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 problems. Show all posts
Showing posts with label problems. 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.
Thursday, May 1, 2014
The haircut from h&%$
Last night Alan got his hair cut. We've been going to the same kid friendly hair salon for more years than I care to remember. Even though Alan is taller than most of the hair stylists, they just smile and say "come on in!"
The last 3-4 visits have been HELL. There is really no other word to describe them. Alan gets in the car willingly enough and even gets out of the car at the hair salon fine. He goes inside and starts stalling but still nothing major. He has to use the restroom and agonize over which video to watch (but he always selects Shrek) and then he even sits in the chair and gets the cape on with only a yell or two. And then all hell breaks loose.
He stands up and sits down so often and so fast that the poor Ali has to cut his hair a swipe at a time. We've tried holding him in the chair. We've brought his iPad but he wants nothing to do with it. Last night I even tried sitting on him and he threw me on the floor (so much for deep pressure). I've tried bribing him with his favorite Skittles (they were also thrown on the floor) and last night I even brought a copy of his current favorite video (hoping he would pick that instead of Shrek) but no luck. Sometimes Ali cuts a swipe or two while he is sitting on the floor, but then he stands up. He moves incredibly fast. Of course, when he is getting ready for school he moves incredibly slow but that is another story. He is so strong he was tipping over the chair! I actually thought the darn things were anchored but apparently not.
I am guessing it is a sensory thing, but it never used to bother him. It is only the last few haircuts that have been a problem.
Of course as soon as it is finished he's fine. I'm covered with hair, shaky and exhausted but he just sits on a bench eating his sucker while I pay. Sigh.
DH suggested that next time we try to cut his hair at home (I already do Joe's and DH's). Who knows how that will turn out? Ali actually does a fantastic job. It is a darn good hair cut -- except for the experience!
The last 3-4 visits have been HELL. There is really no other word to describe them. Alan gets in the car willingly enough and even gets out of the car at the hair salon fine. He goes inside and starts stalling but still nothing major. He has to use the restroom and agonize over which video to watch (but he always selects Shrek) and then he even sits in the chair and gets the cape on with only a yell or two. And then all hell breaks loose.
He stands up and sits down so often and so fast that the poor Ali has to cut his hair a swipe at a time. We've tried holding him in the chair. We've brought his iPad but he wants nothing to do with it. Last night I even tried sitting on him and he threw me on the floor (so much for deep pressure). I've tried bribing him with his favorite Skittles (they were also thrown on the floor) and last night I even brought a copy of his current favorite video (hoping he would pick that instead of Shrek) but no luck. Sometimes Ali cuts a swipe or two while he is sitting on the floor, but then he stands up. He moves incredibly fast. Of course, when he is getting ready for school he moves incredibly slow but that is another story. He is so strong he was tipping over the chair! I actually thought the darn things were anchored but apparently not. I am guessing it is a sensory thing, but it never used to bother him. It is only the last few haircuts that have been a problem.
Of course as soon as it is finished he's fine. I'm covered with hair, shaky and exhausted but he just sits on a bench eating his sucker while I pay. Sigh.DH suggested that next time we try to cut his hair at home (I already do Joe's and DH's). Who knows how that will turn out? Ali actually does a fantastic job. It is a darn good hair cut -- except for the experience!
Thursday, February 13, 2014
Out of the mouths of babes ...
Most parents of autistic kids have a story to tell about how their child(ren) have said a swear word or two or ten -- sometimes daily. I have been incredibly lucky about that because neither of my boyz have ever done that.
Joe goes out of his way to NOT say words that he thinks are bad or inappropriate. I have him read to me daily (and have for years) and for a while whenever the word "God" would appear (not as a noun) he would change it to "gosh" and he would change "damn" to "darn" and he would do it without pausing or stumbling so for the longest time I didn't think any of the books he had chosen had any cuss words. This worked fine in most stories but then he was reading the Percy Jackson series and the kids are at Hoover Dam and they start talking about the "dam snack bar" and how they want a "dam burrito" and he figured out that it was only funny if he actually said the word dam/damn.
For a 19 year old, he is so surprisingly innocent about some things. When he was reading and came across the word "bitch" he would say it without pausing because to him that was a female dog and nothing else. I remember having to teach him what it meant when someone flipped you off. So he is certainly not going to let loose with the F-bomb in the middle of a store. Thank you, Lord!
With Alan, he probably would use curse words if he heard them. He parrots the most surprising things. But even before we knew about their diagnoses, DH and I have worked very hard to not say curse words in front of the boyz. Since DH works in an industrial environment, his "work language" is very different from his home language. And while I might have cussed way more than was appropriate in college, I don't really use that kind of language anymore so the boyz just don't hear a lot of curse words.
I remember a co-worker of mine that had a baby about the same time as I had Joe. We got together once when the boys were about 2 and he was (very proudly) telling a story about how his toddler had said "F&%$" after slamming his finger in the toy box. He proceeded to tell me that his wife "who was a linguistics expert" thought this was great because he was using the word appropriately. I'm sorry, but I don't think it is EVER appropriate for a toddler to say that word -- even if he HAD just slammed his finger in the toy box.
But back to Alan. He is considered mostly non-verbal but always gabbles up a blue streak. When he is eating, when he is climbing, even when he is watching videos and certainly when he is in the bathtub there is a steady stream of sound coming out of his mouth. Most of it is just vocalizations or stims, but every once in a while a word or two is clear.
When he was a toddler he started saying the word "tugboat" in what was very clearly an "I'm angry" occasion and we joked that we would start swearing tug-BOAT (because the emphasis was always on the second syllable) whenever we were angry. At his one school he had different "names" he would call each of his teachers when he was upset. One was usually the tugboat, one got "I'm mad at you" which sounded a lot more like "you a Jew" and the other one got a stream of syllables that sounded just like "you high, you high, you a ho" which provided a lot of fodder for teasing among the gals (who luckily were all very understanding folks!!)
Then came "tattoo". I have never figured out what it was supposed to be, but all of a sudden he started saying the word tattoo. The teachers (and when it happened a second time recently, the bus drivers) asked me if someone if the family got a tattoo. Um, no, I have no idea what he is saying or why.
So last night after bath, the dreaded f-bomb seemed to come out of his mouth in the midst of the gibberish. All I could think was please don't let this be like "tattoo" or "tugboat" which we heard often and clearly. Not only do I not want to explain where it came from to all the relatives and strangers that he will probably offend, but it will most likely send Joe into cardiac arrest.
Joe goes out of his way to NOT say words that he thinks are bad or inappropriate. I have him read to me daily (and have for years) and for a while whenever the word "God" would appear (not as a noun) he would change it to "gosh" and he would change "damn" to "darn" and he would do it without pausing or stumbling so for the longest time I didn't think any of the books he had chosen had any cuss words. This worked fine in most stories but then he was reading the Percy Jackson series and the kids are at Hoover Dam and they start talking about the "dam snack bar" and how they want a "dam burrito" and he figured out that it was only funny if he actually said the word dam/damn.For a 19 year old, he is so surprisingly innocent about some things. When he was reading and came across the word "bitch" he would say it without pausing because to him that was a female dog and nothing else. I remember having to teach him what it meant when someone flipped you off. So he is certainly not going to let loose with the F-bomb in the middle of a store. Thank you, Lord!
