it would take to run to the grocery store. I have been known to put a video on for Luke and run up to the grocery store to pick up milk or prescriptions and I am wracked with guilt the entire time. What if he climbs somewhere he is not supposed to climb? What if he falls and hurts himself? What if he opens a window and climbs out on the roof? The first two have happened repeatedly and although the last one hasn't happened (yet) it is certainly within the realm of possibility.Now that Joe is driving, I can at least send him to the store, but there are certain things he is not capable of doing. He won't use our medical flexible spending card. He certainly will not look for the best deal when it comes to picking out soup, crackers, eggs, apples, etc. He won't buy any sort of produce unless it is something he will eat. Even though I have tried to show him how to pick out assorted veggies and meats, he is not comfortable buying them. Luckily I have some pretty fantastic neighbors who have been known to share an egg or an onion occasionally.
As always, DH helps immeasurably. But one of us always has to be on "Alan duty". 24/7/365 So when DH has to work on the weekends (it happens when you work for a utility!), or wants an afternoon off to work out, play a game with friends or even go see a movie by himself, that means I am on duty. Don't get me wrong, I do NOT begrudge him that time, just like he does not begrudge me the time I spend on miniatures during the school days. We both need that time "away". But for the person responsible for Alan, it is "duty".
In many ways dealing with Alan is like guerrilla warfare. According to Wikipedia, "Guerrilla warfare is a form of irregular warfare in which a small group of combatants such as armed civilians or irregulars use military tactics including ambushes, sabotage, raids, petty warfare, hit-and-run tactics, and mobility to fight a larger and less-mobile traditional military."
That pretty much sums it up. Alan ambushes, sabotages, fights petty battles and is infinitely more mobile. DH and I are still larger (albeit not for much longer), less-mobile and traditional.Most of our "battles" are small. But they are frustrating. Sunday morning Alan was whiny. I didn't know if the lack of structure was starting to get to him or what. Finally in desperation I gave him an ibuprofen early in the afternoon. Guess what? He calmed down and was a doll the rest of the day. Poor kid. Something was hurting on him, but he couldn't tell me what. All I had to go on was a whiny kid. Very frustrating!
But all these little things only highlight why I appreciate teachers. Teaching is truly a vocation. At the start of summer vacation, I am sitting here appreciating his teachers every moment.
Wednesday, April 16, 2014
Close enough to walk
Where do I start? It has been forever since I've blogged.
Mainly I have spent the last month babysitting contractors working in our kitchen. No, I don't have to sit there and watch them, but being on site helps prevent all sorts of problems and hiccups. That said, today is supposed to be our final inspection and then the great kitchen project should be complete. As soon as it gets painted, I plan to devote an entire blog post to the kitchen, but right now it is only functional, not pretty -- and I want pretty pictures.
I am also having a bit of a "creativity crisis". I haven't worked on my minis in ages, I haven't done any scrapbooking, I sure haven't done any cooking and I obviously haven't done much in the way of blogging. I've been reading and playing computer games. Ugh.
Weekend before last Joe and I went to DC. Again, I feel like I should do an entire post just to highlight our trip. It was a lot of fun, and I want to do it justice. But that isn't what is on my mind this morning either.
Today, I am stressing over people that don't get it.
DH and I were talking this morning about an unexpected offer to watch Alan. I won't shame this person by identification, but I think it is safe to say that the qualifications are not there.
While it is true that we don't have frequent meltdowns, we do make a lot of daily accommodations -- many unconsciously. When we were forced to write out specific directions recently for a babysitter, it was amazing the number of things we did differently from each other and yet consistently the same. Those routines are incredibly important to Alan. Yes, they have to change sometimes, but we just do it. So many things that we've learned over the years we do without agonizing over it.
When someone thinks that we've got it under control or they could do what we do without much training, it is sort of insulting. Many days feel like we are engaged in guerrilla warfare. I am emotionally exhausted most nights.
I just wish people would cut me some slack when I don't do what everyone else does. It isn't just a matter of finding a babysitter -- it is a matter of finding a reliable, adaptable, comfortable, trustworthy, flexible person who has some autism training.
They sure aren't around every corner!
Mainly I have spent the last month babysitting contractors working in our kitchen. No, I don't have to sit there and watch them, but being on site helps prevent all sorts of problems and hiccups. That said, today is supposed to be our final inspection and then the great kitchen project should be complete. As soon as it gets painted, I plan to devote an entire blog post to the kitchen, but right now it is only functional, not pretty -- and I want pretty pictures.
I am also having a bit of a "creativity crisis". I haven't worked on my minis in ages, I haven't done any scrapbooking, I sure haven't done any cooking and I obviously haven't done much in the way of blogging. I've been reading and playing computer games. Ugh.
Weekend before last Joe and I went to DC. Again, I feel like I should do an entire post just to highlight our trip. It was a lot of fun, and I want to do it justice. But that isn't what is on my mind this morning either.
Today, I am stressing over people that don't get it.
DH and I were talking this morning about an unexpected offer to watch Alan. I won't shame this person by identification, but I think it is safe to say that the qualifications are not there.While it is true that we don't have frequent meltdowns, we do make a lot of daily accommodations -- many unconsciously. When we were forced to write out specific directions recently for a babysitter, it was amazing the number of things we did differently from each other and yet consistently the same. Those routines are incredibly important to Alan. Yes, they have to change sometimes, but we just do it. So many things that we've learned over the years we do without agonizing over it.
When someone thinks that we've got it under control or they could do what we do without much training, it is sort of insulting. Many days feel like we are engaged in guerrilla warfare. I am emotionally exhausted most nights.
I just wish people would cut me some slack when I don't do what everyone else does. It isn't just a matter of finding a babysitter -- it is a matter of finding a reliable, adaptable, comfortable, trustworthy, flexible person who has some autism training.
They sure aren't around every corner!
Monday, November 11, 2013
Why the world revolves around Joe ...
The world revolves around Joe. The world may not be aware of that yet, but it is definitely true. For a kid who can be so helpful, he just cannot look at things from another person's point of view. In that way he is a lot like a cat.
