Why Autism?

[MinnieVanMom]

Our DS has been diagnosed with autism for about 3 years now and we have come very far but every now and then I have to ask....why?

Why doesn't our son understand that when he head butts his BFF it hurts, she cries. Why doesn't he care that he hurt her? Why if he did the same thing wrong each day and I swat him, give him a time out, explain what he did wrong, does he do the exact same thing the next day? Why is he in other's personal space? Why doesn't he get "it"? And last, why am I even asking? I know it just is but sometimes I wish I had an answer. He is just so close to being a NT but there is always something a little off. We don't fit in the NT world and we are not in the physical disabled world either.

Autism does suck at times.

 

[Brightsy]

Awwwwwwwwww
I know just how you feel.
*hands over a box of chocolates and a coffee* Here, have a sit w/ me and we can commiserate.
There are days when I look at my DS7 (he was dx'd at age 2 yrs. 3 months) I wonder why... It really does suck sometimes. (Like yesterday when he had a complete meltdown and nearly broke my nose and glasses...*sigh*) And then there's those other times when he's so sweet.

 

[sdarwkcabemanmy]

DS doesn't have autism, but I know the feeling. He has had speech difficulties, as well as motor delays and has shown signs of sensory issues as well. There have been days when I just wanted to pull my hair out and go "Why me? This isn't FAIR!".

 

[BeckyScott]

Okay, this goes along with it... Some days I have what I call my own "not fair" days. And I wonder what I must have done in a past life to have this all handed to me. Not that I'm all into the reincarnation thing, but just the idea strikes me every now and then, and I wonder. In my case, I think I must have been somebody like a tyrant that had no empathy for other people, was always only concerned with #1. And apparantly rich and skinny too.

I call them my "Galileo" moments, from the Indigo Girls song. Well, it makes me feel better that there's a song about it. Part of the lyrics are

Im not making a joke, you know me
I take everything so seriously
If we wait for the time till all souls get it right
Then at least I know there'll be no nuclear annihilation
In my lifetime Im still not right
I offer thanks to those before me
Thats all Ive got to say
cause maybe you squandered big bucks in your lifetime
Now I have to pay
But then again it feels like some sort of inspiration
To let the next life off the hook
But she'll say look what I had to overcome from my last life
I think Ill write a book

Anyway, it's just sort of a funny thing, (funny wierd not funny ha-ha) that I thought someone else here could probably relate to.

I also get scared because I have no idea what the boys' future holds. What happens the day that Mom can't read all the labels and make the allergy-free meals. Or isn't there for the constant reminders to brush teeth, put on deodorant, go to bed, get up, put the trash in the can, take the trash to the alley, put the dishes in the sink.... you get the point. Maneuvering around in the world without a parent or a para tagging along. I hate to sound like a pig, but I don't know if anyone else can do my job, you know? I don't know if anyone else could do all the things that maybe he will need to have done. As he gets older, that thought gets scarier to me, yes he's making progress but there is so far to go.

 

[buzz for boys]

I can totally relate to everything here and the why ? will kill you if you ponder too long on it!!
I ound a fantastic range of books by guy called Tony Attwood - oh my god its like a book on my ds and the explanation of why he is like he is is just inspirational!!
I found myself not being able to put the book down and really understanding my ds for the first time.
I dont know if you can get it in the usa but id defo reccomend looking!!

 

[MinnieVanMom]

Thanks friends for the reminder that many do understand how it feels. The uncertainity of what does life bring to the future.

Why or what makes it so our children just don't get it? What else can I do to help my guy? I do ABA, stay constant but I don't swat very much as it doesn't do a thing.

Why don't our kids get it?

I can't keep running away to Disney each time it gets overwhelming. We love the escape but the budget just won't allow it.

 

[KirstenB]

I hear you. Sometimes Zoe is so interactive, I think it's just a weird dream we've been stuck in for 2 yrs. Other days, both feet are firmly planted in the Planet Autism. She has improved at staying on Planet Earth for increasingly more time. However, as she gets a little older, her eccentricities stand out more, compared to regular kids. On the plus side, she went potty today. Her big sister gave her a piggy back ride to celebrate. Zoe then put her dolls and her bird, Squawkers McCaw, on the potty. Afterward, she gave them each piggy back rides too, which was pretty cool.

 

[mechurchlady]

Sending you big hugs and snugs and I am NU that person between NT and NV that does not know where to fit in life. All I can do right now is hug you and tell you t will never be easy but you love the ones you are with.

 

[LuvsTinker]

I get it all too well. I wonder some of the same things and how his differences are so much more apparent now than when he was younger even though he has come so far in the last couple of years; know what I mean?

