Most of the time, when someone expresses a desire for a "cure" to the autism community, one of the neuro-diversity (ND) folks says, "If you want to cure your child with autism, you are no better than the religious extremist parents who try to pray away their child's homosexuality." I have a few problems with this.
First off, a homosexual can have a rewarding and fulfilling life whether or not they are "cured". Let's not get into salvation here, folks, I am talking about their life here on earth. They can hold down the job of their choice, live independently, and do almost anything they wish -- except get married in some states, but that seems to be changing as well.
Many autistics (especially those that are leaders in the ND movement like Ari, JER, Temple, etc.) also live fulfilling lives. Wonderful. Do I think they should be forced to take a "cure"? Hell, no.
But what about the autistics on the other end of the spectrum? What about the non-verbal folks or the ones with debilitating co-morbids? Can they live rewarding and fulfilling lives? Many of those folks will need long term care and cannot ever hope to live independently. Is this a full life? Not so much.
Secondly, the religious extremist is in conflict with the homosexual child. One wants the condition while the other does not. In the case of my older, verbal son, we are both opposed to the autism. He has told me repeatedly that he wishes he didn't have autism. So we are NOT in conflict. While I have no idea what the younger son would say about this (as he is non-verbal) he is the one that will have the most limitations on his life.
So if I do not consider a cure, aren't I dooming him to an institution some time in the future?
Isn't that almost child abuse? It certainly seems neglectful to not even consider the possibility of a cure.
The other analogy that is usually thrown out is that it is like you are saying you want a totally different child -- a non-autistic one.
OK, I get this one, but it isn't accurate. If a parent were to say "I would do anything to get rid of my son/daughter's autism" then I would be right there with the ND folks to condemn them.
But I have NEVER said that I would do "anything" to cure my child(ren). I refuse to put either of them through anything that I feel would harm him. If a cure is never found, I will continue to raise and love these two quirky young men I have been given. Their autism is only one aspect of their personality.
Would they have the same personality without their autism? I actually think they would. It has been formed. But I do want to know what my 16 year old is thinking when he giggles for no apparent reason. Do I care if he toe walks or flaps or makes eye contact or whatever? Not so much. But I would like someone to find a cure for the unnecessary violence and communication problems. In my opinion those are not co-morbids they are the autism.
So yes, I am still hoping for a cure.
Showing posts with label support. Show all posts
Showing posts with label support. Show all posts
Friday, August 22, 2014
Tuesday, July 29, 2014
What have I done?
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!
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!
Tuesday, June 17, 2014
The next step
Joe graduated from high school over a year ago. I never thought it would be this hard to get him a job! Although I know he interviews poorly (when asked if he would like doing something he usually answers truthfully "well I guess it would be okay if you paid me enough") he is a hard worker and really wants to be useful.
So after our college option disappeared for this fall, my interest in getting him busier peaked. We reapplied to Vocational Rehab (which we had abandoned last fall because of a personality conflict with his employment specialist) and while we were waiting for the speedy government, his job coach at the coffee shop (Kim) heard about a local hospital who wanted to hire special needs folks. He had an interview last week with a few folks from the hospital and several people from Kim's company. He reluctantly let us dress him up in a suit.
Turns out he was the star of the interviews. One other boy dressed up but Kim said it looked like his polo had been over with her truck and one girl had "hygiene issues". Well that is one way to get Joe to stand out in a favorable way! He has his second interview with the hospital tomorrow.
Then yesterday Kim told me about a dishwasher position at a local restaurant. This morning Joe told me that this week was very stressful and he was looking forward to no more interviews for awhile!
But he did go over to the restaurant with Kim today. Although this isn't even Kim's job, she is trying so hard to get Joe a real job and I am truly touched. Joe came home positively bubbly (for him) and told me that the restaurant wanted to hire him. "And they even are going to pay me!"
He is still going to the hospital interview tomorrow but he told me he was pretty sure he wanted the dishwasher job. Of course, I am torn. Part of me says "go for the hospital" there is more long term benefits to working there. The other part of me says "go for the restaurant" and work there until next fall and then reapply to college. The hospital would probably pay more but it is also a 25 minute drive from home on a busy interstate. Pros and cons to both.
