Seeking an Expert

Is there really an "expert" on autism.

I am skeptical.

How does anyone explain the mysterious? How can anyone look into the minds of these beautiful children and know ....

why they want to do the things they do?

why they NEED to do the things they do?

Why does my son feel the need to touch the world like he does?

Why does he put his hand over his ears at a football game while simultaneously smiling at the sound of the cheering crowd? He is not distressed. But something makes him want to tune out some of the sound.

Why does he squint his eyes when overwhelmed or nervous?

Why is he so fascinated by the repetitive motion of the little things? Why does he need to drop to the ground and watch the mulch drop from his fingertips when he could be climbing the playground equipment?

Why does he look away from me when he must know how desperately I want him to look ... at .... ME.

Why? Why? Why?

Why does he open up his mouth and make a sound so obviously indicating a desire to reach me, to tell me ....

something.

Why can't he put his lips together and produce the sounds he so desperately wants to say?

I can sit here night after night, and type away at this computer if I want to.

I can type for hours, well after the Cheezits are gone, and the possum who eats all the cat food has come and gone from my garage.

I can talk for hours to any friend kind of enough to listen.

But my son can't say a blasted thing.

And nobody can tell me why.

Is there an expert on autism?

Well, there are plenty of people who can describe the symptoms. There are people who can diagnose your child while sending you on your way with all the bedside manner of a sloth.

But there is no expert here in my living room. There was no expert telling me how to keep my family together. There was no expert telling me how to maintain my sanity while processing all of this confusion and hurt.

Maybe some day ....

the experts actually will know something.

Leah blogs at fruitypebblesfordinner.blogspot.com

Desperate

OK, so I haven't seen this blog for a while.  Living in my wonderful, detached bubble.  But it builds, and here I am again, feeling the pain of reality.

It was a pretty normal day, except He (14) hadn't taken his meds in the morning.  I didn't notice until it was too late.  (Am I going to need to make sure he takes them for the rest of his life?)  Life without Buspar just really sucks.  The "episode" was intense.  I don't even recall what it was about.  But It was enough for me to find a minute later to google "asperger therapeutic boarding school".

Seriously.

And at the time, I was totally calm and serious about it.  I mentioned it to hubby.  "I can't believe you would even think that."  At the time, I was like, well--why wouldn't I?  Seemed good to me.  In a school with other kids who understand and are also lonely and have no friends, living with them, exercising with them, food monitored and cooked for them.  Being taught things that maybe would be more "acceptable" because they weren't being taught by me or Dad.  Sounded GREAT!

Then yesterday, it hits me so blinkin' hard.  Failure.  Not good enough.  How could I relinquish my responsibilities to someone else?  I don't really want him to go.  I am just completely freaked out that the amount he needs to learn to function as a human is way too much for me to handle.

Has anyone else been tempted or actually sent their kids away?  (It just would have been a sememster or 2.)  I did meet one boy who had gone away for 2 years, not very far from home, and had come back having learned so much.  Maybe it's the contrast and maturity that you miss that makes it seem so??  Thoughts?

 

autism sucks: Facebook and the Aspergers Teen

http://confessionsofanaspergersmom.blogspot.com/2010/08/facebook-and-autisic-teen.html

Facebook and the Aspergers Teen

I have to be one of those moms who noses around in her sons business.  I try to do it discreetly so I don't totally piss him off. Now that school has started and he already starting to show some obsessive tendencies towards a couple of friends.  I feel it's in his best interest for me to know what's going on.  I periodically check in on his "facebook" page to make sure that he is staying appropriate.  Sometimes, he comes out of his room suddenly angry and I know that something has happened with a friend online.  If he won't talk to me, I trace his "facebook" steps to see what is going on.

Recently he reconnected with a friend "M" that he has know since kindergarten.  She was always very nice to him throughout elementary school.  They parted ways when he went to another middle school, but have met up again in the same high school.  She has a boyfriend and has made it clear that she would love to be good "friends" with my son.  He says he accepts that, and has even gone to church with "M" and her boyfriend.  They are Christian kids who seem to be trying to be inclusive with my son, despite some of his strange behaviors. He has started to talk about them a lot. I know that he is jealous of their relationship.  Since he has no edit button, he also made that clear to both of them.  Still, they generously let them hang out with their crowd at school.

Last night as the evening was winding down, instinctively I decided to take a peek at what he was doing on  facebook.  I found a chat log going.  Some dude was telling "K" to back off from "M" and her boyfriend's relationship.  "K" responded by ripping this guy a new one with every expletive he could think of. The guys language was teasing and taunting, with lot's of "ha-ha's", but no cursing.  Other friends chimed in on the conversation, but no one was out and out rude.  Still K-was cursing up a storm!  He must have been so proud of his curse word vocabulary.  Personally, I think cursing to express yourself shows a real lack of imagination and thought.  In my opinion it makes you look dumb! Especially when others around you aren't talking like that.


I've read in Ross Green, Ph.D.'s book "The Explosive Child"  which basically says, for children with Aspergers, cursing is like barking when you step on a dogs tale.  They're hurt or upset and they feel there is no other way to let you know just how much.  It's like an exclamation point for them. And of course since "K" lacks perspective, he doesn't think about how offensive it is to others who don't use that kind of language.  Believe it or not, none of the kids on the chat responded or used one iota of fowl language.   


It was really getting out of hand so I had to step into his room and as gently as possible said to him, "Son -I think you should really rethink the kind of language you're using on facebook.  I noticed that even though some of the boys are being rude, not one of them is using that kind of language. Not one.  Don't you think it makes you look a little weird that you're the ONLY ONE talking that way?"


"I don't care!"
"I think you should apologize because not only that boy is reading this but there are girls, and others who want to be your friends who are reading it, and may be offended by it."
"They don't care! I'm not apologizing to that jerk!"
"Yeah...well I understand how you feel, you may be making yourself bad."
\
He didn't agree to apologize.  I left the room.  Soon after he posted:

"I'm deleting my facebook account.  I can't be friends with anyone. This is not a joke.  I'm not coming back. And I'm never coming back to school either.  I'm just going to juvenille hall. This will be the last time you see me."

That was the sympathy card.  It worked...there were 14 replies -all of them positive.  Here are just a few:
 
"Dude what's wrong? Don't talk be talking about yourself like that! If you ever need someone to talk to...text me anytime before 10:30.  Then I have to turn my phone off."
"I'm here for you buddy!" (from a female...a cheerleader no less).

"Dude...don't worry about a girlfriend.  If you really want one, just be friends with them.  Almost every relationship starts by being friends. And if you EVER need someone to talk to I've got your back! Just get your schoolwork done, and let everything fall into place. God has a plan for evryone! Let his light shine through you."
"Don't delete it!"
"I'm here for ya!" (from another cheerleader!)
I was so excited, I couldn't help myself...I chimed in, "Wow! You are so blessed to have friends with such good advice!"  Three people "liked" my comment.

Reading these posts brought tears to my eyes.  I could just see God all over that page and in the hearts of those young people.  I knew at that moment that God has not forgotten us.  He is answering my prayers.

When I go in to kiss him goodnight I say, "Dude! do you know how blessed you are?! You have some real friends out there who really care about you.  Can you try to focus on them? I mean, you've got cheerleaders who are in your corner!  That puts you in a great place! Can you try to focus on that?"