With Alan, he probably would use curse words if he heard them. He parrots the most surprising things. But even before we knew about their diagnoses, DH and I have worked very hard to not say curse words in front of the boyz. Since DH works in an industrial environment, his "work language" is very different from his home language. And while I might have cussed way more than was appropriate in college, I don't really use that kind of language anymore so the boyz just don't hear a lot of curse words.
I remember a co-worker of mine that had a baby about the same time as I had Joe. We got together once when the boys were about 2 and he was (very proudly) telling a story about how his toddler had said "F&%$" after slamming his finger in the toy box. He proceeded to tell me that his wife "who was a linguistics expert" thought this was great because he was using the word appropriately. I'm sorry, but I don't think it is EVER appropriate for a toddler to say that word -- even if he HAD just slammed his finger in the toy box.
But back to Alan. He is considered mostly non-verbal but always gabbles up a blue streak. When he is eating, when he is climbing, even when he is watching videos and certainly when he is in the bathtub there is a steady stream of sound coming out of his mouth. Most of it is just vocalizations or stims, but every once in a while a word or two is clear.
When he was a toddler he started saying the word "tugboat" in what was very clearly an "I'm angry" occasion and we joked that we would start swearing tug-BOAT (because the emphasis was always on the second syllable) whenever we were angry. At his one school he had different "names" he would call each of his teachers when he was upset. One was usually the tugboat, one got "I'm mad at you" which sounded a lot more like "you a Jew" and the other one got a stream of syllables that sounded just like "you high, you high, you a ho" which provided a lot of fodder for teasing among the gals (who luckily were all very understanding folks!!)
Then came "tattoo". I have never figured out what it was supposed to be, but all of a sudden he started saying the word tattoo. The teachers (and when it happened a second time recently, the bus drivers) asked me if someone if the family got a tattoo. Um, no, I have no idea what he is saying or why.So last night after bath, the dreaded f-bomb seemed to come out of his mouth in the midst of the gibberish. All I could think was please don't let this be like "tattoo" or "tugboat" which we heard often and clearly. Not only do I not want to explain where it came from to all the relatives and strangers that he will probably offend, but it will most likely send Joe into cardiac arrest.
Tuesday, December 10, 2013
Teaching finances to a HFA
Trying to teach Joe finances continues to be a challenge. Since he drives (and therefore has to put gas in his car) we set him up to have a debit card. I was NOT going to let any child loose with my credit card!
To give credit where it is due, Joe is fantastic about balancing his checkbook. He always records his gas purchases or bank withdrawals perfectly and the only time his checkbook didn't balance it was because he typed the numbers in the calculator wrong.
For car repairs, we usually split the cost. He does work a weekend or two a month and has some income so I don't think having him pay for oil changes or half the price of a new battery is outrageous for the free use of a car!
However, in a continuing effort to help him understand cash flow (as well as financial transactions) I frequently send him out to the store for little things.
We are getting low on Alan's lactose-free milk.
Mom: "Joe, can you run up to the grocery store and pick up some of Alan's milk?"
Joe: "Sure. That is what I'm here for." (I kid you not, that is what he says!)
Joe forgets to tell me we ran out of his favorite mouthwash.
Mom: "You can stop and pick up a few bottles after work tomorrow." (Work = his volunteer positions)
And it is done.
He is remarkably helpful that way. Most of the time he pays in cash and I reimburse him. Sometimes this means I have to make a special trip to the bank to make sure I have enough cash on hand but DH and I figure that as more money travels through Joe's hands he will get a better understanding of how finances work.
This isn't always the most frugal option for us however. One time he bought a name brand where I would buy the generic and his answer was "but I could afford it!" Sigh. He didn't understand that even though he was giving the cashier money, ultimately we were paying for it.
Sometimes it is a pricier errand and he puts it on his debit card. He gives me the receipt and I transfer the money from our account to his. He really doesn't understand how or why this works but I feel better because I don't feel like I am trying to cheat him out of the money he has earned or been given.
Yesterday he went out to pick up a few things and the total came to about $25 so he decided to use his debit card. Fine. Then he figured that since he was low on money, he would get $40 cash back. I was trying to make him understand that either he needed to subtract $40 from his account and I would transfer $25 or he could subtract $65 and I would give him $25 in cash. Yikes. That got confusing even to me!
Then I had what I thought was a brilliant idea. I would explain fiances to him in terms of colored Legos. I told him my account was the red Legos and his was the blue. He gave 5 blue Legos to the store and I gave him 5 red Legos to pay him back and he was still even because the color of the money (Legos) didn't matter.
That actually seemed to make sense to him. But I couldn't figure out how to explain the $40 cash back. Sigh. Really it was easier teaching him the rules of the road for driving using Matchbox cars.
To give credit where it is due, Joe is fantastic about balancing his checkbook. He always records his gas purchases or bank withdrawals perfectly and the only time his checkbook didn't balance it was because he typed the numbers in the calculator wrong.
For car repairs, we usually split the cost. He does work a weekend or two a month and has some income so I don't think having him pay for oil changes or half the price of a new battery is outrageous for the free use of a car!
However, in a continuing effort to help him understand cash flow (as well as financial transactions) I frequently send him out to the store for little things.
We are getting low on Alan's lactose-free milk.Mom: "Joe, can you run up to the grocery store and pick up some of Alan's milk?"
Joe: "Sure. That is what I'm here for." (I kid you not, that is what he says!)
Joe forgets to tell me we ran out of his favorite mouthwash.
Mom: "You can stop and pick up a few bottles after work tomorrow." (Work = his volunteer positions)
And it is done.
He is remarkably helpful that way. Most of the time he pays in cash and I reimburse him. Sometimes this means I have to make a special trip to the bank to make sure I have enough cash on hand but DH and I figure that as more money travels through Joe's hands he will get a better understanding of how finances work.
This isn't always the most frugal option for us however. One time he bought a name brand where I would buy the generic and his answer was "but I could afford it!" Sigh. He didn't understand that even though he was giving the cashier money, ultimately we were paying for it.
Sometimes it is a pricier errand and he puts it on his debit card. He gives me the receipt and I transfer the money from our account to his. He really doesn't understand how or why this works but I feel better because I don't feel like I am trying to cheat him out of the money he has earned or been given.
Yesterday he went out to pick up a few things and the total came to about $25 so he decided to use his debit card. Fine. Then he figured that since he was low on money, he would get $40 cash back. I was trying to make him understand that either he needed to subtract $40 from his account and I would transfer $25 or he could subtract $65 and I would give him $25 in cash. Yikes. That got confusing even to me!Then I had what I thought was a brilliant idea. I would explain fiances to him in terms of colored Legos. I told him my account was the red Legos and his was the blue. He gave 5 blue Legos to the store and I gave him 5 red Legos to pay him back and he was still even because the color of the money (Legos) didn't matter.
That actually seemed to make sense to him. But I couldn't figure out how to explain the $40 cash back. Sigh. Really it was easier teaching him the rules of the road for driving using Matchbox cars.
Thursday, October 24, 2013
The jacket
Some days I just want to cry. Why does everything have to be a battle?
It is getting to be cold where I live and I've been trying to get Alan to wear his jacket to school this week.
Monday and Tuesday I just asked him to put it on and he refused.