But whatever route he chooses, my 6' 2" little boy will be working somewhere very soon -- and they are even going to pay him!
So after our college option disappeared for this fall, my interest in getting him busier peaked. We reapplied to Vocational Rehab (which we had abandoned last fall because of a personality conflict with his employment specialist) and while we were waiting for the speedy government, his job coach at the coffee shop (Kim) heard about a local hospital who wanted to hire special needs folks. He had an interview last week with a few folks from the hospital and several people from Kim's company. He reluctantly let us dress him up in a suit.
Turns out he was the star of the interviews. One other boy dressed up but Kim said it looked like his polo had been over with her truck and one girl had "hygiene issues". Well that is one way to get Joe to stand out in a favorable way! He has his second interview with the hospital tomorrow.
 | ||
| Practicing dish washing ("Mom, not THAT kind of dish washing!") |
Then yesterday Kim told me about a dishwasher position at a local restaurant. This morning Joe told me that this week was very stressful and he was looking forward to no more interviews for awhile!
But he did go over to the restaurant with Kim today. Although this isn't even Kim's job, she is trying so hard to get Joe a real job and I am truly touched. Joe came home positively bubbly (for him) and told me that the restaurant wanted to hire him. "And they even are going to pay me!"
He is still going to the hospital interview tomorrow but he told me he was pretty sure he wanted the dishwasher job. Of course, I am torn. Part of me says "go for the hospital" there is more long term benefits to working there. The other part of me says "go for the restaurant" and work there until next fall and then reapply to college. The hospital would probably pay more but it is also a 25 minute drive from home on a busy interstate. Pros and cons to both.
But whatever route he chooses, my 6' 2" little boy will be working somewhere very soon -- and they are even going to pay him!
Tuesday, March 18, 2014
Our college option
I found out about a new option for Joe for college this week. Up until now, I had pretty much written off college. I had hoped to maybe get him to take some basic classes at a community college, but full-time, dorm life college I had figured was never going to happen.
Then this week I found out about a local college that has a program for 18-25 year olds with intellectual or developmental disabilities. It is a two year program with internships, peer mentors, etc. for 20 students where the kids live on campus in a supervised dorm. Several of the kids from his past activities are also applying. Reading over the requirements, I was over the moon -- he met all of the criteria easily. This was THE program I wanted for Joe and it was in town.
It is expensive, but we had put aside money in a 529 account and that can only be used for post secondary education. Except ... that neither of our children were likely to ever go to college. So now we had this money that was going to be penalized heavily if we were to ever access it again.
Overall this seemed like a match made in heaven.
Until I brought it up to Joe.
The very first words out of his mouth were "I don't want to live in a dorm."
Crap.
Finally after talking to him at length, I figured out the reason was that he was worried there would be fire drills in college. Nope, no fire drills. A secondary (but more minor) concern was uniforms. Nope, no uniforms.
So now he is excited. Now we just have to see if he can get in.
Say some prayers, peeps!
Then this week I found out about a local college that has a program for 18-25 year olds with intellectual or developmental disabilities. It is a two year program with internships, peer mentors, etc. for 20 students where the kids live on campus in a supervised dorm. Several of the kids from his past activities are also applying. Reading over the requirements, I was over the moon -- he met all of the criteria easily. This was THE program I wanted for Joe and it was in town.
It is expensive, but we had put aside money in a 529 account and that can only be used for post secondary education. Except ... that neither of our children were likely to ever go to college. So now we had this money that was going to be penalized heavily if we were to ever access it again.Overall this seemed like a match made in heaven.
Until I brought it up to Joe.
The very first words out of his mouth were "I don't want to live in a dorm."
Crap.
Finally after talking to him at length, I figured out the reason was that he was worried there would be fire drills in college. Nope, no fire drills. A secondary (but more minor) concern was uniforms. Nope, no uniforms.
So now he is excited. Now we just have to see if he can get in.
Say some prayers, peeps!
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!!!!
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.