This morning Joe asks DH, "Do you know what the best time is to start a movie that Alan likes to watch start to finish?"
From the other room I'm thinking, "Duh, right after he gets home from school."
DH said, "I don't know. What is the best time?"
Joe's response? "Right after he gets on the bus to go to school because then I can stop and start it whenever I want."
Sigh.
As a family we tend to drink from Tervis Tumblers. They allow us to keep track of whose drink is whose (since we all take them all over the house), leave very little marks on the furniture and allow for minimal spilling during the inevitable upset. I usually use one of the lids like what is shown on the left (mainly because I prefer to use a straw) while Joe (and DH) tend to use the style on the right.
When I came home from surgery, DH had washed my cup and was getting out a fresh one and grabbed one of the lids like is shown on the right but knowing I like straws, also got me a straw.
Joe observed my cup last night at dinner and said, "You know you can drink out of those lids and you don't need a straw."
Mom: "But I prefer using a straw."
Joe: "But you don't need one."
Mom: "I know." He just looked at me blankly.
Sigh.
Joe asked for me to make some hard boiled eggs this morning. To be fair, he actually asked me to teach him how to make them. As a family we don't eat a lot of eggs, except for Joe who usually eats two every day. If left to his own devices, he would eat a half dozen eggs a day, but we set the limit early. And once there is a rule, it is usually followed.
DH had stopped at the store and picked up 18 eggs and we had about 6 in the refrigerator. I told Joe we were going to make the 18 eggs into hard boiled eggs and save the others for whatever.
Joe asks, "Like to cook other ways?"
Mom: "No, I was thinking more for if we need them for cooking other things."
Joe: "Like fried or scrambled eggs?"
Mom: "No, like a cake or pie or meatloaf or whatever."
Joe: "But I can still use them for fried or scrambled if I want those, right?"
Sigh.
He's been trying to help out since my second surgery (I am doing much better, btw) and several times a day we hear about how Alan should have learned this or that by now. I'll get right on that, kid. After all, we haven't been trying to teach him those things for the last 15 years we've just been skating by.
The world does revolve around Joe. We just haven't been able to inform the whole world. I guess I better get on that, too ...
This morning Joe asks DH, "Do you know what the best time is to start a movie that Alan likes to watch start to finish?" From the other room I'm thinking, "Duh, right after he gets home from school."
DH said, "I don't know. What is the best time?"
Joe's response? "Right after he gets on the bus to go to school because then I can stop and start it whenever I want."
Sigh.
As a family we tend to drink from Tervis Tumblers. They allow us to keep track of whose drink is whose (since we all take them all over the house), leave very little marks on the furniture and allow for minimal spilling during the inevitable upset. I usually use one of the lids like what is shown on the left (mainly because I prefer to use a straw) while Joe (and DH) tend to use the style on the right.
When I came home from surgery, DH had washed my cup and was getting out a fresh one and grabbed one of the lids like is shown on the right but knowing I like straws, also got me a straw. Joe observed my cup last night at dinner and said, "You know you can drink out of those lids and you don't need a straw."
Mom: "But I prefer using a straw."
Joe: "But you don't need one."
Mom: "I know." He just looked at me blankly.
Sigh.
Joe asked for me to make some hard boiled eggs this morning. To be fair, he actually asked me to teach him how to make them. As a family we don't eat a lot of eggs, except for Joe who usually eats two every day. If left to his own devices, he would eat a half dozen eggs a day, but we set the limit early. And once there is a rule, it is usually followed.
DH had stopped at the store and picked up 18 eggs and we had about 6 in the refrigerator. I told Joe we were going to make the 18 eggs into hard boiled eggs and save the others for whatever.
Joe asks, "Like to cook other ways?"
Mom: "No, I was thinking more for if we need them for cooking other things."
Joe: "Like fried or scrambled eggs?"
Mom: "No, like a cake or pie or meatloaf or whatever."
Joe: "But I can still use them for fried or scrambled if I want those, right?"
Sigh.
He's been trying to help out since my second surgery (I am doing much better, btw) and several times a day we hear about how Alan should have learned this or that by now. I'll get right on that, kid. After all, we haven't been trying to teach him those things for the last 15 years we've just been skating by.
The world does revolve around Joe. We just haven't been able to inform the whole world. I guess I better get on that, too ...
Thursday, September 19, 2013
When "failing" is good
Joe had his first "real" job interview yesterday and he didn't get the job, but we've changed directions and everyone is happy about that.
Last spring, we had talked to the lead counselor at the special needs camp that he and Alan attend in the hopes of finding a way for Joe to attend camp without wasting a counselor on him. (DH and I did not want to give up our "kid free" weekends!!) The counselor knows Joe and when we talked to him he suggested the possibility that they could in essence create a position for him. The camp folks really came through and late this summer, they hired him as the Assistant Arts & Crafts counselor! Best of all it is a paying job. Joe was very excited when he got his first paycheck!!
In addition to that, Joe is volunteering one day a week (for 3 hours) at a local
hospital. He also starts today volunteering two days a week (again for
3 hours) at a nursing home and he had been volunteering at a thrift
store as well (which does not need him for the rest of September since
they are doing an inventory) but he should be able to return there in
October.
Any of the three volunteer positions could potentially lead to paid employment and frankly, that is the sort of job where Joe will shine. He already had a very favorable review at the hospital where he has only been for two months. I am sure the nursing home and thrift store will quickly realize how helpful and smart Joe is without him having to worry about first impressions.
Sounds win-win to me!
But back to the failed interview, he had applied for several "bus boy" positions and this interview was with one of the restaurants. When they called to ask him to come in to interview, the manager told me they were primarily interested in weekends. I told them about the camp, but according to the manager "we could work around that".
Of course his definition of "working around that" was to have Joe quit his camp job (which he likes a lot) for a job he might not like. Um, no. Not going to happen.
So yesterday afternoon his job search woman, Joe and I had a long talk and decided to temporarily abandon his job search.
This morning Joe came downstairs and informed me that since this was going to be the way of things for awhile he was going to start setting his alarm so that he could be sure to get up on time for his "jobs" (he had been relying on me to wake him up on time).