And that was the prayer I prayed over him as he drifted off to sleep.

To read more of my stories check out my personal blog - http://confessionsofanaspergersmom.blogspot.com/

The Second Son

I have a child, a beautiful child. He has only just turned eleven and has been the funny, smart light of my life in the darkest hours. His compassion for his brother has been amazing, as has his tolerance. Until now.

This morning we are rushing to an emergency psych consultation for my second son. Not my first born Aspie, but my youngest... the one that was meant to be easier, happier, less troubled. We are having a tough time lately, my Mum is very sick, our business has suffered and teetered on the brink of closure due to the financial crisis, my oldest is hitting puberty, and I, myself, am experiencing the start of menopause. Whilst the family has been tested I can honestly say the love has not wavered. But maybe the attention has.

He is angry, seriously angry. Boiling over at the most minute things, hairbreath temper trigger. He is threatening to kill himself, and others. He tried to impale a ruler into his larynx a school, he makes threatening gestures to his friends, and at a birthday party this last weekend he told them all he was going to buy a gun and kill them all... and himself.

The really scary part is that he takes no ownership of this anger, these threats. It is always someone else's fault for not doing what he wants, for causing his reaction. We are at a loss, the school is concerned and powerless, friends shake their heads in disbelief.

I am pinning my hopes on this professional man and his history of helping my sons. If he cannot then I do not know where to turn, or what to do. I am scared. Really scared.

This was meant to be my easy child...

Getting to No

Although it may not be evident because of my a) $0 salary, b) lack of an office with bookshelves containing books that don’t all rhyme, and c) business cards that include the word “mommy,” I have an MBA. One of the things you learn in business school is the art of negotiation, and one of the books we b-school types read is called “Getting to Yes.” Tonight, my local mom’s group is hosting a speaker night called “Turning No Into Yes.”

Right now, I could give a crap about YES.

All day long, I say no. No playing in the dog dish. No climbing the bookshelves. No putting your hands in the fish tank. No turning on the faucet. No eating mud. No licking. (That last one is usually, but not always, directed at the dog.) Nope. Uh uh. Please stop. No thank you. No! My pleas fall on deaf ears.

I think my son understands no, but he simply doesn’t feel the need to listen to me. He has autism. And he’s three. And there is nothing about that combination that makes him want to behave. Even when Moe does listen, by say, getting down off the bookshelf/toy bin/filing cabinet, he doesn’t seem to understand that he shouldn’t do it again. So I sound like very negative broken record.

I don’t like to have to say no all the time. I’d love to do what the books say: be positive, redirect to a preferred activity. But Moe is very driven to do what he wants to do, and right now his number one preferred activity is climbing the furniture, followed closely by getting into trouble some other way. Even my neurotypical 16 month ol daughter, who is very verbal, likes to taunt me. She’ll go up to the dog dish, say (and sign!) “no!” and then proceed to throw the dog food onto the floor. Good times.

So getting to yes might be fine for some people. Right now, I just need my kids to get to no.

You can read more about Moe, his sister, and our obsessive compulsive dog, at my personal blog, Anybody Want A Peanut?

Seeing People Naked...

The first day of a new school year is always so exciting for me. I am thrilled to have the house back.  It's like, 'Oh my God -babysitting paid for by my tax dollars!' For 7 hours a day they are someone else's problem.  Doesn't that sound horrible? Sorry! It's true.  Although, not totally...it doesn't mean that I'm not going to get a phone call or an e-mail with some crisis or another.  Yesterday was no exception. 

My phone call didn't come until the end of the day when my eldest, who just started high school, didn't get on the bus to come home.  The special needs transportation left him and pretty much refused to come back.  He wasn't out there within 10 minutes of the bell ringing so they took off.  What exactly is "special" about this "special needs" transportation?  You have a boy who processes slowly.  It's his first day in a new school.  He's still feeling his way around and you leave him!  Because this school is out of our immediate area, this meant I suddenly had to pick him up.  Good thing I didn't have anything better to do.  I wasn't happy and neither was he.  He doesn't like the driver and his assistant anyway. (Which may account for why it took so long to get out there).  He says, "They act like they're drunk!" Which is code for -they're weird.  I must admit, I  have to agree with him.

By the time we get home he's pretty much in a rage about how much he hates the new school.  No one talked to him.  When he talked to someone they pretty much brushed him off.
"I have no friends! I felt sad and lonely at lunch! I didn't eat! The lines were too long! I HATE THAT SCHOOL! I'm not going back tomorrow!"

He went on venting for about an hour.  "I'm going to go curse people out on Facebook!" And you think that's going to help you make friends? Of course I use the logic -Rome wasn't built in a day.  "It takes time to make friends.  Give it some time. Make sure you're smiling.  Try not to look angry and sad." In other words...fake it.
 
After spending his entire school life (preschool-5th) my youngest started middle school. The words 'transition' and change are not favorites in the language of Asperger's.  So saying he was a little nervous is putting it mildly. Middle school is a big change for your average child.  Multiply it times 10 for an Aspergers kid.

"How was your day son?"
"It was horrible! I hate that school! Some kid said to me, 6th graders suck! And I hate that when we go to P.E. I'll have to change clothes and see people NAKED!"
"They won't actually be naked.  They will have on underwear, and they will be so busy changing, you guys won't have time to really look at each other!"
"I'm not doing it!"

I will of course work with the P.E. teachers and special education teacher to make some arrangement to help relieve his anxiety.   I sent e-mail to my older son's teacher asking her to get a peer to shadow him during lunch for a while, in hopes that he won't come home so angry and frustrated.

So is it so great having them back to school? Is it really such a relief, or just a whole new set of problems?

Seeing people naked -it's kind of funny coming from a kid who used to get naked as soon as he walked through the front door!  Once upon a time, we couldn't get him to keep clothes on....now we can't get him to take them off and definitely not in public! 

Picture taken before school.  I had to get the dog to trick them into smiling!

Check ouT mY personal bloG :  http://confessionsofanaspergersmom.blogspot.com/

Give Us a Break

My daughter has been having some behavioral problems lately.

I am not sure what to make of them.

I definitely am not sure how to respond to them.

With all the books on parenting these days, I don't think there is a single one that tells you how to parent the seven-year-old son with autism who does not talk, but, yet, has a lot going on in that sneaky little head of his, while simultaneously parenting the aforementioned child's four-year-old sister who just started kindergarten, is growing up in a single-parent household, and has more emotions than she knows how to handle, despite having a vocabulary that rivals that of many adults.

Yep, I don't think I am going to find any help on the shelves of Barnes & Noble.

Not any time soon, anyway.

Hey, maybe I just found my job opportunity.

In the meantime ....

How do I respond to the four-year-old who throws herself on the floor at the mall because she does "not have the energy to try on shoes."

How do I parent the four-year-old who tells me, "WELL, I just need YOU to cooperate with ME," after I tell her that I would really appreciate her cooperation during the shoe-shopping-venture.

How do I respond to her when she tells me that she is "done with" me, simply because I tell her she cannot get a new toy at Wal-Mart?

Keep in mind that I don't have a lot of time to ponder these questions while on the scene, because my non-verbal seven-year-old is there, too, and I can't take my eyes off of him for a second.