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 21, 2013
"I'm Sorry"
I have heard so many times from special needs parents how much they despise the words "I'm sorry" when it comes to their children. Well, I'm sorry, but I don't get that one. What would you rather people say? "Congratulations!"???
There isn't a person alive that thinks when they are pregnant "oh I hope I get a special needs child!" But that doesn't mean we don't love them all the same. Now there are amazing people out there that choose to adopt special needs children and all I can say is "Wow! More power to you!"
But when it comes to a child you gave birth to or that you adopted not knowing their issues, I think "I'm sorry" is a fine thing to say.
A person that says "I'm sorry" isn't saying "I'm sorry that your child was born." They are merely saying "I'm sorry you have these difficulties." Some days, I feel sorry for myself, too! Other days I am pretty thrilled that I don't have typical kids.
Usually when I hear "I'm sorry" it is because I am trying to get some form of accommodation (like no waiting at the doctor's office) so I just say "thank you" and move on. Occasionally I hear it when I am catching up with an old friend and I am explaining why my 18 yo high school graduate is not looking at colleges. Then I usually respond with some snarky comeback like "well at least I don't have the tuition payments you have!"
On the other hand I do get tired of people telling me what therapy to use or how I should parent. I'm sorry, but live at my house for a week and then make your snarky comment about how unhealthy my child eats. Do you honestly think I don't know that it is unhealthy?
So for all those parents out there that despise "I'm sorry", I'm sorry, I just don't get it. There are a lot bigger issues out there.
There isn't a person alive that thinks when they are pregnant "oh I hope I get a special needs child!" But that doesn't mean we don't love them all the same. Now there are amazing people out there that choose to adopt special needs children and all I can say is "Wow! More power to you!"
But when it comes to a child you gave birth to or that you adopted not knowing their issues, I think "I'm sorry" is a fine thing to say.
A person that says "I'm sorry" isn't saying "I'm sorry that your child was born." They are merely saying "I'm sorry you have these difficulties." Some days, I feel sorry for myself, too! Other days I am pretty thrilled that I don't have typical kids.
Usually when I hear "I'm sorry" it is because I am trying to get some form of accommodation (like no waiting at the doctor's office) so I just say "thank you" and move on. Occasionally I hear it when I am catching up with an old friend and I am explaining why my 18 yo high school graduate is not looking at colleges. Then I usually respond with some snarky comeback like "well at least I don't have the tuition payments you have!"
On the other hand I do get tired of people telling me what therapy to use or how I should parent. I'm sorry, but live at my house for a week and then make your snarky comment about how unhealthy my child eats. Do you honestly think I don't know that it is unhealthy?
So for all those parents out there that despise "I'm sorry", I'm sorry, I just don't get it. There are a lot bigger issues out there.
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?!?!?!
Friday, June 14, 2013
Happy Father's Day, DH!
As regular readers know, I do not refer to my hubby by name, merely as DH. Lest anyone be confused that does stand for Dear Husband NOT D*%# Husband.
DH and I met some 25 years ago and it wasn't exactly love at first sight. We both thought the other had some goofy traits -- I was concerned about silly things like whether or not his clothes matched (they didn't) and he thought I needed to grow up (I did). Obviously we did eventually reconcile these little problems.
So fast forward some seven years to Joe's birth. I know that DH and I were terrified. I would be hard pressed to say who was more so. We were both the youngest in our family and although we both had nieces, we really had very limited experience with kids in general and babies in particular.
We both have a vivid memory of leaving the hospital, getting out to the car with Joe and wondering how the heck did we get the car seat in the car?!?!?! I am positive that he was not properly restrained for that first short drive. Then there were diapers. I think I had changed a grand total of two diapers before Joe was born and I'm not sure DH had even changed that many.
I'm sure anyone who has ever cared for a newborn remembers that dreaded "transition" diaper. That's the one with the consistency, color and smell of rancid tar. We got Joe's at about 3 in the morning on his first night home. While trying to clean it up (which took two of us) we were both christened along with the wall and floor of Joe's room -- ah, the special joys of little boys. I was in so much pain from trying to breastfeed and a difficult birth that all I wanted to do was cry but DH just laughed which made me laugh and like so many things that would come later, he helped me immensely.