Yesterday he got physically aggressive with me (hitting and headbutting me) when I insisted he wear his jacket. Finally I ended up putting the jacket in his backpack for them to try at school. Of course, they didn't go out yesterday and the jacket came home in his backpack.
Yesterday afternoon I had the brilliant idea that if he wanted to go outside after school he would have to wear his jacket. He opted to stay inside and just watch videos.
This morning I tried again. He grabbed his harness for the bus and I told him I wouldn't put it on until after he put on his jacket. So he put the jacket in his backpack.
To add insult to injury, he was wearing his jacket when we picked him up from camp Sunday afternoon and they didn't say anything about him resisting. It obviously fits and there don't seem to be any sensory issues with the material.
I guess if school can't get him to wear it, I just let him be cold? Truthfully, he is such a tough kiddo he probably isn't terribly cold although he was shivering waiting for the bus on Tuesday and Wednesday.
I'm tired, frustrated and out of ideas.
It is getting to be cold where I live and I've been trying to get Alan to wear his jacket to school this week.
Monday and Tuesday I just asked him to put it on and he refused.
Yesterday he got physically aggressive with me (hitting and headbutting me) when I insisted he wear his jacket. Finally I ended up putting the jacket in his backpack for them to try at school. Of course, they didn't go out yesterday and the jacket came home in his backpack.
Yesterday afternoon I had the brilliant idea that if he wanted to go outside after school he would have to wear his jacket. He opted to stay inside and just watch videos.
This morning I tried again. He grabbed his harness for the bus and I told him I wouldn't put it on until after he put on his jacket. So he put the jacket in his backpack.
To add insult to injury, he was wearing his jacket when we picked him up from camp Sunday afternoon and they didn't say anything about him resisting. It obviously fits and there don't seem to be any sensory issues with the material.
I guess if school can't get him to wear it, I just let him be cold? Truthfully, he is such a tough kiddo he probably isn't terribly cold although he was shivering waiting for the bus on Tuesday and Wednesday.
I'm tired, frustrated and out of ideas.
Wednesday, October 23, 2013
Supposed to be a happy occasion ....
Any fan of Monty Python will undoubtedly get the reference in the title, but for those of you who don't find bizarre British humor funny, here is the clip ...
This past weekend was my brother-in-law's stepson's wedding. For all intents and purposes, I consider him my nephew that I only met 6 years ago, and I dearly love his new wife. I have been looking forward to the wedding for some time now.
For a little background, let me say that Joe went to his uncle's second marriage 6 years ago and had a fantastic time. He danced up a storm and charmed the whole room.
This most recent wedding was slightly less successful. Now I won't be telling you "who killed who" (after all, everyone did survive the event!) but it just wasn't as smooth.
This was a camp weekend and we sent Alan so we wouldn't have to worry about a babysitter, but Joe elected not to work and to attend the wedding instead. Hindsight being what it is, DH and I should have "encouraged" Joe to work.
The actual wedding was relatively short and the minister did a fabulous job. Afterwards we went and hung out at my in-laws' house and that was also painless. So what was the problem, you might ask?
The reception.
We are walking in and I said, "I'd really like to get a picture of the three of us." (After all, how often does Joe wear a suit?!?!) Joe's response? "Don't you have enough pictures of me at home?" Okay. He was obviously in "a mood". He finally agreed to take ONE picture. Unfortunately, I put my arm around him. I was told in no uncertain terms to NOT do that.Sigh.
Then there was the food. Joe is nowhere close to Alan when it comes to being a picky eater, but there are certain things he will not touch and one of them is cheese (unless it is Parmesan cheese or on a pizza). Even though he loves potatoes (and has even been known to eat potatoes with some cheese hidden in their depths once or twice) he overheard my nieces discussing how there was cheese in the potatoes. It wasn't happening. Then there was the pasta. The kid LOVES pasta and it was just Pasta Alfredo with broccoli. He always eats "pasta with white sauce" at home and he likes broccoli (it is one of the few veggies that he usually likes) but oh, no, not combined. Even when I ended up giving him my leftover roll at the end, he wiped the little dab of Alfredo sauce on his napkin before eating it. Sigh.
At this point I left our table to go talk with some of DH's cousins. DH did point out that maybe I was being difficult too. Probably. I have often said that the reason Joe and I spark so much is that we are so similar in personality but so different in tastes.
DH did ask Joe the next day why he even wanted to go when he seemed so determined to not have a good time. Joe's response? "Well it had been a while since I went to a wedding."
And it will probably be a VERY long time before he goes to another one!!!!
Tuesday, September 10, 2013
I never wanted autism
I never wanted autism.
There I've said it.
Now I've probably pissed off any adult autistics that actually read my blog and possibly some of the parents.
Still it is true. When I was pregnant I didn't think "I hope my older son has a hard time making friends. I really hope my younger son still talks in single words at 15 years old. I want a family that can't go over to the grandparents' houses because the younger one cannot follow simple rules. I want to spend every family gathering taking turns with DH sitting outside and watching the younger son climb trees. I want to still be explaining basic idioms to my 18 year old. I want to stop taking family vacations when Alan starts having meltdowns on the beach. I want to stop certain fun family traditions because my 14 year old won't go out in the dark."
Does anyone think these things?
But as soon as I say "I hate autism" people jump all over me.
I really find it hard to believe that anyone wants this life. Don't get me wrong -- if they ever would find a cure, I would not force ANYONE to take it. I would discuss the options with Joe at length. I think he would chose to take it, but if he said "no" that would be that. Of course so much would depend on side effects that even discussing the possibility is sort of foolish.
But I get so frustrated by the "neuro-diversity" crowd that thinks we do not need a cure. Maybe they don't. But I do. I want to unlock the mystery inside of Alan's brain. He is so cuddly and affectionate and has such an infectious giggle but he also has a blood curdling shriek that I don't understand. I try. I come up with all sorts of interpretations, but I just do not know what he wants some days.
Trust me, I get that life isn't fair. DH and I regularly joke about
that. Most of the time, I laugh about our life. After all, it is
inherently funny to watch some of Alan's climbing activities. But when
he is wrecking our house and trying to climb on the electrical fixtures
and the heater because we aren't letting him outside to climb, it is a
little less funny. When he was going through his "poop smearing" phase and we were cleaning his room at least every 24 hours, that was definitely less funny.
I am terrified quite regularly when I think of the future. I have a child that will need life long care. What happens when I am not around to provide it? My older son cannot care for my younger one. Both DH and I are the youngest in our respective families. Th
at means all aunts and uncles are older than us. What happens when Alan is a 30 year old adult and everyone around him is 60+? He can already overpower me and he is still (marginally) smaller than me.
When I said that Kelli Stapleton did the wrong thing but I wanted to understand it, I was criticized. Someone said that anyone that thought like that didn't want an autistic child. That in fact, they wanted a neuro-typical kid. Um, yes. Actually I do want a neuro-typical child. Two of them would be nice. I love my boys with all my heart and soul, but I don't want them to have all the struggles they do. If some people believe this makes me a bad parent, then so be it.
I've never claimed to be perfect. Far from it, as a matter of fact! The popular expression is "love the sinner, hate the sin." Well, I love my autistic kids but I hate their autism. That is just the way it is.
There I've said it.
Now I've probably pissed off any adult autistics that actually read my blog and possibly some of the parents.