I couldn't be happier that he didn't get the "real" job yesterday.
Last spring, we had talked to the lead counselor at the special needs camp that he and Alan attend in the hopes of finding a way for Joe to attend camp without wasting a counselor on him. (DH and I did not want to give up our "kid free" weekends!!) The counselor knows Joe and when we talked to him he suggested the possibility that they could in essence create a position for him. The camp folks really came through and late this summer, they hired him as the Assistant Arts & Crafts counselor! Best of all it is a paying job. Joe was very excited when he got his first paycheck!!
 |
| All decked out and ready to go to "work" |
Any of the three volunteer positions could potentially lead to paid employment and frankly, that is the sort of job where Joe will shine. He already had a very favorable review at the hospital where he has only been for two months. I am sure the nursing home and thrift store will quickly realize how helpful and smart Joe is without him having to worry about first impressions.
Sounds win-win to me!
But back to the failed interview, he had applied for several "bus boy" positions and this interview was with one of the restaurants. When they called to ask him to come in to interview, the manager told me they were primarily interested in weekends. I told them about the camp, but according to the manager "we could work around that".
Of course his definition of "working around that" was to have Joe quit his camp job (which he likes a lot) for a job he might not like. Um, no. Not going to happen.
So yesterday afternoon his job search woman, Joe and I had a long talk and decided to temporarily abandon his job search.
This morning Joe came downstairs and informed me that since this was going to be the way of things for awhile he was going to start setting his alarm so that he could be sure to get up on time for his "jobs" (he had been relying on me to wake him up on time).
I couldn't be happier that he didn't get the "real" job yesterday.
Sunday, August 11, 2013
Das Boot
In so many ways Alan is oblivious to what is going on in our house. But he has been surprisingly affected by my foot surgery.
The first night after my surgery he was very upset. DH had essentially locked me in our room with my foot propped up. We were both worried that in Alan's "gusto" he would bang into my foot and hurt it somehow. So while he likes to hang out in our bed (snuggling, wrestling, watching his iPad, etc.) we do frequently have to lock him out of our room (when one of us is sick, tired, DH is working weird hours, etc.) and it is never much of an issue. However the night of my surgery Alan was very fretful. Finally shortly before it was his bedtime, DH had Alan come into our room to give me a kiss goodnight and after that he was noticeably calmer.
After that first night we allowed him access to our room and he has been very gentle with my foot. He has checked it out, but always gently. He watches me strap on Das Boot or cross a room on crutches but he doesn't get in my way. He even threw out trash for me (although getting him to hand me my drink cup is still a bit of a challenge).
He has been a lot more agreeable for the last day or so since I've spent more time in the family room and less in the bedroom. Even though I am on "his" section of the sectional, he moved to a different place without argument.
This afternoon he was pestering to "go bye-bye" until I took off Das Boot and put my foot up on some pillows and then he sat down to his plate of food without further argument.
It is sort of funny and nice to see these little expressions of maturity.
The first night after my surgery he was very upset. DH had essentially locked me in our room with my foot propped up. We were both worried that in Alan's "gusto" he would bang into my foot and hurt it somehow. So while he likes to hang out in our bed (snuggling, wrestling, watching his iPad, etc.) we do frequently have to lock him out of our room (when one of us is sick, tired, DH is working weird hours, etc.) and it is never much of an issue. However the night of my surgery Alan was very fretful. Finally shortly before it was his bedtime, DH had Alan come into our room to give me a kiss goodnight and after that he was noticeably calmer.
After that first night we allowed him access to our room and he has been very gentle with my foot. He has checked it out, but always gently. He watches me strap on Das Boot or cross a room on crutches but he doesn't get in my way. He even threw out trash for me (although getting him to hand me my drink cup is still a bit of a challenge).He has been a lot more agreeable for the last day or so since I've spent more time in the family room and less in the bedroom. Even though I am on "his" section of the sectional, he moved to a different place without argument.
This afternoon he was pestering to "go bye-bye" until I took off Das Boot and put my foot up on some pillows and then he sat down to his plate of food without further argument.
It is sort of funny and nice to see these little expressions of maturity.
Sunday, July 28, 2013
An eye on the future
In two weeks, my "baby" starts high school. Two weeks later he turns 15. Where has the time gone? It seems only yesterday that I was holding the most agreeable baby in the world (or so he seemed after his brother). Now I am practically looking eye to eye with Alan.
Yet he is still so "young". He still wants to play "This Little Piggy" and "Row, Row your Boat." He still watches Veggie Tales and Thomas the Tank Engine. But he had a "girlfriend" his last year of middle school.
He is such a little conundrum!!!
We have had wonderful successes lately. Almost conversations and break-throughs in communication. I've also had moments of abject terror that haven't been chronicled here where I fear for this young man's future. He doesn't have a sibling that can care for him -- Joe can barely take care of himself -- so what is going to happen to him when DH and I are gone?
How will his new teacher and school turn out? I know of almost no one that has gone to this school and I have no knowledge at all of his new teacher.
It is funny, but over the years, things have always worked out.
So while this is not usually an overly religious blog, I am just going to say that I am trusting that God will take care of us yet again and this high school mine field we are facing will be successfully negotiated.
At least I am trying to trust and not let the terror win.
Yet he is still so "young". He still wants to play "This Little Piggy" and "Row, Row your Boat." He still watches Veggie Tales and Thomas the Tank Engine. But he had a "girlfriend" his last year of middle school.
He is such a little conundrum!!!
We have had wonderful successes lately. Almost conversations and break-throughs in communication. I've also had moments of abject terror that haven't been chronicled here where I fear for this young man's future. He doesn't have a sibling that can care for him -- Joe can barely take care of himself -- so what is going to happen to him when DH and I are gone?
How will his new teacher and school turn out? I know of almost no one that has gone to this school and I have no knowledge at all of his new teacher.
It is funny, but over the years, things have always worked out.
- When we wanted to put Joe in private school because of the horrible experience we were having in public school, DH got a promotion. That school turned out to be one of the best moves we made.
- When Joe was looking at high school and we couldn't find a private one that wanted him, we went back to our local public school and for the most part it was a rousing success.