Joe wasn't always an easy baby. He would make himself go rigid and thrash like there was no tomorrow. But like many with autism he was the world's cutest toddler. But he only had about 10 words until he was almost 3 when we started our own version of ABA so he was definitely a challenge!
DH was always fantastic about coming with me to doctor after doctor and school meeting after school meeting. I remember when we had home ABA with Joe and DH would make it to most of the team meetings. Our ABA coordinator told us she didn't even know what most of the dads looked like and here was DH sitting in and contributing in most of the meetings.
He would take Joe to the pool, the playground and even built a swing-set for him. (And 14 years later, that swing-set is still in use by the younger child.) But Dad and Joe are still pals and play tennis, chess and go for bike rides.
But I think what I like best about DH as a father is that he was never upset about the fact that Joe didn't play conventional sports. We tried both t-ball and soccer when he was younger and they were complete disasters. But it was never an issue. I know so many guys that want to live vicariously through their male off-spring and DH was never that way. He happily took Joe to gymnastics and later piano and bowling. He taught him how to play tennis and we both taught him to ride a bike (with DH doing more of the running than yours truly!)
He also liked just relaxing and being silly with Joe.
Although he had a little denial before Joe was diagnosed he probably had less than me with Alan. I was just convinced that lightning did NOT strike twice. Alan was such a different baby than Joe -- cuddly, amazing eye contact, lots more babbling -- that I did not think he could possibly have autism.
But once again, with DH's fantastic sense of humor and help, we got through all the sleepless nights, the poop smearing, the B-12 shots in Alan's butt while he slept, the bizarre climbing, the endless "Alan-proofing" of the basement, etc.
The poor guy even has allergies but when Joe wanted a cat, DH said sure.
And DH still has some of the ickier jobs with the boys. He usually ends up taking Alan to the sedation dentist because it takes two males (DH and the doc) along with three nurses to hold him down and give him the initial shot.
And through all this, he remains my best friend and the person most likely to make me laugh. Overall I couldn't ask for a better husband or Dad to my boyz!
Love you, babe!
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| The young and the clueless |
DH and I met some 25 years ago and it wasn't exactly love at first sight. We both thought the other had some goofy traits -- I was concerned about silly things like whether or not his clothes matched (they didn't) and he thought I needed to grow up (I did). Obviously we did eventually reconcile these little problems.
So fast forward some seven years to Joe's birth. I know that DH and I were terrified. I would be hard pressed to say who was more so. We were both the youngest in our family and although we both had nieces, we really had very limited experience with kids in general and babies in particular.
We both have a vivid memory of leaving the hospital, getting out to the car with Joe and wondering how the heck did we get the car seat in the car?!?!?! I am positive that he was not properly restrained for that first short drive. Then there were diapers. I think I had changed a grand total of two diapers before Joe was born and I'm not sure DH had even changed that many.
Joe wasn't always an easy baby. He would make himself go rigid and thrash like there was no tomorrow. But like many with autism he was the world's cutest toddler. But he only had about 10 words until he was almost 3 when we started our own version of ABA so he was definitely a challenge! DH was always fantastic about coming with me to doctor after doctor and school meeting after school meeting. I remember when we had home ABA with Joe and DH would make it to most of the team meetings. Our ABA coordinator told us she didn't even know what most of the dads looked like and here was DH sitting in and contributing in most of the meetings.
He would take Joe to the pool, the playground and even built a swing-set for him. (And 14 years later, that swing-set is still in use by the younger child.) But Dad and Joe are still pals and play tennis, chess and go for bike rides.But I think what I like best about DH as a father is that he was never upset about the fact that Joe didn't play conventional sports. We tried both t-ball and soccer when he was younger and they were complete disasters. But it was never an issue. I know so many guys that want to live vicariously through their male off-spring and DH was never that way. He happily took Joe to gymnastics and later piano and bowling. He taught him how to play tennis and we both taught him to ride a bike (with DH doing more of the running than yours truly!)
He also liked just relaxing and being silly with Joe.