Sometimes higher-level-parenting has to take a backseat to reality.

I have a child who requires so much. He is walking through life with the physical capabilities of a seven-year-old, but the linguistic capabilities of an infant.

He can twist open the lid to a child-resistant-jar in a second.

He can turn on all the faucets in a bathroom, stop up the sinks, and leave the scene.

He can rise in the morning without anyone hearing, open a box of Popsicles, and eat them all, while leaving a few scattered about so that I am left scrubbing neon purple spots with carpet cleaner in the hope that the stains might disappear.

And, speaking of disappearing ...

I live in fear of it.

He cannot disappear.

My heart couldn't take it.

And I don't want to deal with police involvement and the resulting investigation by child protective services.

And so....

My daughter does not receive the type of responses she deserves.

She is not on the receiving end of a well-thought-out-parenting-plan.

She is, instead, on the receiving end of the do-the-best-I-can-even-though-I-am-stressed-beyond-words-and-feel-so-guilty-about-it-mess-otherwise-known-as-my-current-parenting-plan.

She constantly hears the phrase "in a minute" and she constantly waits.

She doesn't get to go to gymnastics class -- even though I know she would love it -- because she already takes tap and ballet, and I only have the energy to take her brother to the local rec center ONE night a week.

Oh, my, doesn't that sound awful???

Yes, I admit it. To take my daughter to dance class doesn't merely involve getting her dressed and ready and delivered on time. It also means taking her brother along. And keeping him busy and entertained and happy while we wait ...

In public.

And, even though I have been dealing with autism for several years now .... even though my skin is a lot tougher than it once was ... even though I am able to look people in the eye and tell them that my son "has autism" when the occasion requires ....

There is only so much I can do before I feel like crawling home, closing the blinds, and locking the doors.

So, my daughter has some behavioral problems.

How could she not?

I do, too.

Give us a break, world.

All of us. My boy, my girl, and, me, too.

We are doing the best we can.

Check out my blog at fruitypebblesfordinner.blogspot.com

Ooops

Ooops.... I am still trying to get this multiple-blogging-thing figured out, and I posted something meant for my personal blog. Sorry, you guys! Leah (fruitypebblesfordinner@blogspot.com)

AWESOME IEP PLAN!

OK, so he's in 8th grade, and we did a partial day placement, where he is taking algebra, science and lang. arts at the public school, then I do the rest at home.  I homeschooled last year, and this was meant to be a transition into high school, without pushing him over the asperger edge.  It'll still be a challenge changing his morning routine, but he's home by 10:30 each morning, and already done with his 3 major classes.  Still gets to see his homeschool friends, and is teaching a palaeontology class this fall to 9-14 year olds.

But here's the blessed new news!  He can do a partial placement in high school AND STILL GET A DIPLOMA, as long as it's in his IEP.  We won't have to pay Clonlara or such institution for a diploma.  Best of both worlds.  No lunch, free time, locker, bus (we're driving him), slip in for 3 classes, get picked up.  If he starts to lose it, he can use his "leave whenever I want to" pass.

Feeling good.  For now.
Tami
PS  Just got the new Susan Wise Bauer Ancient and Medieval World History books for high school!

Yay!

All of the archived comments came back.

Thought you would all want to know.

Carry on.

T. that chick who runs stuff around here.

CHILD FOR SALE... CHILD FOR SALE...

Now you lot would be racing in here thinking, "Oh my, she's finally lived up to her name and totally lost it. She's giving up her Boy..."  Well, no actually. I could just have well titled this one Organs for Cash, or Lottery Win Needed. Or:

This week we finally had our appointment with the Paediatric Psychiatrist. Yep, the one we teed up three months back. He insisted I have an appointment too. Things he ran through would have taken me ten minutes to fill out on a form. Then Boy 1 is met and spoken too. Surface stuff, though he notices some of the mannerisms, stims and quirks.

We walk out. To pay $490 for the pleasure. Yep. $245 for me + $245 for Boy. Yes, we get a lot of it back via Medicare, but I still cannot help but resent the extra appointment. If there had been a valid purpose/reason, great. But I am not there for revenue raising mate, really not impressed. Makes me question the ethics of someone, and that makes me question if I want them to treat my child. Not feeling positive about this one, that's for sure.

Better run out back to water the tree. Think we are gonna need it.


also blogs over at Meaninless Meandering from a Madmother, and 3 other blogs. Loves her boys to infinity and beyond.

Another Light Bulb

O.K. so I've been wining on my other blog, http://confessionsofanaspergersmom.blogspot.com/, about what a difficult summer this has been with my two sons.  The teenager is being well...a teenager.  He's difficult, belligerent and generally exhausting!  Despite my knowing that he has Aspergers, and being well educated on how that effects him, doesn't make it any less frustrating to deal with on a daily basis.

I went and signed him up for Movie Camp and Swim Team, in order to keep him from sitting in front of the computer all summer long, eating, gaining weight, fighting with his brother, complaining of boredom and generally grinding on my nerves.  He loves video editing and has started a little business making DVD's and slide presentations for friends, family and even some teachers at school.  Ah ha...he could have a career in movie editing! That will get him out of my house eventually! Let's sign him up for this  fabulous, expensive camp! (Actually there were others out there that were a lot more expensive.  I didn't totally loose a grip on reality and sign him up for one of those that lasted for three weeks and required sleeping away.) 

After nearly two weeks of fighting with him to get off of his ass and go...we're both exhausted.  Yesterday, I decided to give us both a break.  I offered to let him skip swimming to go hang out with a friend.  He looked totally surprised, "You mean we can miss today?"  "Yes, but only today.  That way, I can do something with your brother." Then came the shocking moment: "But I actually LIKE going to swimming. I like going to movie camp too.  It's just I'm so tired."

He has given me holy hell every single day, every single time I say it's time to go! Is he trying to drive me crazy? Is this some "vast right-wing conspiracy?" No, it actually is not.  The light bulb went on...this is just too much for him.  It's too much for me.  He is not a morning person.  The camp is at 9:00 a.m. and it's all the way downtown so we have to get up pretty early.  Not to mention, this week they bumped it up to 8:30 a.m. We come home and he has 5 hours of downtime before we have to head off to swimming.  He takes a nap and then transitions to working on a project on his computer and then, it's time to go again.

For an ordinary boy, this shouldn't be a problem.  For this boy, it's a disaster.  When things go wrong with your kids, doesn't the blame somehow come back around to our parenting decisions?  I over did it.  One activity at a time for this kid and if at all possible,  schedule nothing early in the morning during the summer.  At least not, if I have to be the one to take him.

The best part of his summer so far has been the sleep away Christian camp.  He was loved and accepted, made friends and came home with a better attitude.  Next year...I'll try to find a Christian camp that last all summer long!  Its sad to admit, but he really does much better when he doesn't have me around.  What do I know anyway? I'm just the person who gave birth to him.

Bragfest...

For those who do not follow my main blog, which I linked to my writing blog, on which I posted 12 year old Boy 1's narrative piece... go HERE , BUT ONLY IF YOU WANT TO. And you know you do. Truly.

Yes, I am very proud of him, and a little shell-shocked.



, very proud mother of Boy 1 aged twelve.

Ah ha!