- When Alan needed a private school, the Catholic school system here opened up a center for autism a few miles from our home.
- When Alan's OCD became more than the private school could handle, we were past elementary school so we didn't have to fight with the school district why he wouldn't go back to that school.
So while this is not usually an overly religious blog, I am just going to say that I am trusting that God will take care of us yet again and this high school mine field we are facing will be successfully negotiated. At least I am trying to trust and not let the terror win.
Monday, July 1, 2013
Little Joe
Looking back on Joe as an infant, it is easy to see he had autism. Of course DH and I had very limited experience with babies so to us, he was just "Joe" and if we thought anything was wrong, we figured it was because we didn't know how to handle a baby.
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| 3 trains in one hand - that is a unique skill. |
But Joe did not like cuddling much. He never imitated noises and if you would try to imitate his noises, he would get quiet and listen to you but not make his own. He ALWAYS had at least two things in his hands at all times.
He would make himself go rigid when he was angry and he went to sleep best by being left alone. Of course, unlike many children with infant onset autism, Joe also slept like a rock. He slept through the night at 2.5 months and before 4 months he was sleeping 12 hours straight every night.
We were in a playgroup and I noticed that all the other kids were starting to talk at around 10 - 18 months, but not Joe. Nor was he pointing. I started pouring through What to Expect the First Year and couldn't find anything about late talking children except autism. The description in those days was quite narrow and of course, Joe didn't sit in the corner and rock, he didn't toe walk and he wasn't excessively flappy. As a matter of fact, my incredibly non-autistic niece did much more toe walking and flapping than Joe!
At 18 months, DH and I were assured by everyone and their pediatrician that Joe would be talking by age 2 and to just "Give it time. Boys take longer."
Needless to say at 2 Joe still wasn't talking. As a matter of fact, he had about 15 words when he was evaluated by a speech therapist shortly after turning 2 and 5 of them were letters of the alphabet. He had briefly said "see" and sort of waved in a direction (although still not pointing) but "see" degenerated into "gee" which degenerated into "guy". Needless to say the SLP that First Steps provided was not impressed and she was the first one that said "PDD-NOS" to us (of course with all the necessary disclaimers "I'm not a doctor", "You really need to get him evaluated", etc.)
We loathed that first speech therapist for more reasons than just the fact that she was the first one to say "autism" to us. She had a very hesitant way of speaking, constantly apologizing and never finishing her sentences, and DH and I just looked at her and at each other and thought, "This woman is going to teach our son to talk?"
After her we did get a wonderful speech therapist that we loved and Joe loved, but he still didn't talk. He actually deteriorated further to where he only had 10 real words, so we finally bit the bullet and took him to a neurologist.
As with the speech therapist we managed to get the worst neurologist in town. He had hideous eye contact and stupid boring toys and then said that Joe had poor eye contact and wasn't interested in toys. Well duh!
Of course the sad thing was that he was correct in his diagnosis. We were still in
Sometime that fall I read Let Me Hear Your Voice by Catherine Maurice. The book was incredibly inspirational and really motivated me to get going on ABA. At that time ABA was not being funded at all through the schools so we were looking at privately paying. Needless to say, that can get pretty expensive pretty quick so we decided to do something we jokingly referred to as "high chair therapy". We could still cram Joe into a high chair and it was an easy way to restrain him. We got a handful of favorite snacks and tried to get him to imitate us or say certain things in exchange for a snack.
He resisted at first -- big surprise! In one of the early sessions, DH was working with him and Joe grabbed DH by the cheeks and pulled him in close as though to get his attention. Then he smacked DH upside the head as hard as his little two year old arm could hit. As DH said, "He might not have been talking, but he got his point across perfectly!"
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| Clutching foam letters & numbers at Discovery Zone. |
About six months after this, we started our home ABA program. We were privately paying for it so we only did it for about 10 hours a week. But this was the jackpot. Joe could have been the poster child for ABA.
His preschool teacher (whom we didn't tell about the program) stopped me one day as I was dropping him off and talked my ear off about all the amazing progress Joe had made during summer school that summer. Um, yeah, that isn't to your credit that is due to the fabulous paras we have! We did tell her at that point though that we had been doing ABA and she helped us to get partially reimbursed by the school district.
ABA was Joe's primary method of learning for a year or more. One para taught him most of his prepositions in one afternoon by having him get "on" the table, "under" the table, etc. It was fun for him and yet incredibly educational. Another taught him his colors in exchange for her French fries.
And of course, DH and I learned so many "foolproof" ways to deal with autistic children that we couldn't fail when we had a second child with the exact same diagnosis, now could we?!?!?!
Tuesday, June 25, 2013
Driving Julie Crazy
Someone once gave me a small plaque that said "Whoever said you only go around once in life, never had carpool duty."
The funny thing is, I didn't really mind carpool duty most of the time. When Joe was in grade school we found another family with whom we meshed perfectly. I didn't mind driving in the morning, but really did not like waiting in the after school carpool line. The other mom didn't like getting up in the morning but didn't mind the after school drive. It was a good fit. We continued to carpool through two kids each and two schools and it always worked out well.
Unfortunately not all carpooling is so pleasant. And when you throw special needs into the equation, things can get VERY interesting!
I had the kid that wanted to listen to his choice of music in the morning. Sorry, kid, you want a happy driver and I get very edgy when I don't have my tunes.
I had the time that Alan was going to school a half hour away from home (and then I had to drop Joe off) before I could go home. Naturally, as soon as I pulled into the school parking lot, Alan sprayed his breakfast all over the back seat. Yuck!!
I had the little girl who would only listen to certain songs (and I had a limited number of them on my CDs). I got to hear Lady Gaga's Just Dance song four times one morning because that was how long it took to get to school. Thank goodness that was a close school!
I had the child wearing so much scented body lotion, I felt like I was attempting to walk through the department store perfume department. Have I mentioned that I'm very olfactory sensitive??