Although he had a little denial before Joe was diagnosed he probably had less than me with Alan. I was just convinced that lightning did NOT strike twice. Alan was such a different baby than Joe -- cuddly, amazing eye contact, lots more babbling -- that I did not think he could possibly have autism.
But once again, with DH's fantastic sense of humor and help, we got through all the sleepless nights, the poop smearing, the B-12 shots in Alan's butt while he slept, the bizarre climbing, the endless "Alan-proofing" of the basement, etc.
The poor guy even has allergies but when Joe wanted a cat, DH said sure.
And DH still has some of the ickier jobs with the boys. He usually ends up taking Alan to the sedation dentist because it takes two males (DH and the doc) along with three nurses to hold him down and give him the initial shot.
And through all this, he remains my best friend and the person most likely to make me laugh. Overall I couldn't ask for a better husband or Dad to my boyz!
Love you, babe!
Monday, June 10, 2013
Facebook ... a love/hate relationship
After my last post Why I think it is okay to hate autism ... my numbers have jumped. I wish I had thought to make a note of things like how many followers I had (I think it used to be 12 and now it is 17) or how many likes I have on my Facebook page (I think it used to be about 45 and now it is 73) but for someone who is really doing this blog for fun, I have
never paid super close attention. Still it was a very gratifying weekend in blogland.
So now that I have all these people that are interested in autism, this blog entry has almost nothing to do with autism. This is all about my love/hate relationship with Facebook.
I have been on Facebook as myself for about 6 years. Some of my sons' teachers were actually the first to invite me -- being younger than myself they were aware of Facebook and active on Facebook long before most of my peers.
But eventually even middle aged dogs learn new tricks and so I have been able to reconnect with so many people from my past -- college, high school, even all the way back to grade school -- and it has been a blast. I have made friends in my hobby field that I never would have been able to find if it hadn't been for the wonder of Facebook. I have a huge network of special needs parents that really "get" it when I post some of the antics of my boyz. I feel like I have a much closer relationship with my nieces than I did pre-Facebook. And I absolutely love the sharing of humor on Facebook rather than the e-mail forwards of 10 years ago.
This is obviously the "Love" portion of the relationship.
So where does the "Hate" portion come in?
1. Politics. In my opinion, Facebook should be a "politics free" zone. I am a rather moderate person when it comes to politics. I tend to get both sides. But I have never understood why people have to be so extreme when it comes to their political opinions on FB. Just because someone voted the other way, does not make them "an idiot" or worse. Before the last American presidential election, I had about 10 people completely blocked. Sigh.
2. The rudeness. I have a friend who is an atheist that always makes fun of a mutual friend's religious posts. Can't we just accept our differences? It isn't like the mutual friend is trying to convert the atheist. She is just expressing her views in a factual and usually positive way.
3. The triviality. Absolutely no one cares that you are doing laundry. And only a few people care about your hobbies, what you made for dinner, how long you worked out or what level you reached in Candy Crush Saga. I set up a separate page for my main hobby and of course one for this blog. If that is something they are interested in, they can like it and find out all they want.
4. The stalkers. I am sort of an open person. I try to go for at least a couple of posts a week. There are some people that I have no idea what is going on in their lives and yet they regularly comment on my posts so I know they are on Facebook. I found out that one friend's child got married when she posted the pictures. She wasn't so close that I expected an invitation, but this was big news and I wished I had known. I didn't even know her daughter was dating anyone!
5. The people who don't edit. Last year, I had one person share about two dozen pictures from her daughter's prom - individually. Yep, each one got loaded one at a time over about an hour. Keep in mind that there are a lot of prom pictures in April and May. The girl was on court and cute as a bug, but I really didn't want all those pictures hogging my feed. Then there are the people who post 200 pictures from a vacation. Really? Can't you pick the highlights and put the rest in your family photo album? And I hate to break it to some of you, but your camera phone has lousy resolution and I can't tell if that is your son or your daughter -- much less where they are and what they are doing! And I won't even mention the atrocious spelling or grammar.