Still it is true. When I was pregnant I didn't think "I hope my older son has a hard time making friends. I really hope my younger son still talks in single words at 15 years old. I want a family that can't go over to the grandparents' houses because the younger one cannot follow simple rules. I want to spend every family gathering taking turns with DH sitting outside and watching the younger son climb trees. I want to still be explaining basic idioms to my 18 year old. I want to stop taking family vacations when Alan starts having meltdowns on the beach. I want to stop certain fun family traditions because my 14 year old won't go out in the dark."
Does anyone think these things?
But as soon as I say "I hate autism" people jump all over me.
I really find it hard to believe that anyone wants this life. Don't get me wrong -- if they ever would find a cure, I would not force ANYONE to take it. I would discuss the options with Joe at length. I think he would chose to take it, but if he said "no" that would be that. Of course so much would depend on side effects that even discussing the possibility is sort of foolish.
But I get so frustrated by the "neuro-diversity" crowd that thinks we do not need a cure. Maybe they don't. But I do. I want to unlock the mystery inside of Alan's brain. He is so cuddly and affectionate and has such an infectious giggle but he also has a blood curdling shriek that I don't understand. I try. I come up with all sorts of interpretations, but I just do not know what he wants some days.
Trust me, I get that life isn't fair. DH and I regularly joke about
that. Most of the time, I laugh about our life. After all, it is
inherently funny to watch some of Alan's climbing activities. But when
he is wrecking our house and trying to climb on the electrical fixtures
and the heater because we aren't letting him outside to climb, it is a
little less funny. When he was going through his "poop smearing" phase and we were cleaning his room at least every 24 hours, that was definitely less funny.I am terrified quite regularly when I think of the future. I have a child that will need life long care. What happens when I am not around to provide it? My older son cannot care for my younger one. Both DH and I are the youngest in our respective families. Th
at means all aunts and uncles are older than us. What happens when Alan is a 30 year old adult and everyone around him is 60+? He can already overpower me and he is still (marginally) smaller than me. When I said that Kelli Stapleton did the wrong thing but I wanted to understand it, I was criticized. Someone said that anyone that thought like that didn't want an autistic child. That in fact, they wanted a neuro-typical kid. Um, yes. Actually I do want a neuro-typical child. Two of them would be nice. I love my boys with all my heart and soul, but I don't want them to have all the struggles they do. If some people believe this makes me a bad parent, then so be it.
I've never claimed to be perfect. Far from it, as a matter of fact! The popular expression is "love the sinner, hate the sin." Well, I love my autistic kids but I hate their autism. That is just the way it is.
Thursday, September 5, 2013
Not even a small pebble ...
They say people in glass houses shouldn't throw stones, but right now so many of them are still chucking boulders around it isn't funny.
Just a few short days ago, a fellow Autism parent snapped. Was it right? Hell no. Could it happen again? Most likely. To me? God, I hope not. To someone else I know? Maybe.
There are so many questions and so many possibilities to our lives and those of our children and yet so many people (especially special needs parents) are still so trapped. When Alex's mother stabbed him repeatedly earlier this year, so many people were so quick to condemn her. How can any mother kill her child? Others tried to be understanding. She was just dealing with so much. In turn, these people were vilified by the autism community. There is no excuse for killing your child.
No excuse perhaps, but sometimes people snap.
The statement has been made over and over again, "God never gives you more than you can handle." I happen to disagree with this immensely. Mental illness throws everything out the window.
If a typical teenaged star athlete commits suicide, does everyone instantly label the parent as bad? Maybe. But most likely there was some mental illness that caused the child to lose hope and lose the will to live. If a mother (or father) of a typical child kills him/her there is instant horror and outrage. How could he/she be so selfish? But when a parent arranges a murder-suicide the first assumption is usually (I would hope) "what brought them to this point?" After all when you try to take your own life as well it isn't so much selfishness as despair.
So many people have never dealt with the intense violence that was a part of Kelli and Issy's life. Many have never dealt with the crushing choices facing them. How about living 2.5 hours away from your home and the rest of your family in order to have your child go to the best school? I am willing to bet not many people could take that one on the chin and keep going as though nothing happened.
Autistic people will say that if you try to justify a crime like this you diminish an adult autistic's life. I think it is safe to say that Issy's life (and Alex's) were already diminished. Does that make it right? Hell no. Does that make it sad? Immeasurably.
So before all the haters out there jump on me for excusing or justifying this crime, let me be clear. I AM NOT! I am trying to understand. I just want to keep this from ever happening again. I wish I had answers.
Maybe this hit me especially hard because both these children were 14 and my Alan just turned 15.
All I know is I'm not throwing any stones at Kelli ... not even a small pebble.
Just a few short days ago, a fellow Autism parent snapped. Was it right? Hell no. Could it happen again? Most likely. To me? God, I hope not. To someone else I know? Maybe.
There are so many questions and so many possibilities to our lives and those of our children and yet so many people (especially special needs parents) are still so trapped. When Alex's mother stabbed him repeatedly earlier this year, so many people were so quick to condemn her. How can any mother kill her child? Others tried to be understanding. She was just dealing with so much. In turn, these people were vilified by the autism community. There is no excuse for killing your child.
No excuse perhaps, but sometimes people snap.
The statement has been made over and over again, "God never gives you more than you can handle." I happen to disagree with this immensely. Mental illness throws everything out the window.
If a typical teenaged star athlete commits suicide, does everyone instantly label the parent as bad? Maybe. But most likely there was some mental illness that caused the child to lose hope and lose the will to live. If a mother (or father) of a typical child kills him/her there is instant horror and outrage. How could he/she be so selfish? But when a parent arranges a murder-suicide the first assumption is usually (I would hope) "what brought them to this point?" After all when you try to take your own life as well it isn't so much selfishness as despair.
So many people have never dealt with the intense violence that was a part of Kelli and Issy's life. Many have never dealt with the crushing choices facing them. How about living 2.5 hours away from your home and the rest of your family in order to have your child go to the best school? I am willing to bet not many people could take that one on the chin and keep going as though nothing happened.
Autistic people will say that if you try to justify a crime like this you diminish an adult autistic's life. I think it is safe to say that Issy's life (and Alex's) were already diminished. Does that make it right? Hell no. Does that make it sad? Immeasurably.
So before all the haters out there jump on me for excusing or justifying this crime, let me be clear. I AM NOT! I am trying to understand. I just want to keep this from ever happening again. I wish I had answers.
Maybe this hit me especially hard because both these children were 14 and my Alan just turned 15.
All I know is I'm not throwing any stones at Kelli ... not even a small pebble.
Wednesday, August 28, 2013
Why me?
Yesterday I had one of those "Why me?" moments. Every parent of a special needs kiddo has had them. Heck, I suspect every parent has had them!
That moment when you think, "Why does this crap always happen to me?"
Obviously, Alan broke his arm a little over two weeks ago. Alan is a climber. We've kept him inside as much as possible since he had the cast put on in an effort to minimize his climbing.
Yesterday afternoon I heard a loud crash from the basement. He had attempted to climb the shelves in our storage room. But those shelves were not meant to hold up a 170 pound kid.
Over the years, he has climbed so many things it isn't funny. DH has covered many of our pipes and wires in our mostly unfinished basement with plywood in an effort to protect them.
We have installed grip bars near many of Alan's favorite climbing spots in the basement. For years, we kept him out of the storage room and the work room with keyed locks but lately he just wasn't climbing where he wasn't supposed to climb ... much. So we started leaving the doors unlocked.