I had the time that a police officer pulled me over and I was so happy that I had FOUR children with varying degrees of autism that were all sitting quietly and correctly wearing their seat belts that in never occurred to me that I might get a ticket. He did give me one for "improper lane usage" (I got in the turn lane a little before it technically started) and it was all I could do not to ask him who pissed in his Cheerios that morning.
I had the child that used to insult Alan (although never when I was driving).
I had the kid that unbuckled himself and leaned over the back of my seat to try to turn off my radio because he was going through a "silence" phase.
I had the time Alan's OCD required him to jump in and out of the open car door at least five times before he would get in or out to stay. Naturally the other ASD boy we were driving decided he would do the same thing.
Then there was the time Alan sat ON another kid. Luckily he had a sister who was at a similar functioning level and he just calmly said, "Alan, you need to get up." He repeated himself several times but didn't get angry or upset.
Of course when Alan tried that with another boy, he shoved Alan out the door.
Nowadays I do a lot less driving of Joe so it is just Alan. Camp started this week so I have been dealing with the afternoon parking lot crazies. It is probably worse for me this year because I have a new car. I am so worried I will end up like this!
Between buses that do not slow down when going through VERY narrow openings to the nutty parents and the pokey kids, it is enough to make me wonder if a medicine increase for the summer is in order. That would be mine, not Alan's.
The funny thing is, I didn't really mind carpool duty most of the time. When Joe was in grade school we found another family with whom we meshed perfectly. I didn't mind driving in the morning, but really did not like waiting in the after school carpool line. The other mom didn't like getting up in the morning but didn't mind the after school drive. It was a good fit. We continued to carpool through two kids each and two schools and it always worked out well.Unfortunately not all carpooling is so pleasant. And when you throw special needs into the equation, things can get VERY interesting!
I had the kid that wanted to listen to his choice of music in the morning. Sorry, kid, you want a happy driver and I get very edgy when I don't have my tunes.
I had the time that Alan was going to school a half hour away from home (and then I had to drop Joe off) before I could go home. Naturally, as soon as I pulled into the school parking lot, Alan sprayed his breakfast all over the back seat. Yuck!!
I had the little girl who would only listen to certain songs (and I had a limited number of them on my CDs). I got to hear Lady Gaga's Just Dance song four times one morning because that was how long it took to get to school. Thank goodness that was a close school!
I had the child wearing so much scented body lotion, I felt like I was attempting to walk through the department store perfume department. Have I mentioned that I'm very olfactory sensitive??
I had the time that a police officer pulled me over and I was so happy that I had FOUR children with varying degrees of autism that were all sitting quietly and correctly wearing their seat belts that in never occurred to me that I might get a ticket. He did give me one for "improper lane usage" (I got in the turn lane a little before it technically started) and it was all I could do not to ask him who pissed in his Cheerios that morning.I had the child that used to insult Alan (although never when I was driving).
I had the kid that unbuckled himself and leaned over the back of my seat to try to turn off my radio because he was going through a "silence" phase.
I had the time Alan's OCD required him to jump in and out of the open car door at least five times before he would get in or out to stay. Naturally the other ASD boy we were driving decided he would do the same thing.
Then there was the time Alan sat ON another kid. Luckily he had a sister who was at a similar functioning level and he just calmly said, "Alan, you need to get up." He repeated himself several times but didn't get angry or upset.
Of course when Alan tried that with another boy, he shoved Alan out the door.
Nowadays I do a lot less driving of Joe so it is just Alan. Camp started this week so I have been dealing with the afternoon parking lot crazies. It is probably worse for me this year because I have a new car. I am so worried I will end up like this!Between buses that do not slow down when going through VERY narrow openings to the nutty parents and the pokey kids, it is enough to make me wonder if a medicine increase for the summer is in order. That would be mine, not Alan's.
Wednesday, June 19, 2013
So what's Alan been up to?
It may seem that I've been overly preoccupied with Joe lately. In a big part, it has been because I see so much of him every day. He is not working yet (please God, let that happen soon!) and therefore I think of him a lot. My last few blogs were about Father's Day (and after all, Joe is the one who first made us parents) and the cats (and Joe was the one who really wanted both Misty and Diesel) and so I really haven't said much about Alan -- although I did arrange a funny collection of his climbing pictures on Facebook!
But Alan has actually been having a very good summer. His first week was rough. Despite having our back to school "conversation" that made me so happy, his first week of summer school had somedifficult hellish afternoons.
A big part of it was just the different schedule. He used to get home from school around 4 pm. We eat early around here so he could have a snack and easily make it to dinner time. But now he was getting home at 12:30. Uh oh! That didn't cut it. He actually had to eat some healthy stuff or play or something to pass the time. He spent the first four days sitting less than three feet away from me saying "medicine, medicine, medicine" until I thought I would lose it.
After Alan figured out the schedule, he has practically been my dream child. He has been doing amazingly well at school, too. He is really getting the hang of his school issued iPad with the communication program Go Talk Now.
When he wanted to watch his videos, he used to sit in front of the TV holding the DVD box in his hand and just bellow "downstairs" (when he was upstairs) and "blue ball" (when he was in the basement -- long story!) Of course he never (or rarely) watched TV on the main floor. Figures.
After a little work he now goes and gets his talker (what we call the school issued iPad) and proceeds to press the buttons so that he tells us what video he wants to watch -- and NO bellowing. He is even doing this for the babysitter and when we had company over. The best was when he tracked down both of us (on different occasions) when we were nowhere near the talker and handed it to us. Success!!!!
For those that do not know, Alan has apraxia (an oral motor planning problem) so that when he
wants to say something, that isn't always what comes out of his mouth. I
knew this, but it has been sort of awe-inspiring to see the way the GTN
has improved his ability to communicate and really cut down on the
screaming.
Some very clear examples are the time he verbally asked for a cherry pop-tart but typed out blueberry on the talker. I gave him the blueberry and he took it without a fuss. If he had truly wanted the cherry, this would have been a time to pitch a fit, but he happily accepted the blueberry.
And just this afternoon he asked for The Star of Christmas DVD (a Veggie Tales movie) verbally, but I waited until he had typed in on the talker and what he really wanted to watch was Thomas' Ultimate Christmas. So here were two very obvious times that would have caused stress in the house if we had listened to what he said but by using the talker, we bypassed the difficulty.
