I just finished reading a book. Look Me In The Eye, By John Elder Robison. -Remarkable, breathtaking, tragic, sad, hilarious, compassionate, insightful and laser-beam accurate all come to mind.
John Elder Robison's Blogspot page
You can find information about this publication at by clicking the link above.
I couldn't possibly write anything more here that would do justice to this piece of work. You just have to read it for yourself. You won't be sorry.
Thursday, June 24, 2010
Monday, June 21, 2010
Sunscreen
This year I bought my son unscented, no-dye sunscreen thinking that this would fit his criteria for items with no weird smells or colors. -Wrong!
When reminding him today to use his sunscreen if (while at camp) he goes outside to put it on. He said, "I'm not using that." That's when it dawned on me like a bolt of lightening! Normal sunscreen in a squeeze tube requires that a person touch it to apply it. This is the main negative criteria. Dye is irrelevant and scent is secondary.
Spray sunscreen!!! Duh! I swear, sometimes I feel like I'm the one who's brain is different.
So I stopped at the corner drugstore and got two bottles of brand name, high SPF spray-on sunscreen. He loved it. He doesn't have to touch it. His hands won't be greasy all day long. He's happy and I'm ecstatic! I know, little breakthroughs are so important though because being Autistic isn't about the big picture, it's all about the details.
Sunday, June 20, 2010
Dinner Challenge
I've watched those cooking shows where celebrity chefs have 30 minutes to prepare food for hundreds or there's a steamy battle in a close-quartered kitchen. Sometimes, chefs are given a mis-matched lot of ingredients and they have to come up with something creative using everything.
I've often wondered how fast these professionals would wither in defeat if they had to cook for a child with food issues. This is my challenge every week and I don't get paid, receive notoriety or accolades or even thanks most days. It's never ending. I cannot walk off the set though I'd secretly love to one day.
Today is Sunday. For me, this means that I have to plan the meals for the week. I do this because I've found that arriving home at 5:45pm and having absolutely no clue as to what to prepare for dinner can quickly turn into a beast of a nightmare. I have to plan it out. There's no time to think on my feet when I really would just love to get off them for a few minutes.
Planning meals used to be something I loved. Now - I still enjoy it, but it's a challenge to say the least. There simply aren't that many foods that my oldest will eat. He could live on the same five meals every day, all day and think nothing of it. The rest of us would keel over with boredom and disgust.
My weekly challenge is how to create just enough variety within an adequate amount of familiarity so that he's interested enough to eat on safe footing that he's willing to try something new (once in a while) and the rest of us don't wither from culinary boredom. Cheese and pasta are always good. Pizza (cheese only) is usually okay. He likes broccoli, rice and chicken. Easy, right? No. I can't mix any of these together to form a new food with items that I know he likes. Trust me, I've tried.
As well, nothing with artificial dye in it. Nothing with multiple textures in one forkful of food. No onions in anything. Only rarely will he eat meat of any kind. Are you beginning to see why this is so hard?
Some days I feel as though I have to make special meals within meals so that my oldest will have something he likes. When he gets hungry, he's extremely crabby. I can understand this, I'm the same way. So 'full' is much better for everyone.
So today is 'menu day' and I feel a headache coming on. Let's see . . . bread and butter, Hummus and pita chips, applesauce and cheese. Does this constitute "dinner"? Today - it just might.
I've often wondered how fast these professionals would wither in defeat if they had to cook for a child with food issues. This is my challenge every week and I don't get paid, receive notoriety or accolades or even thanks most days. It's never ending. I cannot walk off the set though I'd secretly love to one day.
Today is Sunday. For me, this means that I have to plan the meals for the week. I do this because I've found that arriving home at 5:45pm and having absolutely no clue as to what to prepare for dinner can quickly turn into a beast of a nightmare. I have to plan it out. There's no time to think on my feet when I really would just love to get off them for a few minutes.
Planning meals used to be something I loved. Now - I still enjoy it, but it's a challenge to say the least. There simply aren't that many foods that my oldest will eat. He could live on the same five meals every day, all day and think nothing of it. The rest of us would keel over with boredom and disgust.
My weekly challenge is how to create just enough variety within an adequate amount of familiarity so that he's interested enough to eat on safe footing that he's willing to try something new (once in a while) and the rest of us don't wither from culinary boredom. Cheese and pasta are always good. Pizza (cheese only) is usually okay. He likes broccoli, rice and chicken. Easy, right? No. I can't mix any of these together to form a new food with items that I know he likes. Trust me, I've tried.
As well, nothing with artificial dye in it. Nothing with multiple textures in one forkful of food. No onions in anything. Only rarely will he eat meat of any kind. Are you beginning to see why this is so hard?