Then he broke his arm and we started keeping him inside. Apparently those sensory needs are building and he's started climbing the walls ... literally.
When I was growing up, my mom used to say, "I'd say I was paying for the sins of my youth, but I don't remember having that much fun."
Well, unfortunately, I did have that much fun. And I'm paying ...
That moment when you think, "Why does this crap always happen to me?"
Obviously, Alan broke his arm a little over two weeks ago. Alan is a climber. We've kept him inside as much as possible since he had the cast put on in an effort to minimize his climbing.Yesterday afternoon I heard a loud crash from the basement. He had attempted to climb the shelves in our storage room. But those shelves were not meant to hold up a 170 pound kid.
Over the years, he has climbed so many things it isn't funny. DH has covered many of our pipes and wires in our mostly unfinished basement with plywood in an effort to protect them.
We have installed grip bars near many of Alan's favorite climbing spots in the basement. For years, we kept him out of the storage room and the work room with keyed locks but lately he just wasn't climbing where he wasn't supposed to climb ... much. So we started leaving the doors unlocked.
Then he broke his arm and we started keeping him inside. Apparently those sensory needs are building and he's started climbing the walls ... literally.
When I was growing up, my mom used to say, "I'd say I was paying for the sins of my youth, but I don't remember having that much fun."
Well, unfortunately, I did have that much fun. And I'm paying ...
Tuesday, August 13, 2013
Back to school ... Alan style!
Like so many things he does, Alan did his first day of high school in his own signature style. He started the day by coming down the stairs in his usual fashion and getting on the bus like any other kid. He apparently had a fairly good day at his new school other than not liking that lunch was later than usual.Later that evening, he was climbing (as usual) in his favorite cherry tree and he jumped out (as usual) and apparently landed bad (most unusual). He started screaming and crying and came inside. We checked him out and DH noticed that his wrists felt different. On his right wrist we could easily feel both bones but on the left, we could only feel one. He was also allowing us (even encouraging us) to put pressure on his left wrist.
So about 7:40 last night we packed up and headed to the local ER.
Once again, this hospital was pretty fantastic with only a few mishaps. They got us out of the waiting room in record time and into the pediatric wing. They brought in a cool sensory light machine that actually distracted him for a little while. They went and found trains when we said he liked them. They even got me some pillows so I could elevate my foot.Although Alan was NOT happy about being there but we did get him X-rayed after a little struggle and the ER doc said he had a 30 degree angled break in the main bone of the arm. We needed to sedate him to set the bone and first we tried the liquid sedative that he took for his MRI, but we could not convince him to drink it this time. He fell asleep on his own about 9:45 and the nurses came in to give him his sedative shot about 10:15 but he freaked out and we had a huge wrestling match and the sedative didn't take.
Of course, as DH pointed out, he had learned not to fall asleep at the hospital so he was fighting it pretty hard. They came up with a second medication (at this point there are so many meds in his system they had to be super careful about drug interactions) and were planning to come in with another one. We weren't sure how late we were going to be there at this point so I called my sister to come get me (I can't drive because of my foot) and I left a little before midnight.
They came in to give him the second sedative and this seemed to work. Then they took another X-ray because one of the nurses apparently heard a "grind and pop" during the wrestling match and they were worried we had done more damage. Turns out we set the bone perfectly. (What is that saying about God protecting fools and small children?)
The orthopedist opted to do an above the elbow cast because otherwise we figured he would pull off a wrist only cast like an uncomfortable sleeve. Before the orthopedist came in, the nurses told us that it would probably be a splint and he'd get his cast in a couple of days after the swelling went down. Luckily there was no major swelling and he came home with a plaster cast. He can't get it wet. DH could have opted for a fiberglass cast because those can get wet but they can also be picked apart according to the doctor which would be bad with Alan's OCD (the consummate picker!) so he opted for the plaster.
Alan goes back on Monday for another X-ray but right now the plan is to have the cast stay on 4 weeks. Of course, he is supposed to go to the sedation dentist in 5.5 weeks so that might be taken into consideration.
DH and Alan finally got home about 1:30 am and we all crashed as best we could. Alan does not like the cast and pulling at the soft edges a lot at first. Of
course this will leave the rough plaster exposed so we are trying to
stop him. He doesn't like the sling although that would probably take
some of the weight off his arm. He is getting much better although he
did fall off his chair in the kitchen when he reached down to pick up a
dropped item and the weight of the cast upset his balance.And that was how we spent the first day of high school ... Alan style!
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.
Sunday, July 21, 2013
Truth in Advertising
I got Alan his first Autism t-shirt when he was pretty little. We were going on vacation and I wanted a shirt for him to wear when we were in unfamiliar territory that identified him as having autism so that people could understand why he was acting the way he was acting!
We were so happy with people's reactions, that we came home and ordered 3 or 4 more. We've added several a couple times of year since then and prefer to dress him in them on the weekends. We just got a new batch last week and I can't figure out my favorite. I love them all!
Sometimes they just say "Autism Awareness" and sometimes they are more humorous. Over the years we have had:
But my all time favorite is:
Thank goodness for a sense of humor!
We were so happy with people's reactions, that we came home and ordered 3 or 4 more. We've added several a couple times of year since then and prefer to dress him in them on the weekends. We just got a new batch last week and I can't figure out my favorite. I love them all!
Sometimes they just say "Autism Awareness" and sometimes they are more humorous. Over the years we have had:
- I have autism and I am a good boy. My mom and dad are doing the best they can. Friendly smiles are appreciated, parenting advice is NOT.
- Why be normal?
- I'm not a brat, my genes just don't fit.
- I have autism. Thanks for being patient with me.
- Autism: Seeing the world from a different angle.
- Staring at me will not cure my autism.
- Just because I can't talk doesn't mean I don't understand.
- I have autism. Please be nice to my mom.
- Warning: Autism meltdown probability high.
- I'm not rude, hyper or spoiled. I'm autistic.
- Stare if you must. I'm ignoring you anyway.
- Eye contact is overrated.
- I have autism and I'm ignoring you.
- Autism: Being different can be a good thing.
- I have autism and I think you are weird, too.
But my all time favorite is:
- Keep staring and it might cure my autism. Then we can work on YOUR social skills.
Thank goodness for a sense of humor!
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?!?!?!
Thursday, June 6, 2013
Why I think it is okay to hate autism ...
If you just read that title and are all set to argue, you might be autistic, but please hear me out.
Most people who say they hate autism (and yes, I am sometimes one of them) don't see autism as synonymous with autistics any more than depression is synonymous with the depressed. I have depression and I HATE it. I have two children with autism and sometimes I hate autism. I do not and could never hate them.
Most autistics say that it is okay to hate the "co-morbids" (the nasty little disorders that frequently co-exist with autism) but not the autism itself. OK, let's take a closer look at that. In our family, my older son, Joe, is fairly high functioning, verbal, usually helpful and yet has been known to have meltdowns that can peel paint. My younger son, Alan, is frequently violent, OCD and mostly non-verbal. Both have depression on occasion. OCD, violence, and depression are all considered co-morbids. And according to autistics, it is okay to hate all of those things.
So, why is it okay to hate the co-morbids but not the core? While
Alan's core disorder is autism, Alan IS NOT autism!!!! He is so much
more. He is giggles and cuddles and adorable blue eyes. He is incredibly flexible and could probably be a gymnast if he didn't have autism and could follow directions.