Now we just have to move him into abstract concepts. OK, that might be a bit down the road.
But Alan has actually been having a very good summer. His first week was rough. Despite having our back to school "conversation" that made me so happy, his first week of summer school had some
A big part of it was just the different schedule. He used to get home from school around 4 pm. We eat early around here so he could have a snack and easily make it to dinner time. But now he was getting home at 12:30. Uh oh! That didn't cut it. He actually had to eat some healthy stuff or play or something to pass the time. He spent the first four days sitting less than three feet away from me saying "medicine, medicine, medicine" until I thought I would lose it.
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| Unfortunately this picture wasn't zoomed. This is how close he would sit to me -- ALL afternoon! |
After Alan figured out the schedule, he has practically been my dream child. He has been doing amazingly well at school, too. He is really getting the hang of his school issued iPad with the communication program Go Talk Now.
When he wanted to watch his videos, he used to sit in front of the TV holding the DVD box in his hand and just bellow "downstairs" (when he was upstairs) and "blue ball" (when he was in the basement -- long story!) Of course he never (or rarely) watched TV on the main floor. Figures.
After a little work he now goes and gets his talker (what we call the school issued iPad) and proceeds to press the buttons so that he tells us what video he wants to watch -- and NO bellowing. He is even doing this for the babysitter and when we had company over. The best was when he tracked down both of us (on different occasions) when we were nowhere near the talker and handed it to us. Success!!!! |
| And this is how he gets out of bed in the morning. |
Some very clear examples are the time he verbally asked for a cherry pop-tart but typed out blueberry on the talker. I gave him the blueberry and he took it without a fuss. If he had truly wanted the cherry, this would have been a time to pitch a fit, but he happily accepted the blueberry.
And just this afternoon he asked for The Star of Christmas DVD (a Veggie Tales movie) verbally, but I waited until he had typed in on the talker and what he really wanted to watch was Thomas' Ultimate Christmas. So here were two very obvious times that would have caused stress in the house if we had listened to what he said but by using the talker, we bypassed the difficulty.
Now we just have to move him into abstract concepts. OK, that might be a bit down the road.
Monday, June 3, 2013
Back to school "Conversation"
Today was Alan's first day of summer school and I had to wake him up. For those of you struggling with sleep issues, I have to point out that this is a relatively new development. He NEVER used to sleep in during the summer. There ARE perks to the teen years!
So I went to wake him up and he wasn't very enthusiastic.
Mom: You start summer school today.
No response.
Mom: You are going to school today to see Ms. Betty.
Alan opens his eyes and looks at me.
Alan: Lunch?
Mom: Yes, I'll pack you a lunch. (Even though summer school is only a half day, I figured he would need a snack and I would pack it in his lunchbox.)
This gets him out of bed and downstairs but not moving quickly. I hurry and pack his backpack. I put the lunch in it and the two iPads. Alan is watching me carefully.
Alan: Swimming?
Mom: No, that is camp. That starts in 3 weeks. This is still summer school with Ms. Betty.
Alan: Bus?
Mom: Yes, you ride the bus to summer school.
There are no more arguments. He just got up and started going about his morning routine.
These "conversations" are few and far between, but wow, it is pretty cool when they happen!
So I went to wake him up and he wasn't very enthusiastic.
Mom: You start summer school today.
No response.
Mom: You are going to school today to see Ms. Betty.
Alan opens his eyes and looks at me.
Alan: Lunch?
Mom: Yes, I'll pack you a lunch. (Even though summer school is only a half day, I figured he would need a snack and I would pack it in his lunchbox.)
This gets him out of bed and downstairs but not moving quickly. I hurry and pack his backpack. I put the lunch in it and the two iPads. Alan is watching me carefully.
Alan: Swimming?
Mom: No, that is camp. That starts in 3 weeks. This is still summer school with Ms. Betty.
Alan: Bus?
Mom: Yes, you ride the bus to summer school.
There are no more arguments. He just got up and started going about his morning routine.
These "conversations" are few and far between, but wow, it is pretty cool when they happen!
Thursday, May 30, 2013
Summer, how do I hate thee? Let me count the ways ...
I know some parents that absolutely love summer. None of them have special needs kids. Coincidence? I think not!
My favorite day of the year? Usually the first day of school in the fall. I saw this picture on Facebook last fall and fell in love. Obviously staged, but still hilarious. This could so be me.
But as it is May not August, I have to content myself with enumerating the many ways I hate summer ...
1) The heat. Let's face it, I am of an age where heat is a problem. I have hot flashes in December but they are seriously uncomfortable in July.
2) The humidity. I live in a very muggy location. If you walk outside, you start dripping. Ugh. The old adage of "Men sweat, women perspire and dancers glow" is BS. I sweat and so do most people I know. It is not a pretty thing. Nor is it fragrant and I am very olfactory in nature.
3) The clothes. Let's just say I have a body best viewed with clothing ON!!! Shorts, tank tops, etc. are really not that flattering. I look much better in jeans and a sweater.
4) The options. What can you do if you are cold? Exercise, put on layers, eat (one of my favorite activities) or snuggle under blankets. Let's face it, sleeping in the winter is so much more fun! What can you do if you are hot? Sit in front of fan, drink something cool, or take off clothing (see #3).
5) My hair. I have thick, curly hair. I frizzes less if I let it air dry. In summer that can take a while. And it gets hot hanging down my neck. But if I keep it short, I resemble a Poodle. Sigh.
6) The hours. Alan used to always get up with the sun and go to bed when it got dark. This has gotten better since he has become a teen, but used to always be a big reason I hated summer.
7) The pool. We live very close to a neighborhood pool. It is noisy and frequently makes traffic a nightmare. It is also a spotlight for how my children are different. When most people have teenagers, they do not have to take them to the pool anymore. They also do not have to supervise them because their teenagers do not swim where they are not supposed to swim or try to climb the water slide -- yup, Alan tried to climb UP the water slide last year! And then of course there is #3.