Every once in a while, I see a glimmer of light and hope inside of "14".  Typically it appears that he's clueless when it comes to how other people are feeling, or thinking.  He's is very much self-absorbed, which is typical for most 14 year old boys, but for one with Asperger's...that's putting it mildly! The world is typically seen through a very narrow point of view -HIS! Who cares about what other people think?  It's all about ME! On an intellectual level, I know this.  Does it make it any less exasperating or annoying? No.

So he's asking me over and over again, not only about when I'm going to buy him this $500 dollar video camera.  That is the rant of the week.  He also ads in a little dose of, "When can my friend come over? Why don't you like him? Is it because he has special needs.  You think he's weird! You think he's annoying don't you?"  Have I ever said anything to that effect? Absolutely not.  Do I let him come over every time "14" asks? No I do not.  Have I taken him and his friend to the mall, out to eat, to 'Best Buy' to hang out, to the movies. Yes! Does he remember or appreciate that? No.

I tell my son that he plays a big part in why his friend can't come over whenever he wants.  "You fight with your brother on a consistent basis.  You make no effort to get along with him.  You annoy him on  purpose.  You get him spun up to the point where he's yelling and screaming and you want me to add to that headache by inviting your friend over who does the exact same thing? Why would I do that? Do you think I enjoy having headaches?!"

"I fight with "11" because he hates my singing and because he calls me fat!"  That is hardly the only reason he fights with his younger brother.  But let's take a look at that...where did it all begin? Well let's see you started this whole tit for tat insult flying with, "You have the ugliest teeth! I hate the way your voice sounds!"  Are these things that your brother can help or change? No.  You hurt his feelings, therefore, he finds a way to hurt your feelings.  This should be obvious, but for the mind-blind Aspie -it is not.

And here's the light bulb...the glimmer of hope, "I think I fight with him because he has Asperger's too, but he doesn't take any medication and he doesn't have a therapist." WOW! Is he right?  I don't know.  But at least he's thinking beyond himself.  I inform him that his younger brother doesn't quite have the same issues as he does.  He has no problem with focusing and behavior at school, therefore we haven't seen the need for medication.  Does he need a private therapist? Probably so.  I think what they need is a sibling therapist to come to the house and see the hell they put me through. I haven't figured out how to make that happen yet.

As his younger brother gets into the tween stage, he has become much more angry, aggressive and somewhat depressed.  It is something we need to address.  I explained to "14" however, that he is older and should be more mature and could really work on ignoring things if he wants to have the freedom to have a friend over especially, one who also loves to annoy his brother.  I explained that for now...I would like to see him continue to nurture his relationship with his friend (who by the way has his own set of special needs).  In order to do so, he has to do his part in making peace before we add more fuel to the fire.

I mean why would I do that?  I'm a good mom...but I'm not crazy!

I'm Drowning

I put a great deal of effort in to raising these two Aspergers boys, only to feel unceremoniously slapped in the face.  My entire day is devoted their care and entertainment.  7 a.m. rise and shine, attempt to have "14" do the same so that he can get ready for film camp that I spend a good deal of money for.  I am met with "I don't want to go! I'm very tired today."  "Yes...you're especially tired today because I want you to get up.  If we were all trying to sleep, you'd be up making noise disturbing those of us who want to sleep.  Let's go!"

He loves to give me hugs at the most inopportune moments, so I ask for a hug, from across the room just to get him out of bed.  It takes him 30 minutes to put on a pair of shorts and a t-shirt. I disappear to get myself together, distracted by the "Old Spice" guy who is on "Good Morning America" this morning.  Oh My God! He's so perfect.  I am smiling ear to ear just looking at him.  The best part of my day so far! When I return to "14'" is still laying in bed, dressed,  like he doesn't know what to do next.

I finally get him down stairs to eat a bowl of cereal.  We're out the door and in the car when he remembers he needs his IPod to listen too on the way.  I drive all the way downtown, listening to him sing, which is really music to my ears although he's off key.  It's just so good to not hear him talking about what he wants me to buy him next! I go up 3 flights of stairs to talk to the instructor at Film camp to find out what's been going on.  Has he been participating? Not really...but she hopes that when they get into shooting and editing he will get into it. He's more technical than creative.  I cringe thinking about how much money I'm spending for him to sit around staring off into space, not joining in the group.  I pray that it will pay off in the end when he gets to shoot the movie and edit it.

10 a.m. I'm checking out Facebook.  I see a post from "14" while he's @ film camp! "I don't want to go to film camp today. I'm tired!"  I am livid! He's freakin' texting while he's at this $200 a week camp! I'm going to kill him!

2 p.m. We arrive back home so that I can take my mother to get her hair done and the boys for haircuts.  They refuse to go together.  "11" refuses to go at all.  I can not leave them at home because they've been vehemently fighting (physically and verbally) over the past several days over the fact that "11" hates "14's" singing.  (I mean they seriously come to blows over this.)  "11" is told he has no choice but to come.  I let "14" stay home to relax after the long, difficult morning of sitting around film camp like a bump on a log.


6 p.m. is time for Swim Team workout.  Everyday, I'm met with resistance.  "I don't want to go! Why'd did you sign me up for all these activities?" 'Uh...so you don't drive me to the nuthouse with the constant fighting with your brother and telling me that you're bored!'.  This boy is twice the size that I am and I almost had to practically carry him inside the pool facility! He sees a girl and a boy outside talking and starts on a rant.  "I WANT A GIRLFRIEND! ITS NOT FAIR!"  "If you get inside and workout, you will look so good, you'll get all the girls!" "I shouldn't have to work my ass off just to get a girl!  They should want me for who I am." Yeah...a guy who walks around looking angry because he doesn't have a girlfriend.  Sure son, that's the way to get a girl. But hey, what do I know about the way superficial teenage girls think? 


I text his 22 year old brother to ask him can he please take his brother to swim practice tomorrow?  He needs encouragement from someone other than me.  I'm met with, "Me and my girlfriend have plans." "Well, can you at least call him and give him a pep talk?" No response...no call.  I reply, "Great! I guess I have to hire a big brother since you can't do the job!" 

8 p.m. I return home after this painstaking practice session.  I take "11" swimming at our neighborhood pool since he's pretty much been home all day with Nana.  After all, he needs to get his exercise in too!  Ask me when was the last time I got to go to Zumba or yoga.  I think it was before school let out.

10 p.m. I pour 1 part Pear Vodka 2 parts blueberry juice to keep myself from drowning.

Note: No one was physically harmed by the end of this day.  Although I sure felt like slapping somebody! 

cHECK oUT mY bLOG
http://confessionsofanaspergersmom.blogspot.com/

Really Not Good

As some of you who follow my main blog Meaninless Meandering from a Madmother would have seen that yesterday was not a good day, and had started with a not good night. What I neglected (chose not to) mention over there was the incident which triggered the bad night.

I am married to the calmest, most patient man in the universe, Big Boy. All along this autism journey we have been on exactly the same page with our children, agreeing on our methods, making sure Boy 2 does not suffer due to having an older sibling with ASD, believing in the ability of our oldest to grow into a functioning, happy adult. Well, most days anyway. But everybody has a breaking point.