The autistic point of view (I believe) is that since it is an operating system they are synonymous. The person cannot be separated from the disorder. I suppose they are saying it is like race. How can you separate the race from the person? You can't. So while it might be okay to say "I hate being black, white, Asian or Latino." it IS NEVER okay to say "I hate blacks, whites, Asians or Latinos."
And yet, I think that telling people not to hate autism can be very alienating to families who are struggling just to get through the day living with autism. Cleaning up poop and vomit, meltdowns, anxiety attacks, social ridicule, sensory induced pain -- these are all things that are intrinsically difficult. I can't imaging anyone cleaning up vomit or watching their child get called names for being different having a lovely warm fuzzy feeling about autism. Some families are in the trenches with these things and they can't see beyond their current, overwhelming, sometimes painful circumstances. These are some of the families who probably say they hate autism.
If an autistic were to tell me that he hated neurotypicality, I would not take that to mean that they hated me. I would take that to mean that I confused them and/or they didn't understand me. Is he a better person if he spells out that important difference? Perhaps. But in any case rather than being a huge fight between autism parents and autistics, the whole conflict should probably be put down to a difference in communication.
Truthfully, I think most people who say they hate autism are really saying it confuses, scares or overwhelms them. They are using what I would call a neurotypical shorthand. If autism is an operating system, I would have to say it is an Apple. I am a PC/Android person through and through. Anyone who knows me well has heard me complain of Apple products. As an operating system, it confuses me. So yes, I have said I hate Apple on occasion! That said, I love both of Alan's iPads for very different reasons. His school issued one is turning out to be a fantastic communication tool and the one we purchased is a favorite source of entertainment. So I may hate Apples, but I don't hate Alan's iPads.
I have heard more than a few people say that they hate their hair (usually when it is curly). I really think what they are saying is that it doesn't do what it is "supposed" to do (hmm, that also sounds a bit like our kids). So if it is okay to hate part of you and wish it could change, why is autism different?
If my older son were to tell me that he hated his little brother, I would jump all over that. If he were to tell me that he hated Alan's autism, I would completely understand that he meant that Alan's autism frustrated, scared, overwhelmed and/or annoyed him. Alan's autism affects everything about our family -- our ability to go out to dinner, over to Grandma and Grandpa's house, vacations and even the grocery store -- and so we all are inconvenienced by autism and I do think it is okay if Joe would hate Alan's autism but not hate Alan. In our house autism is an inanimate object not a person.
He doesn't ever say it, but sometimes I think Joe hates his own autism. He hates that it is hard for him to make and keep friends because he perseverates on bizarre topics. He hates that he does things so much differently than his peers. That said, the kid has incredible self esteem! So I do not believe that hating (or being inconvenienced or annoyed) by his autism or by his brother's is damaging to his self esteem in the least.
We
live in a world where we fiercely defend freedom in so many realms. It does seem a little bit unusual to me that we are also quick to
condemn people who don't feel the same way we do about autism. Am I a
better person if I love autism than if I
am overwhelmed and confused by it? Regardless of how you feel about autism,
all people deserve respect. Perhaps instead of getting angry at, or
feeling sorry for, people who hate autism we should attempt to
understand why they feel that way. These
families don't need condemnation. They need support and understanding.
In many ways it is like telling a drowning person not to hate the water. In their overwhelmed state, that kind of choice is not really possible for them. But, lift that person out of the water and into a boat and then they can see how beautiful the water is. They can see it in a different light than they did before and may realize that there is a beauty and majestic uniqueness about their particular lake or ocean.
We aren't going to get very far spreading the message of autism acceptance if we judge those who don't agree with our viewpoints. Instead, if we work to understand and support others, we may find that we don't have so many differences after all.
Most people who say they hate autism (and yes, I am sometimes one of them) don't see autism as synonymous with autistics any more than depression is synonymous with the depressed. I have depression and I HATE it. I have two children with autism and sometimes I hate autism. I do not and could never hate them.
Most autistics say that it is okay to hate the "co-morbids" (the nasty little disorders that frequently co-exist with autism) but not the autism itself. OK, let's take a closer look at that. In our family, my older son, Joe, is fairly high functioning, verbal, usually helpful and yet has been known to have meltdowns that can peel paint. My younger son, Alan, is frequently violent, OCD and mostly non-verbal. Both have depression on occasion. OCD, violence, and depression are all considered co-morbids. And according to autistics, it is okay to hate all of those things.
So, why is it okay to hate the co-morbids but not the core? While
Alan's core disorder is autism, Alan IS NOT autism!!!! He is so much
more. He is giggles and cuddles and adorable blue eyes. He is incredibly flexible and could probably be a gymnast if he didn't have autism and could follow directions.The autistic point of view (I believe) is that since it is an operating system they are synonymous. The person cannot be separated from the disorder. I suppose they are saying it is like race. How can you separate the race from the person? You can't. So while it might be okay to say "I hate being black, white, Asian or Latino." it IS NEVER okay to say "I hate blacks, whites, Asians or Latinos."
And yet, I think that telling people not to hate autism can be very alienating to families who are struggling just to get through the day living with autism. Cleaning up poop and vomit, meltdowns, anxiety attacks, social ridicule, sensory induced pain -- these are all things that are intrinsically difficult. I can't imaging anyone cleaning up vomit or watching their child get called names for being different having a lovely warm fuzzy feeling about autism. Some families are in the trenches with these things and they can't see beyond their current, overwhelming, sometimes painful circumstances. These are some of the families who probably say they hate autism.
If an autistic were to tell me that he hated neurotypicality, I would not take that to mean that they hated me. I would take that to mean that I confused them and/or they didn't understand me. Is he a better person if he spells out that important difference? Perhaps. But in any case rather than being a huge fight between autism parents and autistics, the whole conflict should probably be put down to a difference in communication.
Truthfully, I think most people who say they hate autism are really saying it confuses, scares or overwhelms them. They are using what I would call a neurotypical shorthand. If autism is an operating system, I would have to say it is an Apple. I am a PC/Android person through and through. Anyone who knows me well has heard me complain of Apple products. As an operating system, it confuses me. So yes, I have said I hate Apple on occasion! That said, I love both of Alan's iPads for very different reasons. His school issued one is turning out to be a fantastic communication tool and the one we purchased is a favorite source of entertainment. So I may hate Apples, but I don't hate Alan's iPads.
I have heard more than a few people say that they hate their hair (usually when it is curly). I really think what they are saying is that it doesn't do what it is "supposed" to do (hmm, that also sounds a bit like our kids). So if it is okay to hate part of you and wish it could change, why is autism different?
If my older son were to tell me that he hated his little brother, I would jump all over that. If he were to tell me that he hated Alan's autism, I would completely understand that he meant that Alan's autism frustrated, scared, overwhelmed and/or annoyed him. Alan's autism affects everything about our family -- our ability to go out to dinner, over to Grandma and Grandpa's house, vacations and even the grocery store -- and so we all are inconvenienced by autism and I do think it is okay if Joe would hate Alan's autism but not hate Alan. In our house autism is an inanimate object not a person.