6. The ones who don't get it but still have to put in their 2 cents -- every time. I post about Alan climbing the shelves in the basement and breaking them and how I have to mount all the furniture to the walls and someone posts that her grandson climbs as well. Yes, and he is a 30 lb. two year old who will most likely outgrow it. I have a 160 lb. 14 year old who has broken the bottom shelf of every single bookshelf in our basement. It just isn't the same.
7. The obscure posters. "Most of you know I am going through a horrible time now." (How are we supposed to know this? Your last four posts have been about your adorable grand-kids.) "Some people are so mean." (Well, duh, but if you want sympathy, you need to tell us what happened.)
8. Those who don't recognize sarcasm.
No I did not really get questioned by the police about what I was
burying in the backyard. And if I had I would have the sense not to
post it on Facebook!
You might be surprised to see that I didn't include the gamers in the hate column. First off, I used to love all the games and I still play Words with Friends most days. I try not to post so everyone can see that I had lousy letters and my last word played was "tie" for 5 points but if I goof, I figure that is something easily blocked. So rather than make ranting posts for people to "stop sending me all these game requests" I just block the person or the game or both and move on.
And now I'm off to check my Facebook pages ...
So now that I have all these people that are interested in autism, this blog entry has almost nothing to do with autism. This is all about my love/hate relationship with Facebook.
I have been on Facebook as myself for about 6 years. Some of my sons' teachers were actually the first to invite me -- being younger than myself they were aware of Facebook and active on Facebook long before most of my peers.
But eventually even middle aged dogs learn new tricks and so I have been able to reconnect with so many people from my past -- college, high school, even all the way back to grade school -- and it has been a blast. I have made friends in my hobby field that I never would have been able to find if it hadn't been for the wonder of Facebook. I have a huge network of special needs parents that really "get" it when I post some of the antics of my boyz. I feel like I have a much closer relationship with my nieces than I did pre-Facebook. And I absolutely love the sharing of humor on Facebook rather than the e-mail forwards of 10 years ago.
This is obviously the "Love" portion of the relationship.
So where does the "Hate" portion come in?
1. Politics. In my opinion, Facebook should be a "politics free" zone. I am a rather moderate person when it comes to politics. I tend to get both sides. But I have never understood why people have to be so extreme when it comes to their political opinions on FB. Just because someone voted the other way, does not make them "an idiot" or worse. Before the last American presidential election, I had about 10 people completely blocked. Sigh.2. The rudeness. I have a friend who is an atheist that always makes fun of a mutual friend's religious posts. Can't we just accept our differences? It isn't like the mutual friend is trying to convert the atheist. She is just expressing her views in a factual and usually positive way.
3. The triviality. Absolutely no one cares that you are doing laundry. And only a few people care about your hobbies, what you made for dinner, how long you worked out or what level you reached in Candy Crush Saga. I set up a separate page for my main hobby and of course one for this blog. If that is something they are interested in, they can like it and find out all they want. 4. The stalkers. I am sort of an open person. I try to go for at least a couple of posts a week. There are some people that I have no idea what is going on in their lives and yet they regularly comment on my posts so I know they are on Facebook. I found out that one friend's child got married when she posted the pictures. She wasn't so close that I expected an invitation, but this was big news and I wished I had known. I didn't even know her daughter was dating anyone!
6. The ones who don't get it but still have to put in their 2 cents -- every time. I post about Alan climbing the shelves in the basement and breaking them and how I have to mount all the furniture to the walls and someone posts that her grandson climbs as well. Yes, and he is a 30 lb. two year old who will most likely outgrow it. I have a 160 lb. 14 year old who has broken the bottom shelf of every single bookshelf in our basement. It just isn't the same.
7. The obscure posters. "Most of you know I am going through a horrible time now." (How are we supposed to know this? Your last four posts have been about your adorable grand-kids.) "Some people are so mean." (Well, duh, but if you want sympathy, you need to tell us what happened.)
You might be surprised to see that I didn't include the gamers in the hate column. First off, I used to love all the games and I still play Words with Friends most days. I try not to post so everyone can see that I had lousy letters and my last word played was "tie" for 5 points but if I goof, I figure that is something easily blocked. So rather than make ranting posts for people to "stop sending me all these game requests" I just block the person or the game or both and move on.