The night before last Big Boy was helping/supervising both boys with their homework. And for the first time in over a decade, he lost his temper and screamed at our children. Not yelled, screamed. Now I am the loud, scream at them person in this relationship. I am the you get your arse moving NOW ranter. They are used to me and my Madmother ways, and usually respond quickly knowing Mummy has reached THAT point where we cannot push her buttons any further and we'll fall into line as if the last thrity minutes of ignoring/whining/arguing/cheekiness had never happened.

 I do think they deserved it. There are times they take full advantage of their placid Dad, and can be downright disrespectful. They just chose the wrong time this time. He is tired, stressed from work, unwell. He had had enough. And he blew.

Don't get me wrong, he did not yell abuse, it was more along the lines of "Enough! You both need to start showing some respect as I'm trying to help you here. This is not MY homework, it is yours and either you stop arguing and start appreciating me being here, or else you can just struggle through by yourselves..." But screamed at top volume of his grown man voice.

The problem is they did not expect it. The issue is that it truly scared them. The sad thing is that it pulled the emotional rug out from under their feet. Boy 1 was devastated, and did not stop shaking and sobbing for the next three hours. Boy 2 was saying "I'm numb. Is it normal to feel nothing? I cannot feel anything..." I am sure he was in shock.

I held them and tried to calm and reassure them both, but it meant a very late night and two boys who would not sleep without Mum lying close. Which is why I ended up on the floor, cold and stiff at 1am in the morning.

My poor, poor boys. All three of them.

We've moved! (Sort of)

EDIT..Don't worry, our comments are NOT gone. Google says to give it 24-48 hours and our comments should be back. Let's keep an eye on it, and if not, I'll give 'em hell. Others have had this issue, and it resolves itself once the servers sync. So I'm told. If I change the redirect back, the comments show up, so they weren't deleted. We'll give it some time. So.

What Google says

Hey, everyone! We are now officially official with am official URL that officially reflects us! Please update your bookmarks to:

Autismsucksblog.com

Your feed should still have no problems redirecting, and I THINK that links will also redirect blogspot here, also. But just in case, you could change them. Let's keep Google happy, eh?

We may be easier to find, now. (Autismsucks.com was parked by someone, so, sadly, couldn't get that one)

Autism Suckingly,

Tina, Chief Chick in Charge around here

How Embarrassment...

For those of you either too young to remember or not of Australian shores, the title refers to the catch phrase of a 1980's icon: Kylie Mole. It was then passed onto another Aussie idol: Effie from Acropolis Now. Google if you don't know...

Boy 1 is not happy. He is reaching THAT age where the hormones are taking over and thoughts are confused. His psych recommended we provide him some factual sex education material, before things went right off the rails.

We had (under his guidance) purchased two books for this very purpose: Secret Boys' Business (Fay Angelo, Heather Pritchard and Rose Stewart) and Making Sense of Sex (Sarah Attwood). When presented with both of these a year or so ago, Boy 1 looked at the covers (being a visual boy), blushed and walked away saying: "Oh no, those are too rude for me!"

Now it was time to try again. He read the first, under protest, and then only because I pulled the old Dr U said you have to card. We then asked him if he had any questions? Blushing, determined not to meet our gazes, he looked down at his shoes, and shook his head vigorously to the negative.

Last Thursday came and so did his appointment with his psych.

When asked by Dr U about his thoughts on the book and its contents... Well, I don't think this will last, but I have to admit to chuckling under my breath when I heard him say in consternation:

"Well, the whole thing is pretty disturbing really."

I'll definitely be storing that phrase in the mind vault for pulling out to use in later years, lol.

is a manic blogger at four blogs. The main two are her general ramblings and her derby blog. Oh, and she is mother to Aspie Boy 1(12&1/2) and Smart-arse Boy 2 (11 in a month).

Response to Kathryn's comment

I was going to post this as a comment in response to the “Why Autism Sucks: Chocolate Chips, Cheap Wine and a Big Ball of Poop”article, but one of the comments has gotten me so riled, I have to post as a regular article.

Richelle's a lot nicer than I am – I was bloody furious when I read Kathryn's comment. Kathryn says she has autism, but she is obviously verbal – and verbal enough to express herself in a coherent manner. One of my sons is neither. Kathryn, if you do have autism, you should realize that it takes many forms, and the form you seem to have is not one that would push me over the edge as a parent. One of my sons is high functioning, but is nowhere near as well spoken as you. He has had times when he wouldn't even venture out of the house due to anxiety. This I can handle. My other son, on the severe, non verbal end, is currently freaking out because the timer went off in the kitchen and I did not jump right up to turn it off; instead I finished typing the last sentence.

My mistake, because it is now 15 minutes later that I am getting back to this. Kathryn, did you have a mother & father & a stable home? My crappy ex husband took off 2 months after my boys were diagnosed (and has had no contact at all for the last 9 years) – I am doing it all on my own. I have no breaks, no weekends & holidays off, I have had to give up my job & career & have learned to live off of IHSS because no one else is willing to do what I do for minimum wage to take care of my boys. How DARE you tell me to stop whining & take responsibility! I went up against our school district & filed due process 6 times between the 2 kids and won each time before I realized I could do a better job homeschooling one of my boys and the money would be better spent on decent therapy than lawyers.

My non verbal son is currently going through adolescence and masturbating every chance he gets. The school district, the regional Center, the Behavioral Therapists – no one knows how to help him. He peed on his carpet so much that I had to rip up the entire carpet & redo the floors. He is also an eloper – I have padlocks on my windows and doors so he doesn't run off & get hit by a car, because he has no recognition of personal safety, despite years of therapy. Am I saying I wish he wasn't like this? You're damn well right I'm saying that! It is not all lovey white light and we just have to accept our children the way they are – it's the world that won't accept them, or take care of them after I am gone. My son will never function in the world we live in, and I am constantly trying to find the best place for him to fit.

I love my son, but yes, his autism is similar to a death sentence – without me, there would be no one willing to take care of him, and maybe it wouldn't be actual death, but he would be placed in an institution & drugged into compliance, so don't you EVER dare to tell me to stop whining & accept responsibility. This is my place to vent, and to find support & sympathy, well deserved and definitely needed, and if you really want to know what severe autism is like, you come on over & babysit for a couple hours. You could use the eye opener, and I could use the break.

Obsessions

Ah, obsessions. If you have an autie kid, you know about them. My son, Moe, has had obsessions since he was a year old. At first it was cars. In particular, one blue car from a parking ramp toy, but in a pinch any car would do. Then it was books and anything with letters. This was pre-diagnosis, so at the time we didn't consider them obsessions. In fact, we were very proud of our little man's ability to sit still for so long and amazed at how young he learned his letters.

Then came the electronic toys. Anything with lights and sounds could become all-consuming: the toy phone, followed by the shape sorter, the electric guitar and the zebra bouncer. Around the time my daughter was born, it was the Incrediblock. He would play with that thing, watching the spinning top go around and around at the push of a button, for 45 minutes. Not a typical behavior for sure, but certainly a coping mechanism for the changes that were going on around him, over which he had no understanding and no control.

After Moe's diagnosis, and the all-consuming shopping cart (also with lights and sounds) obsession, we removed all of these toys from the house. They would make appearances during ABA sessions as reinforcers, but for the most part they live in the garage. Occasionally, I will bring one out if I need Moe to sit still for a little while, say, during a haircut or doctor visit. I don't think these obsessions are harmful in and of themselves. Clearly, Moe gets something from the visual stimulation, so I like to allow him a little time with these toys, but they aren't conducive to social interaction.