He doesn't ever say it, but sometimes I think Joe hates his own autism. He hates that it is hard for him to make and keep friends because he perseverates on bizarre topics. He hates that he does things so much differently than his peers. That said, the kid has incredible self esteem! So I do not believe that hating (or being inconvenienced or annoyed) by his autism or by his brother's is damaging to his self esteem in the least.
We
live in a world where we fiercely defend freedom in so many realms. It does seem a little bit unusual to me that we are also quick to
condemn people who don't feel the same way we do about autism. Am I a
better person if I love autism than if I
am overwhelmed and confused by it? Regardless of how you feel about autism,
all people deserve respect. Perhaps instead of getting angry at, or
feeling sorry for, people who hate autism we should attempt to
understand why they feel that way. These
families don't need condemnation. They need support and understanding. In many ways it is like telling a drowning person not to hate the water. In their overwhelmed state, that kind of choice is not really possible for them. But, lift that person out of the water and into a boat and then they can see how beautiful the water is. They can see it in a different light than they did before and may realize that there is a beauty and majestic uniqueness about their particular lake or ocean.
We aren't going to get very far spreading the message of autism acceptance if we judge those who don't agree with our viewpoints. Instead, if we work to understand and support others, we may find that we don't have so many differences after all.
Thursday, May 16, 2013
The Debate
Sometimes I feel like I have both sides of a debate team in my head. Lest you think I am schizophrenic (which is a possibility says team B) I will explain what I mean.
Team A: Life is so much tougher when you have autistic kids. There are endless meetings with schools, teachers, doctors and therapists.
Team B: Have you talked to your friends with typical kids? How many games, practices and club meetings do they have in average week?
Team A: 1 Team B: 1
Team A: When I take my child to the pool, they never play with the other kids.
Team B: Have you seen how annoying other kids can be? Are you really sad that they aren't playing with those jerks?
Team A: 1 Team B: 2
Team A: Every time I tell someone my child has autism, they look at me with pity.
Team B: If it wasn't important why did you bring it up?
Team A: 2 Team B: 3
Team A: What is my 18 year old going to do now that he has graduated? He doesn't have a job and he isn't ready to go away to college.
Team B: Look at all these parents whose 18 year old kids are going to college. Do you think any of them are "ready"? Do you remember how much trouble you got into at 18? Maybe it isn't so bad having him still at home.
Team A: 2 Team B: 4
Team A: We still have to get ababysitter respite provider every time we want to go out for a date and we have two teenagers.
Team B: Would you want to leave two "typical" teenage boys alone in a house when you go out? How many girls could they get pregnant and how much liquor could they consume?
Team A: 2 Team B: 5
Team A: My kids are rarely invited to birthday parties and they've never been on a sleepover.
Team B: Think of all the money you haven't had to spend on other kids' birthday gifts, all the time and money that you haven't had to spend planning parties and all the useless things you haven't been given at your own kids' parties. You also haven't had to host any other kids.
Team A: 2 Team B: 6
Team A: Everyone has a story about someone they know who was "cured" by doing something (usually bizarre).
Team B: Yep, they do.
Team A: 3 Team B: 6
Team A: My boys do not interact with each other very much.
Team B: You've heard stories from the hubby about how teenage boys "interact" -- is it really so bad that older one isn't giving the neighbor hints on the best way to beat up his little brother?
Team A: 3 Team B: 7
Team A: We aren't able to go to many family celebrations because of Alan climbing on things and getting into trouble.
Team B: And haven't you also used that as an excuse to get out of things you didn't want to do?
Team A: 3 Team B: 8
Team A: We haven't taken Alan to church since he was 3 and therefore have to go to two separate services every weekend.
Team B: OK, that is a pain in the butt no two ways about it.
Team A: 4 Team B: 8
Team A: There is so much conflict in the autism world. The vaccination debate, the GF/CF folks, acceptance vs. awareness, is Autism Speaks the anti-Christ, should we call them people with autism or autistics ... I can go on and on.
Team B: Parenting debates exist everywhere. Do you have to defend whether or not you breastfed, let your child sleep in your bed or made him cry it out, did attachment parenting, or have ever spanked?
Team A: Autism parents don't care about little things like that.
Team A: 4 Team B: 9
Hmm, maybe I'll keep my strange little family and our bizarre life. After all, it could be worse. I could have two typical kids.
Team A: Life is so much tougher when you have autistic kids. There are endless meetings with schools, teachers, doctors and therapists.
Team B: Have you talked to your friends with typical kids? How many games, practices and club meetings do they have in average week?
Team A: 1 Team B: 1
Team A: When I take my child to the pool, they never play with the other kids.
Team B: Have you seen how annoying other kids can be? Are you really sad that they aren't playing with those jerks?
Team A: 1 Team B: 2
Team A: Every time I tell someone my child has autism, they look at me with pity.
Team B: If it wasn't important why did you bring it up?
Team A: 2 Team B: 3
Team A: What is my 18 year old going to do now that he has graduated? He doesn't have a job and he isn't ready to go away to college.
Team B: Look at all these parents whose 18 year old kids are going to college. Do you think any of them are "ready"? Do you remember how much trouble you got into at 18? Maybe it isn't so bad having him still at home.
Team A: 2 Team B: 4
Team A: We still have to get a
Team B: Would you want to leave two "typical" teenage boys alone in a house when you go out? How many girls could they get pregnant and how much liquor could they consume?
Team A: 2 Team B: 5
Team A: My kids are rarely invited to birthday parties and they've never been on a sleepover.
Team B: Think of all the money you haven't had to spend on other kids' birthday gifts, all the time and money that you haven't had to spend planning parties and all the useless things you haven't been given at your own kids' parties. You also haven't had to host any other kids.
Team A: 2 Team B: 6
Team A: Everyone has a story about someone they know who was "cured" by doing something (usually bizarre).Team B: Yep, they do.
Team A: 3 Team B: 6
Team A: My boys do not interact with each other very much.
Team B: You've heard stories from the hubby about how teenage boys "interact" -- is it really so bad that older one isn't giving the neighbor hints on the best way to beat up his little brother?
Team A: 3 Team B: 7
Team A: We aren't able to go to many family celebrations because of Alan climbing on things and getting into trouble.
Team B: And haven't you also used that as an excuse to get out of things you didn't want to do?
Team A: 3 Team B: 8
Team A: We haven't taken Alan to church since he was 3 and therefore have to go to two separate services every weekend.
Team B: OK, that is a pain in the butt no two ways about it.
Team A: 4 Team B: 8
Team A: There is so much conflict in the autism world. The vaccination debate, the GF/CF folks, acceptance vs. awareness, is Autism Speaks the anti-Christ, should we call them people with autism or autistics ... I can go on and on.
Team B: Parenting debates exist everywhere. Do you have to defend whether or not you breastfed, let your child sleep in your bed or made him cry it out, did attachment parenting, or have ever spanked?
Team A: Autism parents don't care about little things like that.
Team A: 4 Team B: 9
Hmm, maybe I'll keep my strange little family and our bizarre life. After all, it could be worse. I could have two typical kids.
Friday, May 10, 2013
Trying to look on the bright side
Today is Joe's last day of high school. When I was younger and so much more naive I used to dream about this day. "If only I can get him to graduate then _________" (fill in the blank). Now that I am older and wiser, I realize this is just another twist in the road.