Why does everything have to be so dang hard? from just socializing to doing homework, or asking me the same question 20 times to get the same answer. Harder to tie his shoes, harder to think about answering a question, harder to read, harder to talk, harder to remember stuff, harder, harder, harder.

 

[debbi801]

I don't know the whys either. My first 2 kids are NT. I was used to being able to say "No you can't touch that" and within a few times of me repeating myself, they'd get it. Now I say "Do not touch that glass, it is fragile" and DS hears that as "OK, at 3:30 pm on Wednesday March 24, 2009, I cannot touch that one specific glass. So, I can touch a different glass or I can wait until 4:30 and then it will be ok to touch it." If I'm not specific down to the most minute detail, he doesn't get it. And even then, he doesn't get it. It's a good thing he's cute.

Someone sent me this last week. It really is helping me understand the rocky parts a bit...

Balancing The Tray
By Lenore Gerould

Those of us who have daily contact with children with autism sometimes have trouble explaining to regular education teachers and administrators, the "hooks" of autism - especially the kinds of support they need. You're always trying to explain the basics. "No, moving the pencil sharpener's location in the classroom is not what upset him. You have to understand that…" Then I came up with this analogy. Perhaps it will help others to visualize the support needed.

Try to imagine the child balancing a large serving tray on one up-turned hand. Every distress for that child is like a liquid filled glass you are putting on this tray. The "distress glasses" are unique to each child… but generally include things like auditory or visual over-stimulation, social interaction, "surprises" or unexpected changes in the schedules, lack of clear leadership, the number of people in the room, whatever is "sensitive" for that child. (Don't forget the inability to read body English and the anxiety of the adults around them!) The size and weight of the "glass" for that child varies. Some things are merely shot glass size, while others can be a two liter jug. At some point, the tray is going to start to wobble… the liquid will start spilling out of the glasses on the tray. The "cues" that this is happening will vary from child to child, just as the cause and size of a "glass" varies from child to child… but generally include regressive behavior, avoidance or "shutting down", giggling or minor "acting out" to get attention. Hopefully someone will help the child re-balance that tray or remove some of the glasses. Perhaps taking a break or allowing time to re-focus or process will work. Again techniques are unique to each child. If there is no intervention, the addition of one more glass will topple the tray to the floor. The cause is not the most recent "glass" you added but the fact that the tray was full or too heavy (the latter is why the child seems so unpredictable to some people.)

Our efforts should be that the child learns to hold a bigger tray or to do minor correction of the tray's balance somewhat independently… but he or she will always carry that wobbling tray. Ignoring "cues" can be disastrous, from classroom disruptions to a major regression. When an autistic child's try crashes to the floor, it is always a major event.

That is why, if I hear my son got highly upset over a moved sharpener and acted out, I do not want to hear that he has to learn to accept change. The sharpener is immaterial, if I learn that day that he dealt with a substitute teacher, a fire drill just as reading was starting, dead calculator batteries halfway through Math, a "crashed" computer in the middle of English, a late bus so he missed part of home room and some fluorescent lights in the class are half out - his tray is already full. All of these "distresses" are unavoidable and he'd dealt with them without a hitch - but each was another glass on his tray.

Autistic children need someone around who is familiar with them - to sense how full the tray is getting and read the cues so there is intervention before that wobbling tray topples to the floor. That is why the type of support for these children is critical - not just a "hot body" nearby - but the right "hot body" whom they can trust will help balance and who knows the "hooks". For all of us, life is a balancing act but for the autistic children, the glasses generally break when they hit the floor and it takes a whole lot longer to clean up the mess and get a new tray...

 

[BeckyScott]

Why does everything have to be so dang hard? from just socializing to doing homework, or asking me the same question 20 times to get the same answer. Harder to tie his shoes, harder to think about answering a question, harder to read, harder to talk, harder to remember stuff, harder, harder, harder.

And it always amazes me that we all have adapted to it like it's no big deal. Yes he asks the same question 20 times, but he's done it so many times that you're so used to it, that it doesn't even strike you as odd anymore. It's only when you're around somebody new or out somewhere and you notice other people reacting.

I have people comment about how tidy our living room is. Well, it isn't tidy 'cause I'm a neat freak, it's tidy because it has to be. Because I can't have breakable knick-knack crap everywhere. Because we got rid of the furniture with the sharp corners. Because the carpet made the allergies worse. Because I'd like to be able to walk out of the room and not worry about what would get broken. If you guys walked into our living room, you probably wouldn't even notice. Well maybe you would, because we all automatically scan any new environment looking for potential problems. It's all harder, but it also all starts to be so automatic, you don't even realize until you step back.