Moe's latest obsession is water. He has always loved to play in the water, whether it's bath time ("bath" was one of his first words, although we don't hear it much anymore), hanging out in Grandma and Grandpa's pool, or splashing at the water table at school. So as summer approached, and I grew concerned about filling our afternoons, I was excited about playing with sprinkler toys in our backyard and going to some great parks in our area that have really cool water features.

But now Moe has just gotten tall enough to discover the water dispenser in our refrigerator door. Our fridge doesn't have a child lock, so I've been spending a lot of time trying to teach him that pushing the lever is not okay. My efforts so far have not been successful. Moe goes right over and makes himself a nice cold (filtered!) shower. Even as I get in his face and tell him "No!" he giggles and grins like he just discovered the greatest thing in the world. Yesterday, I got the bright idea to tape up the front of the door so he couldn't get to the levers. Moe didn't miss a beat, taking the bottom piece of tape right off, reaching his hand up, and letting it rain. We can disconnect the water supply, but I'd much prefer it if he learned to not do it at all, since I don't want him flooding other people's houses. Clearly, this is going to take some work.

Free Advice

I want one of those shirts that say, "Parenting advice not welcome unless you too have a child with autism." No, actually, I want a neon sign! I am fed-up with the self-proclaimed experts who have endless streams of advice about my child. One mother of three, jumps on my case about not getting my child out enough. She knows a child with autism who goes out every day. Out, in this case meaning to crowded places like malls and parades and the local pool.

It turns out, the child she "knows" (who is a teenagaer, NOT a two year old)goes to the donut shop with his mother every day. The child comes in, orders his donut and leaves. Sounds to me it might be some sort of social therapy.This same helpful mother also claims that if my child was surrounded by children every day, he would "get used to it." Right. The children she speaks of are her three boys. They are cute kids but they fight violently with one anoher constantly. I'm talking rolling on the floor all out brawls! They do not have autism. They are just underdisciplined. They climb on tables (yes the dining room table too), they yell at their mother and they have even slapped her.

This woman knows my plight. I am a 47 year old adoptive mother of an autistic child. My 57 year old husband has severe COPD and is beginning to exhibit signs of eary alzheimers. I am in the house 24/7 x 365. I go out to take my child to his doctor or to group. I also go food shopping. Where ever I go, my child comes with me. So, he does get out. Other than that I am at home. I get no 5 minute break other than when both take naps. I have lost all my friends. Who wants to be with someone so boring? So, any way, my husband recently started having some serious issues with his COPD. This wonderful woman offered to babysit so I could go to the hospital with him. Didn't she show up with her three children and a friend. Well, needles to say, my husband again had to go alone.

My body feels like it has been put through a ringer. I am tired and so stressed out. My patience are wearing very thin. I am telling people I love to F off! Funny thing, people still come to me with their problems. I used to care. Now, I am too burnt out. I cannot get respite, I can't afford what sitters charge. This is it for me for a long time to come. I just hope that when my husband passes, I will have found some way to be there for him. That is, if the aloneness of this whole situation doesn't kill me first.

Ah, The Holidays and Other Traditional Stuff...

Comin' to my safe haven to vent without the peering, searching, judging eyes. We are on holidays. As WE all know, this is not quite the happy family experience of others. Change is not easy. Being out of even our not-so-strict routine is not easy.

It has been lovely but difficult. The worst bit though has been the catching -up-with-friends-for-meals. Otherwise known as the traditional breaking of bread with friends. We tried it once with HIS godmother. She is wonderful, understanding, and has a boy in between my two. And still doesn't get the FOOD issues...

"You said he eats steak, we have steak..."
Yeah, but it is when it is cooked by HIS Dad, in a kitchen, and even then if there is any dark bits or chewy bits... aah, no.

Then we had dinner with a friend two nights ago. She is very understanding. Her brother has schizophrenia, she lived it. So when he refused to eat the spaghetti bol because it had "too much oregano...", she was amazing. But I was stressed to the max.

SO, at the last leg of our holiday, when I knew limits were getting way beyond stretched, when we had a two or more hour drive there and then another two or more hour drive to here, where we are spending the night, I refused A MEAL with friends... Well, I had really good reasons. I think.

Sadly, because of this they bailed. Even sadder, she is an aide for ASD kids. And my second child's Godmother. We still planned on a couple of hours catch up, just no food involved. Easier, happier, less stressful for all. But somewhere, somehow wires were crossed, or messages mixed, or maybe they just felt we were not doing the right thing by refusing lunch or dinner.

For us it was not a choice, it was the only way we could go without total meltdown. Him and me.

God, this is hard. And impossible to explain to anyone who does not live it.

who rants elsewhere. Frequently.

Why Autism Sucks: Chocolate Chips, Cheap Wine and a Big Ball of Poop

When you cap off your night with two glasses of Merlot and a bunch or raw chocolate chip cookie dough, chances are the day has been rough.

Autism. Really. Sucks.

And my rose-tinted glasses are frequently cracked.

Some days, they simply cannot be found. And I don't even bother to look that hard.

Why did autism suck today, you might ask????

Well, there were the typical, every-day reasons. My non-verbal, six-year-old son screamed in frustration about something that still is a mystery to me. He carried out his current stim with just as much intensity as he did the day before. I literally had to sit on him in order to cut his toenails.

And, for some reason, for the first time in, well, a long time, he pooped in his pants.

His swimsuit, to be exact.

At a city pool.

Thank GOODNESS (I won't say "God" because I am not in the mood to bring God into any of this), he was OUT OF THE POOL. And I noticed it as soon as it happened./

But when the "bright side" of things is that you didn't have to tell a life guard to clear the pool on account of your six-year-old's poop ...... well, is there REALLY much of a bright side?

Oh, and let me not forget, I was at that city pool with my autistic son, and my four-year-old daughter, and well, NOBODY.

My son has done great taking himself to the potty at home since we really hit the potty-training business just after his fourth birthday. And I am so glad. But, STILL, STILL, I can't count on him to communicate the need to go when we are out in public.

And the kid is a pee fountain.

I take him to pee more frequently than a chain-smoker lights up.

We had been doing so well with not having accidents, until recently ....

And when the accidents start, they seem to come in big numbers.

But, REALLY, POOP???? And at a pool????

I am Ms. Automatic-pilot when there is such a situation. I am not good at many things, but if there is an autistic child with a poop crisis in public, I am your girl.

So, when I saw the face, and confirmed the existence of a wet, messy poop, I just went into action.

I took both kids to the bathroom immediately and got my son to the potty where he finished his business. I checked out the swimsuit and realized it was NOT worth saving. Good-bye new swim trunks. I cleaned up his messy bottom and took him straight to the shower, where I scrubbed the both of us down with soap as if we were about to perform surgery. I went back to the bathroom stall and cleaned up the toilet. And, because all of the spare clothes for my son were in the car a good distance away, I let him wear my tee-shirt. (I had my swimsuit on, people, so don't get any ideas).

It was all a pain. A great big pain. Shouldn't we be well past this?

I certainly let my son know just how unhappy I was with the circumstances. He wasn't very happy either, my poor boy.