And now I'm off to check my Facebook pages ...
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 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.
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.
Thursday, April 11, 2013
Keeping things in perspective
We have ants in our kitchen. It is gross. I'm not talking a couple dozen ... I've killed several hundred (probably over a thousand) in the last two days. But really, what does it matter? My children, my husband and I are alive and healthy.
Most of you that follow other special needs blogs are aware of the struggles of the Leong family at Chasing Rainbows. Kate (the bloggess mom) is almost always fantastically upbeat for the lot she has been dealt in life. But right now with her older son fighting for his life and the doctors not even sure if there is any brain activity she is struggling. She is actively begging for prayers so if you are at all religious, please take a moment to do just that.
But back to the ants, the last time we had them was several years ago and they were in the basement by the cat's food. It was still gross, but it was the basement and it was the cat's food not ours. This time they are in the kitchen. I can't figure out where they are coming in but they are everywhere! But no, this is not really a picture of our kitchen floor.
Tuesday morning Joe woke me up with, "Mom we've got ants in the kitchen!" and when I went in there I discovered them all over the floor near Alan's dropped food. OK, I should sweep that up every night but he drops so much so often that even with sweeping twice a day (or more) there is usually food on our kitchen floor!
Then Tuesday afternoon I discovered them on the counter (grosser!) and swarming all over the cat's water bowl. Poor Diesel! I did my usual baby powder on every flat surface and they were still everywhere.
Then a friend suggested Terro Ant Killer and I was a lady on a mission. I bought some of their bait stations yesterday and set them out and that got quite a few of them but not all. Today I am going out to buy the stuff that actually kills them.
This morning Joe asked why I didn't just spray some bug spray. I tried to explain to him that you can't spray it in a kitchen because of the food. "Can't you just spray it everywhere else and not on the food?" Um, it isn't quite that simple.
But while ants may be gross, they aren't life threatening. And back to the poor Leong family, little 5 year old Gavin is fighting for his life. I had read about Kate's struggles on Facebook and commented on FB and DH saw my comment and read her blog. He normally only reads mine and the ones I specifically ask him to read, but he read enough of hers to really sympathize.
Then last night at bed he summed it up quite nicely, "It sure puts ants in perspective!" Yep, it does.
Most of you that follow other special needs blogs are aware of the struggles of the Leong family at Chasing Rainbows. Kate (the bloggess mom) is almost always fantastically upbeat for the lot she has been dealt in life. But right now with her older son fighting for his life and the doctors not even sure if there is any brain activity she is struggling. She is actively begging for prayers so if you are at all religious, please take a moment to do just that.
But back to the ants, the last time we had them was several years ago and they were in the basement by the cat's food. It was still gross, but it was the basement and it was the cat's food not ours. This time they are in the kitchen. I can't figure out where they are coming in but they are everywhere! But no, this is not really a picture of our kitchen floor.
Tuesday morning Joe woke me up with, "Mom we've got ants in the kitchen!" and when I went in there I discovered them all over the floor near Alan's dropped food. OK, I should sweep that up every night but he drops so much so often that even with sweeping twice a day (or more) there is usually food on our kitchen floor!
Then Tuesday afternoon I discovered them on the counter (grosser!) and swarming all over the cat's water bowl. Poor Diesel! I did my usual baby powder on every flat surface and they were still everywhere.
Then a friend suggested Terro Ant Killer and I was a lady on a mission. I bought some of their bait stations yesterday and set them out and that got quite a few of them but not all. Today I am going out to buy the stuff that actually kills them.
This morning Joe asked why I didn't just spray some bug spray. I tried to explain to him that you can't spray it in a kitchen because of the food. "Can't you just spray it everywhere else and not on the food?" Um, it isn't quite that simple.
But while ants may be gross, they aren't life threatening. And back to the poor Leong family, little 5 year old Gavin is fighting for his life. I had read about Kate's struggles on Facebook and commented on FB and DH saw my comment and read her blog. He normally only reads mine and the ones I specifically ask him to read, but he read enough of hers to really sympathize.
Then last night at bed he summed it up quite nicely, "It sure puts ants in perspective!" Yep, it does.
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