8) The yard work. To be fair, I do as little as possible in the yard (see #1 and #2) but it keeps DH busy more than the occasional snowfall in the winter and I happen to like to spend time with my hubby in the evenings. At least Joe is helping out in the yard more.
9) The absence of vacation. This might seem like a weird thing, but we took our last family vacation last summer. Alan tried to climb over the third story balcony on to the one below and tried to swim for the horizon (he's got a real "thing" about task completion) last summer. This forced us to make the decision that it is just too hard to take him anywhere remote anymore. The problem is that I loved family vacations. I don't think about it in the winter, but I sure do in the summer. And it hard.
10) The schedule. Autistic people (and especially children) crave routine. Routine goes out the window in the summer. And summer school and camps are shorter than school hours. I also have to provide transportation to camp. All of which give me less time for my hobbies. Selfish, but true.
To be fair, there are some perks about summer so I have to give them their due ...
1) The hubby. I get to see more of him because he takes days off work to help me out.
2) The laundry. There is just less of it in the summer. The boys can wear two outfits on average every day and it just doesn't take up as much room as their jeans and sweatshirts do in the winter. The only problem is that laundry is one chore I do not mind. Figures.
3) The colors. I love looking at flowers.
4) The light. I actually do suffer from Seasonal Affectedness Disorder a bit.
5) The food. I have never been much of a veggie eater, but salad and fresh fruit? Oh yeah! And then there is ice cream. 'Nuff said.
My favorite day of the year? Usually the first day of school in the fall. I saw this picture on Facebook last fall and fell in love. Obviously staged, but still hilarious. This could so be me.
But as it is May not August, I have to content myself with enumerating the many ways I hate summer ...
1) The heat. Let's face it, I am of an age where heat is a problem. I have hot flashes in December but they are seriously uncomfortable in July.
2) The humidity. I live in a very muggy location. If you walk outside, you start dripping. Ugh. The old adage of "Men sweat, women perspire and dancers glow" is BS. I sweat and so do most people I know. It is not a pretty thing. Nor is it fragrant and I am very olfactory in nature.
3) The clothes. Let's just say I have a body best viewed with clothing ON!!! Shorts, tank tops, etc. are really not that flattering. I look much better in jeans and a sweater.
4) The options. What can you do if you are cold? Exercise, put on layers, eat (one of my favorite activities) or snuggle under blankets. Let's face it, sleeping in the winter is so much more fun! What can you do if you are hot? Sit in front of fan, drink something cool, or take off clothing (see #3).
5) My hair. I have thick, curly hair. I frizzes less if I let it air dry. In summer that can take a while. And it gets hot hanging down my neck. But if I keep it short, I resemble a Poodle. Sigh.
6) The hours. Alan used to always get up with the sun and go to bed when it got dark. This has gotten better since he has become a teen, but used to always be a big reason I hated summer.
7) The pool. We live very close to a neighborhood pool. It is noisy and frequently makes traffic a nightmare. It is also a spotlight for how my children are different. When most people have teenagers, they do not have to take them to the pool anymore. They also do not have to supervise them because their teenagers do not swim where they are not supposed to swim or try to climb the water slide -- yup, Alan tried to climb UP the water slide last year! And then of course there is #3.
8) The yard work. To be fair, I do as little as possible in the yard (see #1 and #2) but it keeps DH busy more than the occasional snowfall in the winter and I happen to like to spend time with my hubby in the evenings. At least Joe is helping out in the yard more.
9) The absence of vacation. This might seem like a weird thing, but we took our last family vacation last summer. Alan tried to climb over the third story balcony on to the one below and tried to swim for the horizon (he's got a real "thing" about task completion) last summer. This forced us to make the decision that it is just too hard to take him anywhere remote anymore. The problem is that I loved family vacations. I don't think about it in the winter, but I sure do in the summer. And it hard.
10) The schedule. Autistic people (and especially children) crave routine. Routine goes out the window in the summer. And summer school and camps are shorter than school hours. I also have to provide transportation to camp. All of which give me less time for my hobbies. Selfish, but true.
To be fair, there are some perks about summer so I have to give them their due ...
1) The hubby. I get to see more of him because he takes days off work to help me out.
2) The laundry. There is just less of it in the summer. The boys can wear two outfits on average every day and it just doesn't take up as much room as their jeans and sweatshirts do in the winter. The only problem is that laundry is one chore I do not mind. Figures.
3) The colors. I love looking at flowers.
4) The light. I actually do suffer from Seasonal Affectedness Disorder a bit.
5) The food. I have never been much of a veggie eater, but salad and fresh fruit? Oh yeah! And then there is ice cream. 'Nuff said.
Monday, May 6, 2013
The ties that bind
I have often said over the years that Joe would have been perfectly happy being an only child. A big part of that, I'm sure, is that Alan needs more than a little extra attention and consideration in almost every aspect of our life.
This past weekend Alan had overnight camp and Joe had prom so this was the first time Joe got to experience home life without his little brother. By early Saturday morning, Joe was saying how odd it was without Alan around. He didn't say how nice it was (which I was half expecting) just that it was weird/different/unusual.
It was nice for DH and I to be able to both be there for such a huge event in Joe's life and Alan had a blast lying in the pine tree at camp. He came home more than a bit sap covered and very tired but happy to be home. He was making his cooing/talking noises all night last night!
As for prom, Joe apparently even danced (although probably not well) -- I guess as long as his date didn't mind then everything is OK. It sounds like they had a good time. Joe did say it was better than the Homecoming dance he went to his junior year. I am pretty sure having a date helped.
Then last night Joe says to me, "It is good that we are all home together again."
So does the young man likes his little brother more than he usually lets on or was it just that Alan's absence was a change to the routine? DH says it is probably the latter. I like to think it is the former.
Happy Monday!
This past weekend Alan had overnight camp and Joe had prom so this was the first time Joe got to experience home life without his little brother. By early Saturday morning, Joe was saying how odd it was without Alan around. He didn't say how nice it was (which I was half expecting) just that it was weird/different/unusual.