It makes me frustrated.

And it makes me sad.

Sad for me, because, yes, I sometimes allow myself a bit of self-pity. I had no idea this would be what I was in for when I first learned I was pregnant.

Sad for my son, because, after all, he deserves the most sympathy. He is the one who struggles to understand this world, and without the benefit of ANY language.

And sad for my daughter, who sat through this whole ordeal on a bench in the bathroom by herself.

She is plenty old enough to understand that her brother should not be having these problems.

She is sophisticated enough to realize that her mother is S-T-R-E-S-S-E-D. And, that, in turn, brings stress to her life. She actually worries about me. My four-year-old daughter worries about me.

Oh, lord, just pile it on.

I am so very, very sad for my daughter because there are many moments in her life, just like this one today, where she sits or stands alone, waiting .... just waiting.

Waiting for me to tend to her brother's problem, need or outburst.

Waiting for me to prompt whatever form of communication I can get from him, even if it is just eye-contact, a nod of the head and a "yeah."

Waiting for me to finish working with him -- because I feel so much guilt if I don't spend at least some time trying to help him accomplish something, even if it is as simple as focusing on a puzzle.

It simply is not fair. There should be someone else on the scene. Someone focusing on her. Or sharing the responsibility of focusing on her brother so that I can sometimes get to focus on her.

Oh, how I would love to just focus on her.

But, even when I get a moment to do so, I am so tired.

So very, very tired.

I am not what my kids deserve.

Either one of them.

And I just don't know if I ever will be.

I have my doubts.

But, man, can I clean up the poop in a crisis.

Is there a career in that, by the way, because I sure could use a job.

Leah is a single mom of two children, one who has autism and is non-verbal. She writes at fruity pebbles for dinner.

Bullies Nearly Sully Disabled Child's Sunny Weekend

Like many 11 year old boys, my son loves to ride his bike. He loves the freedom of the road, the challenge of finding cool neighborhood bike routes, and the wind in his face. Biking is his ultimate freedom . And that freedom includes neighborhood rides to the sports card and memorabilia shop and the local park. Great exercise, exploring one's community, and catching some sunshine was the goal for Saturday, isn't that enough?

Apparently, for some bullies in a car, it was not enough.

As my son waited on his bike at the light on a busy street close to our home, some teen boys in a car yelled at my son, called him names, and pelted melted cupcakes at him.

What were those kids thinking? I think I know. I suspect it went something like this: "Hey, see the fat kid up there on the bike? Let's throw this at him. It'll be funny!" (Or something said far cruder, I imagine).

The cupcakes were thrown at my son's face, but he blocked the throws and it splattered over his favorite t-shirt and shorts, his right arm, socks, and shoes. The perpetrators drove off instantly. My son was humiliated and upset. He called home on his cell phone (yes, he has one, a move that at first we thought was crazy to do for someone this age, but now take great comfort in the fact that he has one). He told his dad what happened. My husband jumped in our car immediately and drove the few blocks away to get our son. After loading up the bike and our son, they drove to get my daughter and I, who happened to be out on a neighborhood walk at the time, to tell us what happened.

And what happened would upset any child, but my son is not any child. He is on the autistic spectrum  (high functioning) with some added conditions. Life is not easy for my child. The fact that he can even ride a bike (despite some impaired fine and gross motor skills) is a big deal. He's worked hard, despite huge challenges to earn his independence on his bike. He has to work harder, plan further, and deal with some issues that no child should ever have to deal with. While he is a big kid, medications to treat his conditions, pack on weight, something he struggles with every single day. The hardest part of it all and the most difficult to stomach, is that my son has been the survivor of bullying in the school system and elsewhere multiple times. He dealt with the following: being called dumb, slow, weird, disturbed, and fat. Some of these cruel peers from his mid-elementary school days, did receive punishment for their poor behavior. Most didn't. I even had some of them do this right in front of ME, in a bold and uncaring move. Even adults in my community, who were either unwilling or unable to have understanding, said inappropriate comments within an earshot of my child. Each day is work for my son. Each day is work for our family. Each day presents challenges.

And now this.

But there is a good news story in all of this. Really.

After being very upset when my son returned home, he did something rather unexpected. He handled the situation very maturely and wisely. He said, "I am mad about this, but I am sad, too." He remained calm, despite it all. In the past, my husband and I would have expected a tantrum, tears, depression, and/or anger due to his conditions. Not here. Although he did say, "I don't think I want to ride my bike anymore." It was then, that as parents, our hearts got crushed. My husband was even reduced to tears when our son had left the room, he was so shaken. We were so angry, sad, and disappointed. We wished we would have caught the horrid people that did this and had a word with them. We wished life wasn't so unfair. We wished, since that this happened on a busy street, that some caring adult would have stopped to help, offer a kind word, or something. This did not happen. Nothing happened but injustice and cruelty. And even though we worked hard to show love, kindness, and support to our son for the rest of the evening, it was still hard to breathe and think. We wondered if this would be a big setback for him and this worried us to no end.

But it was this 11 year old,  developmentally and learning disabled child that turned it around in less than a day.

First thing this morning, my son declared, "I am going to be riding my bike A LOT." And this is what he did! He went out on ride after ride, stopping back at home to refuel with food, water, rest,  love, and support. And time after time, we sent him back out again as he wished, seeing a boy more and more restored. He returned more and more tired, thirsty, and sweaty, but triumphant. It was pure joy to see this strength of purpose and sense of being.

You see, he took back HIS community. He took back HIS streets. He took back HIS freedom and fun. He took back the fact that despite disabilities, he had the RIGHT to live his life. And he taught us to do the very same in the face of adversity.

So, to the punks that assaulted my son: you LOST. To the adults in my community: if you are a parent, grandparent, relative, neighbor or someone who cares about children, what can you do to break the cycle of bullying for any child? How can you stand up to adversity on behalf of children? How can you send a message of love and understanding? These questions should be treated, just like the boy who wouldn't stop riding. Keep riding, keep going, and keep going strong.

Thanks, Son.

 Kim authors Gritty City Woman where this post also appears, because, well, it has to. It also appeared in my local newspaper community blog (hence the last paragraph).

It is Our Life...

Reading a blog, and a post about the stresses of a mum, I was struck by a comment she made:
"And then I look around me and see how I don't have it anywhere near as bad as some others. And I think I should be grateful that he is healthy, (overly) verbal, mainstream schooled, intelligent, capable, wonderful, loving, helpful and all the other good things that make him who he is .. and I am grateful."  Read here.

It makes me think of a conversation I had with a friend a while back. It was during a very bad time with Boy 1, and I was at my wit's end. And so I talked to a friend.
MM: "I do not know what to do to help him, I am so worried about what he will do."
GF: "Look, I'll tell you something that will help you feel better. Our really good friends have a three week old baby after trying to conceive for years. Sadly, he has a serious heart issue and has to have surgery tomorrow. The risks are high and he may not survive it, but without the op he will die within the next few weeks.
MM: "And why would that make me feel better?"
GF: "There is always someone worse off than you, and it makes your problems seem less in comparison?"
MM: "It is sad, yes. BUT that is NOT MY son, and NOT MY life. It does not lessen what we are going through or help in any positive way. It comes down to what you live with, not what you hear."