 

[bookwormde]

Debbi801

That is one of the best analogies I have ever seen for the stress that our children face in balancing the challenges of the neurotypical social world, thank you for posting it.

bookwormde

 

[debbi801]

I get it all too well. I wonder some of the same things and how his differences are so much more apparent now than when he was younger even though he has come so far in the last couple of years; know what I mean?

Why does everything have to be so dang hard? from just socializing to doing homework, or asking me the same question 20 times to get the same answer. Harder to tie his shoes, harder to think about answering a question, harder to read, harder to talk, harder to remember stuff, harder, harder, harder.

Yep. When we first started seeing the doctors we've been working with for the past year, they asked for DS's history. the first thing I told them was that from birth, DS was just more. I knew that i'd found doctors that understood NV kids because they got it. They knew what I was talking about. (Previous doctors just looked at me oddly when I'd say that.)

Debbi801

That is one of the best analogies I have ever seen for the stress that our children face in balancing the challenges of the neurotypical social world, thank you for posting it.

bookwormde

Thanks. A co-worker who also has a child on the spectrum sent it to me. DH and I thought it was perfect.

 

[LuvsTinker]

And it always amazes me that we all have adapted to it like it's no big deal. Yes he asks the same question 20 times, but he's done it so many times that you're so used to it, that it doesn't even strike you as odd anymore. It's only when you're around somebody new or out somewhere and you notice other people reacting.

You're so right; most things don't phase me anymore. My older son will come home from college and question why his brother is doing "that". Duh, because "that" is what he "does". Don't expect him to act like everyone else

 

[LuvsTinker]

Yep. When we first started seeing the doctors we've been working with for the past year, they asked for DS's history. the first thing I told them was that from birth, DS was just more. I knew that i'd found doctors that understood NV kids because they got it. They knew what I was talking about. (Previous doctors just looked at me oddly when I'd say that.)

MORE is a great way to describe it

 

[Tarheel girl 1975]

I still deal with this all the time. Then I get angry and have a pity party. Noah start kindergarten next year and I'm so worried about it.

 

[sdarwkcabemanmy]

If you guys walked into our living room, you probably wouldn't even notice. Well maybe you would, because we all automatically scan any new environment looking for potential problems. It's all harder, but it also all starts to be so automatic, you don't even realize until you step back.

DS is a chewer, so when we go somewhere new, I'm always scanning for things that might potentially interest him enough to go in his mouth for a good nom. I also try to have at least thing that's safe for him to nom on with me wherever I go, to keep him from nomming on inappropriate things (sleeves seem to be big right now..whether they are his own or somebody elses).

 

[77SU]

Our DS is now 25, is a diagnosed Aspie, and is able to drive himself to his garden greeter job at WalMart. This is way beyond the diagnosis we had when he was a freshman in HS. Through the early years we kept asking what we did wrong and finally realized it wasn't where we went wrong. Teachers and school administrators didn't understand why he would bang his head on a concrete wall. They wanted to know what switch they could turn to turn it off. They didn't understand why he had to have pencils that had sharp points and couldn't write with a dull-end pencil. He was one of the first Aspie diagnosis in our school system, so imagine our frustration with the special ed folks.

Thanks for the tray analogy. In all these years, this makes the most sense. We always had used a volcano analogy because different pressures would build up and then he would erupt over something most people would think was meaningless. When we looked at what happened over the entire day, it made more sense.

I can't say it gets better, even though things are going better than we ever imagined 10 years ago, but you celebrate the little advancements over the long term. Long term is relative, whether it's days, weeks, months, or even years.

 

[Schmeck]

I like the tray analogy too - but I wanted to point out that we all carry a tray and try to balance things on it. Think about the last time you lost your temper - was it really because of that one little thing someone did or said, or did you feel the stress building up beforehand? Perhaps people diagnosed with ASD do not feel the stress, or can't communicate that they have stress build-up until it is too late?

 

[holeceks]

I totally get what you are saying. My DS12 is Aspie, and I ask more than once a day..."why us?"!

Why do "normal" kids have to make fun of him? Why does he not listen/understand? Why does he chose to do something I told him 3 minutes ago he couldn't do? Why do parents of "normal" kids have to judge us as bad parents because my kid misbehaves (in their eyes)? Why do I have to resent them for judging me? Why does my DD9 have get watch other kids tease him and then feel it is her duty to stick up for him? Why can't people accept the differences and just leave him alone?

I tear up every time I ask the "why's". So, why do I keep asking the "why's"?