Some days I feel as though I have to make special meals within meals so that my oldest will have something he likes. When he gets hungry, he's extremely crabby. I can understand this, I'm the same way. So 'full' is much better for everyone.
So today is 'menu day' and I feel a headache coming on. Let's see . . . bread and butter, Hummus and pita chips, applesauce and cheese. Does this constitute "dinner"? Today - it just might.
Thursday, June 10, 2010
Who says kids with Asperger's are impaired?
We're four days into summer camp and it's going well with only the most expected bumps in the road.
My two sons are together at a city recreation center basically being occupied with various field trips, games, and sporting activities for six hours every day - which is great for me and a learning experience for them.
The first day, my youngest got a terrible sunburn. He decided not to wear the sun/swim shirt that I packed for him because none of the other kids were wearing them. As a result, he's in a pretty good deal of pain across his upper back and shoulders. In fact, Wednesday, my oldest (the one with Asperger's) called from the Rec center and reported that his brother was crying in pain and he thought it would be best if I came to pick him up.
When I got there, my oldest was ready to leave too. I asked why he wasn't staying. After all, they were going bowling and to a movie. It would have been a fun day and the activities were even of the sort that didn't involve a great deal of social interchange. In short, bowling and movies are what I call "simultaneous unshared experiences." They're activities that he likes because they appear normal and don't require him to dive into deep social interplays. He loves them for this reason.
But he didn't want to stay. His actual reply was, "If my brother can't stay, then I'm not going to stay either. it wouldn't be very nice of me. I'll stay with him and make sure he's okay."
Now this comes from my child with Asperger's - the same kid who's not supposed to be good at either emotional inference or social interplay, who has a really hard time with jokes and definately has to work at understanding ambiguity and duplicity. And yet, consistently, he teaches both his brother and me that the degree and style of his disability haven't affected his ability to feel compassion, understand complex social situations and provide clear, unblemished emotional support in an extremely sincere and mature and unexpected way.
So who exactly is the one who's disabled here?
My two sons are together at a city recreation center basically being occupied with various field trips, games, and sporting activities for six hours every day - which is great for me and a learning experience for them.
The first day, my youngest got a terrible sunburn. He decided not to wear the sun/swim shirt that I packed for him because none of the other kids were wearing them. As a result, he's in a pretty good deal of pain across his upper back and shoulders. In fact, Wednesday, my oldest (the one with Asperger's) called from the Rec center and reported that his brother was crying in pain and he thought it would be best if I came to pick him up.
When I got there, my oldest was ready to leave too. I asked why he wasn't staying. After all, they were going bowling and to a movie. It would have been a fun day and the activities were even of the sort that didn't involve a great deal of social interchange. In short, bowling and movies are what I call "simultaneous unshared experiences." They're activities that he likes because they appear normal and don't require him to dive into deep social interplays. He loves them for this reason.
But he didn't want to stay. His actual reply was, "If my brother can't stay, then I'm not going to stay either. it wouldn't be very nice of me. I'll stay with him and make sure he's okay."
Now this comes from my child with Asperger's - the same kid who's not supposed to be good at either emotional inference or social interplay, who has a really hard time with jokes and definately has to work at understanding ambiguity and duplicity. And yet, consistently, he teaches both his brother and me that the degree and style of his disability haven't affected his ability to feel compassion, understand complex social situations and provide clear, unblemished emotional support in an extremely sincere and mature and unexpected way.
So who exactly is the one who's disabled here?
Monday, June 7, 2010
Summer Camp
The boys started Summer Camp today. It's always a challenge. Thank goodness the same counselors are still there from last year so there won't be as much uncertainty for my son. As well, the counselor is prepared for him and all the questions that go along with living in his space, temporarily or otherwise.
There will be games that he will refuse to play and people (hopefully other kids as opposed to the counselors) that will get on his nerves . . . I hope he makes it through the day without a meltdown. He'll certainly make it through camp without one - he may save it for home where he feels safe and more able to express anxiety. I hope, I hope it goes well for him.
Lunch will be the most difficult part of the day. He hates the sound of people chewing. In fact, it's increasingly difficult for him to sit at the table with me and his brother without barking, "Chew with your mouth closed!" adding the 'please' at the end as a sort of afterthought. Most times, he simply eats after we do or takes his plate in another room to avoid fights. What he doesn't grasp well is that this leaves his brother and me feeling very dejected even though we know full well why he does this. We've learned our own social behaviors too. Boy are they hard to change and or re-program! I'm sure it must be so much harder for him.
My wish for him is that as the peers he is surrounded by grow older, he will be more inclined to interact with them.