A few months back, Joe was accepted into the VR program at his school. This is a program that aims to get special needs graduates employed after high school. They take them on several job assessments and the goal (as I understood it) was to find a company where Joe wanted to work and could be successful as well as a company that wanted Joe.
So why, did the assessor take him to places that he didn't want to work? Why did she spend so much time telling me why the employer wouldn't want Joe? If the employer is that difficult to work for, why is she bringing potential special needs employees there?
Most of her complaints against Joe were rather minor. She tells him to put some cans on a shelf. He says "Are you sure that is where they go?" and she thinks he is undermining her authority. Really? Has she ever talked to an autistic person in her life?? Joe questions everything. That is just the way he is.
She claimed he was too negative. This is a legitimate claim against many on the spectrum. But not Joe.
This is the child that when my sister's cat ran away, he tried to console my sister that she still has another cat. When I'm running late and am wearing my workout clothes, he tells me that "at least you had a chance to take a shower" when actually I didn't. When my car was totaled it was "at least we still have two other cars." This young man could be the poster child for looking on the bright side.
To the age old question of "Is the glass half full or half empty?" Joe would probably respond "The important thing is that you have a glass!"
So now I am facing graduation with an unemployed 18 year old. I am terrified. I am sure he will eventually work somewhere although hell will freeze over before I let it be the sheltered workshop she thinks he needs. The kid drives for crying out loud. Okay, deep breath mama bear.
At least I have Joe.
A few months back, Joe was accepted into the VR program at his school. This is a program that aims to get special needs graduates employed after high school. They take them on several job assessments and the goal (as I understood it) was to find a company where Joe wanted to work and could be successful as well as a company that wanted Joe.
So why, did the assessor take him to places that he didn't want to work? Why did she spend so much time telling me why the employer wouldn't want Joe? If the employer is that difficult to work for, why is she bringing potential special needs employees there?
Most of her complaints against Joe were rather minor. She tells him to put some cans on a shelf. He says "Are you sure that is where they go?" and she thinks he is undermining her authority. Really? Has she ever talked to an autistic person in her life?? Joe questions everything. That is just the way he is.
She claimed he was too negative. This is a legitimate claim against many on the spectrum. But not Joe.
This is the child that when my sister's cat ran away, he tried to console my sister that she still has another cat. When I'm running late and am wearing my workout clothes, he tells me that "at least you had a chance to take a shower" when actually I didn't. When my car was totaled it was "at least we still have two other cars." This young man could be the poster child for looking on the bright side.To the age old question of "Is the glass half full or half empty?" Joe would probably respond "The important thing is that you have a glass!"
So now I am facing graduation with an unemployed 18 year old. I am terrified. I am sure he will eventually work somewhere although hell will freeze over before I let it be the sheltered workshop she thinks he needs. The kid drives for crying out loud. Okay, deep breath mama bear.
At least I have Joe.
Tuesday, April 30, 2013
Joe as "Miss Manners"
We went out to lunch as a family to a sit down restaurant on Sunday. This isn't something we do often. We go grab fast food and we are carryout pros, but all four of us going out to eat is just something that doesn't usually happen.
We didn't go anywhere fancy -- just a sports bar/restaurant that we had tried before. There were no local games on TV and the place was pretty much empty which is how we prefer it.
Alan was doing his usual "happy noises", we had gotten our food and it was turning into an enjoyable outing. Alan decided he had eaten all the fries he was going to for this visit and so he began his "clean up" which is basically him transferring his fries to another plate so he can get the last bit of salt off his plate. This is usually accompanied by a "no" or two.
Joe sighed (that exasperated sigh that only a teenager can do) and said "He really shouldn't talk that loud!" Really? This from the kid that stage whispers loud enough in church for people 3 rows away from us to contribute to the conversation? (OK, not really, but he isn't quiet by any stretch of the imagination!)
Alan's "no" wasn't that loud and we were in a noisy place. We just pointed out to Joe that Alan doesn't have a lot of words and he wasn't yelling and we thought it was fine.
"Well, I just don't think he should do that. It is sort of rude." OK. The king of etiquette has spoken.
Finally it is time to leave and we are collecting our things and Joe says in his normal dulcet tone, "Just a second I have some ear wax I need to clean out of my ear."
Clearly he and his brother are subject to different rules.
We didn't go anywhere fancy -- just a sports bar/restaurant that we had tried before. There were no local games on TV and the place was pretty much empty which is how we prefer it.
Alan was doing his usual "happy noises", we had gotten our food and it was turning into an enjoyable outing. Alan decided he had eaten all the fries he was going to for this visit and so he began his "clean up" which is basically him transferring his fries to another plate so he can get the last bit of salt off his plate. This is usually accompanied by a "no" or two.
Joe sighed (that exasperated sigh that only a teenager can do) and said "He really shouldn't talk that loud!" Really? This from the kid that stage whispers loud enough in church for people 3 rows away from us to contribute to the conversation? (OK, not really, but he isn't quiet by any stretch of the imagination!)
Alan's "no" wasn't that loud and we were in a noisy place. We just pointed out to Joe that Alan doesn't have a lot of words and he wasn't yelling and we thought it was fine.
"Well, I just don't think he should do that. It is sort of rude." OK. The king of etiquette has spoken.
Finally it is time to leave and we are collecting our things and Joe says in his normal dulcet tone, "Just a second I have some ear wax I need to clean out of my ear."
Clearly he and his brother are subject to different rules.
Friday, April 26, 2013
Those three magic words
What three words are music to a parent's ears? Most people would say "I love you!" Don't get me wrong, I would love to hear them from either of my boys -- and have them mean it, not just parrot it -- but I sometimes think my favorite words are "Your prescription's ready!"
OK, not really, but I do have a close, personal relationship with my local pharmacist! I walk up to the counter and the pharmacist (or any of the technicians) says "Oh hi Mrs. Sparks, are you here to get this month's supply?" I am so anal-retentive that I have all our family's 11 medicines renewed at the same time -- heck, otherwise I would be up there twice a week!
The boys are on an assortment of meds and we have certainly had our shares of mishaps along the road (The Case of the Missing Medicine) but currently both are in a good place. I won't say great, because that will change as they grow.
About two months ago Alan's OCD was out of control. It took him 5 minutes to get off the bus in the afternoon. He had to walk back and forth, recite scripts from various movies and just "think about it" for quite a while. We changed one of his meds a couple of weeks ago and yesterday he was off the bus in less than 30 seconds! Yeah!!!!!!
Today he has the day off school. Now to see how he behaves out in public as we run errands. Wish me luck ....
OK, not really, but I do have a close, personal relationship with my local pharmacist! I walk up to the counter and the pharmacist (or any of the technicians) says "Oh hi Mrs. Sparks, are you here to get this month's supply?" I am so anal-retentive that I have all our family's 11 medicines renewed at the same time -- heck, otherwise I would be up there twice a week!
The boys are on an assortment of meds and we have certainly had our shares of mishaps along the road (The Case of the Missing Medicine) but currently both are in a good place. I won't say great, because that will change as they grow.
About two months ago Alan's OCD was out of control. It took him 5 minutes to get off the bus in the afternoon. He had to walk back and forth, recite scripts from various movies and just "think about it" for quite a while. We changed one of his meds a couple of weeks ago and yesterday he was off the bus in less than 30 seconds! Yeah!!!!!!
Today he has the day off school. Now to see how he behaves out in public as we run errands. Wish me luck ....
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