It was nice for DH and I to be able to both be there for such a huge event in Joe's life and Alan had a blast lying in the pine tree at camp. He came home more than a bit sap covered and very tired but happy to be home. He was making his cooing/talking noises all night last night!As for prom, Joe apparently even danced (although probably not well) -- I guess as long as his date didn't mind then everything is OK. It sounds like they had a good time. Joe did say it was better than the Homecoming dance he went to his junior year. I am pretty sure having a date helped.
Then last night Joe says to me, "It is good that we are all home together again."
So does the young man likes his little brother more than he usually lets on or was it just that Alan's absence was a change to the routine? DH says it is probably the latter. I like to think it is the former.
Happy Monday!
Friday, April 5, 2013
Autism mom snaps after filling out her thousandth form ...
There is a very common saying in the autistic community, "If you've met a child with autism, you've met A child with autism." I get that, really I do. They are all so amazingly different. Heck, even my two with the exact same diagnosis (PDD-NOS) from the exact same gene pool are nothing alike. What was a bear with Joe, Alan picked up in a matter of days (potty training). What worked like a charm with Joe had no affect on Alan (ABA therapy). That is life with spectrum.
Given all this, I do understand why all the forms exist. Every time I have to sign either of the boys up for camp, therapy, an art class, school, or whatever I get a form to fill out. Most of the questions are fairly straightforward. Even typical parents get inundated with some of these forms. I have my sister's contact information as well as the pediatrician's and both dentist's phone numbers pretty much memorized.
And many of the other questions, I understand why they must exist because all these kids are so wonderfully different. But when it comes time to enroll Alan for summer camp -- which he has attended at the same place for at least the last 5 years (and I think more), I have this urge to get sarcastic (who, me?) on some of the questions.
Is your child toilet trained?
What I want to answer: Well, he gets in the bathroom, but frequently not the toilet.
What I answer: Yes
What are his favorite outdoor activities?
What I want to answer: Climbing on the neighbor's deck rail and walking across the cross beam on the swing set.
What I answer: Swimming and climbing on the jungle gym.
What are his favorite indoor activities?
What I want to answer: Chewing his toes, riding his scooter off the climbing platform in the basement and scaling the stairwell like a monkey.
What I answer: Playing trains, computer and watching videos.
What activities does he dislike?
What I want to answer: Pretty much everything else.
What I answer: Paper/pencil activities and arts and crafts.
What physical, diet or medical restrictions does your child have?
What I want to answer: The list to the right.
What I answer: Only self imposed. (Hey, sometimes sarcasm IS the truth!)
Does your child experience obsessive behaviors? What item/activity triggers this compulsion?
What I want to answer: Hell, yeah!! Everything!!
What I answer: Yes. Stairs and doors are the biggest triggers -- use ramps wherever possible. Frequently new things are ritualized quickly. Try to introduce new things in various manners.
How does your child communicate?
What I want to answer: He yells and verbal stims constantly. (Isn't that communication?)
What I answer: Single words, mostly nouns.
What does your child do when upset?
What I want to answer: He turns into a miniature tornado.
What I answer: Yells, swats, thrashes, flips chairs, headbutts, etc.
What interventions or calming techniques help your child?
What I want to answer: Nothing really. Just ride out the storm.
What I answer: If possible, leave him alone to work out his anger. A "break" spot has been effective at school.
What self-stimulatory or self-injurious behaviors does your child exhibit?
What I want to answer: He will yell "NEE-WAH-JU-BEE" in a rap format in the exact pitch so that it sounds like fingernails on a chalkboard.
What I answer: Lots of verbal stims and yelling. He will also pick at his fingernails (and toenails if he can get to them) until they bleed.
Probably just as well I keep most of these snarky comments to myself, don't you think?
Given all this, I do understand why all the forms exist. Every time I have to sign either of the boys up for camp, therapy, an art class, school, or whatever I get a form to fill out. Most of the questions are fairly straightforward. Even typical parents get inundated with some of these forms. I have my sister's contact information as well as the pediatrician's and both dentist's phone numbers pretty much memorized.
And many of the other questions, I understand why they must exist because all these kids are so wonderfully different. But when it comes time to enroll Alan for summer camp -- which he has attended at the same place for at least the last 5 years (and I think more), I have this urge to get sarcastic (who, me?) on some of the questions.
Is your child toilet trained?
What I want to answer: Well, he gets in the bathroom, but frequently not the toilet.
What I answer: Yes
What are his favorite outdoor activities?
What I want to answer: Climbing on the neighbor's deck rail and walking across the cross beam on the swing set.
What I answer: Swimming and climbing on the jungle gym.
What are his favorite indoor activities?
What I want to answer: Chewing his toes, riding his scooter off the climbing platform in the basement and scaling the stairwell like a monkey.
What I answer: Playing trains, computer and watching videos.
What activities does he dislike?
What I want to answer: Pretty much everything else.
What I answer: Paper/pencil activities and arts and crafts.
What physical, diet or medical restrictions does your child have?What I want to answer: The list to the right.
What I answer: Only self imposed. (Hey, sometimes sarcasm IS the truth!)
Does your child experience obsessive behaviors? What item/activity triggers this compulsion?
What I want to answer: Hell, yeah!! Everything!!
What I answer: Yes. Stairs and doors are the biggest triggers -- use ramps wherever possible. Frequently new things are ritualized quickly. Try to introduce new things in various manners.
How does your child communicate?
What I want to answer: He yells and verbal stims constantly. (Isn't that communication?)What I answer: Single words, mostly nouns.
What does your child do when upset?
What I want to answer: He turns into a miniature tornado.
What I answer: Yells, swats, thrashes, flips chairs, headbutts, etc.
What interventions or calming techniques help your child?
What I want to answer: Nothing really. Just ride out the storm.
What I answer: If possible, leave him alone to work out his anger. A "break" spot has been effective at school.
What self-stimulatory or self-injurious behaviors does your child exhibit?
What I want to answer: He will yell "NEE-WAH-JU-BEE" in a rap format in the exact pitch so that it sounds like fingernails on a chalkboard.
What I answer: Lots of verbal stims and yelling. He will also pick at his fingernails (and toenails if he can get to them) until they bleed.
Probably just as well I keep most of these snarky comments to myself, don't you think?
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