There will be games that he will refuse to play and people (hopefully other kids as opposed to the counselors) that will get on his nerves . . . I hope he makes it through the day without a meltdown. He'll certainly make it through camp without one - he may save it for home where he feels safe and more able to express anxiety. I hope, I hope it goes well for him.
Lunch will be the most difficult part of the day. He hates the sound of people chewing. In fact, it's increasingly difficult for him to sit at the table with me and his brother without barking, "Chew with your mouth closed!" adding the 'please' at the end as a sort of afterthought. Most times, he simply eats after we do or takes his plate in another room to avoid fights. What he doesn't grasp well is that this leaves his brother and me feeling very dejected even though we know full well why he does this. We've learned our own social behaviors too. Boy are they hard to change and or re-program! I'm sure it must be so much harder for him.
My wish for him is that as the peers he is surrounded by grow older, he will be more inclined to interact with them.
Thursday, June 3, 2010
The shirt off your back
Shirts are important. Pants - are not.
This was my lesson (again) yesterday. Again, because I still haven't learned that people don't change. Especially people with Asperger's. If there are reasons that some shirts aren't okay to wear to school, those reasons cannot be overlooked or dismissed simply because all the acceptable shirts are in the laundry. Unacceptable is bigger than dirty. Literally, emotionally and in every other way that can define a t-shirt.
'Wrong' is 'wrong' no matter what it's made of. The details regarding why aren't really important unless you enjoy flogging yourself with irrelevant information just so there will be something else to think about. It could be anything.
Color is big - stick with primaries. Not white - those are underwear. And of course, shirts have to feel right.
No synthetics so most professional team-branded items are out.
Shirts can't have tags inside the collar.
They can never have stitching that penetrates the inside layer of fabric so that the threads annoy you all day long (for t-shirts, this is particularly tough).
T-shirts should never have stiff decals that change the way fabric breathes, moves or feels from any perspective.
These are only the specifications that I'm aware of. I'm sure there are more. Because my son has a drawer full that fits within these parameters but for reasons I can't understand, "They're not right."
Imagine how hard it is to find something as complicated as a friend when you can't even find a decent, simple t-shirt to wear!
This was my lesson (again) yesterday. Again, because I still haven't learned that people don't change. Especially people with Asperger's. If there are reasons that some shirts aren't okay to wear to school, those reasons cannot be overlooked or dismissed simply because all the acceptable shirts are in the laundry. Unacceptable is bigger than dirty. Literally, emotionally and in every other way that can define a t-shirt.
'Wrong' is 'wrong' no matter what it's made of. The details regarding why aren't really important unless you enjoy flogging yourself with irrelevant information just so there will be something else to think about. It could be anything.
Color is big - stick with primaries. Not white - those are underwear. And of course, shirts have to feel right.
No synthetics so most professional team-branded items are out.
Shirts can't have tags inside the collar.
They can never have stitching that penetrates the inside layer of fabric so that the threads annoy you all day long (for t-shirts, this is particularly tough).
T-shirts should never have stiff decals that change the way fabric breathes, moves or feels from any perspective.
These are only the specifications that I'm aware of. I'm sure there are more. Because my son has a drawer full that fits within these parameters but for reasons I can't understand, "They're not right."
Imagine how hard it is to find something as complicated as a friend when you can't even find a decent, simple t-shirt to wear!
Tuesday, June 1, 2010
Still?
My sister said, "You can't make people be something they're not." What a terrific statement! Why can't all people see this clearly? Why do people continually expect others who are autistic to suddenly behave normally when they would like them to - just because there are episodes when they get close or aren't perceived to be 'as autistic.' What does that even mean?
I see it almost every day and it breaks my heart. Just because my son speaks IT and can have what seems to be a very normal discussion and interchange of ideas about computers, software and all the components of this field doesn't mean that he'll be able to stop displaying, hiding or acting out his emotional condition or response to stimuli in a way that's equally as conventional because you've had a bad day and don't have the patience or energy to analyze his. Emotionally, he'll need help and understanding again and again and again - until you honestly believe you're going to cry and then another 100 times after that point - and then more still.
You can't punish the Asperger's out of them. You can't ground them until they decide not to act like they're Autistic. Why can't they see how stupid and arrogant this sounds? I'm not suggesting that those with ASDs cannot grow, mature and learn. Not in the slightest. What I am suggesting is that those who spend time around those with ASDs do.
People don't change so why do we expect those who are autistic might? Being around an autistic person means you can't be selfish. Oh - that's called 'respect.' Here's a new term to apply to those with Autism! Hmmm . . . . why do some people automatically remove the terms compassion, respect and acceptance from their relationships they have with kids and adults with Autism? I just can't stand that!
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