We should never have to justify our pain/worries/concerns, or belittle their magnitude in OUR lives. Everybody knows there is always someone worse off than you (and wouldn't it suck to be the one with the WORST life on earth?), but that in no way relates to the emotions of our own lives.


So don't say sorry, or qualify the bad times, we get it. And we are here to listen, not judge.

blogs/rants over at Meaninless Meandering from a Madmother and is wife to Big Boy, mother to Boy 1 (Aspie) and Boy 2 (smart-arse), and daughter to Wise Woman.

Just Some Random Questions

Just a few random questions thrown out for discussion.

1. Recently, in perusing the cyber world on autism issues, I am seeing more and more adults on the spectrum themselves, that say that using the phrases high functioning and neurotypical, are not appropriate, and even, offensive. Hmm...The reason stated is that if you are considered high functioning you are NOT autistic but have some other condition. The argument for neurotypical is that NO ONE is neurotypical. We all have anomalies, differences, however small. No one has the perfect brain. So, my question: so then, what are we supposed to say? Are there some new words out there that I am missing?

2. Does anyone have the beat on the pulse of actual autism statistics? How many people are affected? I see numbers all over the map! What is the most accurate? When people ask me, I'm kinda taking a guess.

3. I am a part-time homeschooling parent (well really, we tend more towards the unschooling). Just looking for words of inspiration I suppose. How do you maintain your energy? How do you keep things fresh for everyone?

Okay, I'll admit, these questions are kinda big, but they've been circling in my brain.


Kim, who poses gritty questions right HERE on Gritty City Woman.

A Prayer for Sleep

I've been lucky when it comes to my kids and sleep. Sure, we had the typical rough few months with both of my newborns, but at four months old, we took a hard line. We sleep trained. We let them cry it out. We stuck to early bed times and a good nap schedule. And it worked. My kids learned to self-soothe and fall asleep on their own. Sure, we had (and still have) the occasion rough night for teething or stuffy noses, but most nights they slept twelve hours a night. My kids were good sleepers.

I tried not to brag about it at mom's groups meetings and playdates. While others were talking about their sleep issues, I tried to keep quiet about how good I had it. I would offer suggestions as to what we did, trying to sympathize but also feeling like there must be something they were doing wrong - something we somehow did better. Well, ladies, it's payback time.

The sleep monster has struck our house, and good. It started about 6 months ago. Moe, my 3 year old with ASD, started waking up in the middle of the night. We'd hear him playing, often giggling. He'd stay up for an hour or maybe two, and would eventually fall back asleep. I was a little concerned because it made it harder for him to wake up in time for his 8 am therapy sessions, but by the time I consulted with our OT on some strategies to help him get back to sleep, he had grown out of it.

Then, about a month or so ago, Moe started to have some trouble falling asleep. The behavior was similar. He'd giggle and shriek in his crib. He was clearly over-stimulated and it started taking longer and longer for him to fall asleep, sometimes up to three or four hours. Again, this made for difficult mornings. We consulted with our OT, made sure we had a 30 minute wind down bedtime routine, tried the calming techniques. Nothing worked, and after consulting with our doctor, started him on melatonin before bed. It works like a charm at helping him fall asleep.

Relief! Problem sovled! Right? Right?? Wrong. Now we have a new problem. Moe is once again waking up in the middle of the night and having trouble falling asleep. On three separate occasions - enough to qualify as a trend in my book - he has been up for over five hours. Yes, dear readers, my once-was-a-great-sleeper child is waking up at midnight and not falling asleep until five in the morning. I feel like I have a newborn again. I'm so tired I can barely remember my name.

Everything is worse when we are tired. Moe's behaviors increase and speech decreases. My patience and ability to look at things with any measure of perspective goes out the window. I crave chocolate chip cookies. It gets harder for me to hide the bags under my eyes. It isn't pretty. Oh, cruel and vengeful gods of sleep, I beseech you. I am at your mercy. Please, let this pass.

Jen is thankful for a full night's sleep last night (Kaynahorah puh puh puh, knock on wood). She writes about the joys and challenges of raising a toddler on the autism spectrum at her personal blog, Anybody Want a Peanut? Follow her on twitter @wantapeanut.

Throw in the Towel with me

A few weeks ago, I came here one day and found that it'd been a busy day.

Not one, but three posts. Very similarly sucky posts. I do mean that they were about the sucky parts of autism, not that the posts sucked.

I had to go google "phases of the moon" to check that it wasn't a full moon causing it. 

It wasn't. It was close to being dark of the moon, though, if you really want to know. And it was all very dark here.

Then I found Tina and Madmother plotting (in the comments aisle) to run away to a desert island together.

Mmmmmm, dreaming of desert islands, packing suitcases and throwing in the towel made my day feel less sucky.

Right then, I resolved to post on Autism Sucks and invite everyone to dream with me. Resolve is cheap, and action is slow, I suspect because Tina did in fact run away with Madmother, and wasn't answering emails for a while, but I finally got here.

I am proud to announce...

 Desert Island Day

Here's your suitcase.

(It's one of those magical Mary Poppins ones - bottomless. There'll be no excess baggage charges either.)

We are running away from everything that Sucks.

I'm bringing (reprise):
Cocktails (and wine, and whisky, and oh, just everything alcoholic)
Chocolate (one of those magic, endless Tim Tam packets would do)
Books (to be read uninterrupted)
Laptop with internet (to keep in touch with sane people. Do desert islands have broadband?)
Adult food (you know, with spices and textures, and plenty of gluten)
Bubblebath
Personal masseur
Camera (for taking beautiful photos of sunsets while strolling)
Bikini
Sarong (for covering the bits that hang out of the bikini if you have children and are not a supermodel)

... and I'll throw in the towel.

What will you bring?


I am Lisa, and I can be found in A Different Brainspace  unless I've run away again, in which case I'll be on a desert island somewhere, under the weather.

Punching Bag

Rant on.

What would you choose? A couple of bruises, scratches or some other boo-boo, or someone yelling nasty words at you constantly?

I’ll take the bruises, scratches, and boo-boos, thank you very much.

In the early days of my son’s diagnosis, he became a bit of a hitter and kicker. I was typically the targeted punching bag (he rarely did this stuff to others; thank God as it was bad enough for me and my husband, so fortunately no one else was in the mix). At 11, he’s grown far better with this physical behavior. It still stirs the autism pot once and awhile, but thankfully it’s short lived and medication evens the playing field.

Last week, though, in a tantrum moment (worst we’d had in some time), I took a hit in the face, like a slap. It wasn’t too bad and when my son came out of his autism world and took a trip to my world when the anger haze lifted, he was overly apologetic and remorseful. I appreciated the apology, but I still felt worn down, beat up, and dirty.

It’s the words. My kid’s words feel like getting hit full blast with sharp-cornered bricks. They hurt worse than a slap, that’s for sure. And it’s not the typical smarting off, backtalk, or pre-adolescent crankiness. Nope, this ranks right up there with pure verbal abuse (laced with some God awful expletives). Again, I am the punching bag here as well (Dad gets some too, but I am the primary caregiver during the week, so I take more sadly). We work really hard with him on dealing with this vitriol with a variety of techniques we’ve learned from his medical and educational teams (and former family counselors, I say former because my kid refuses to get behavioral therapy and pitches a fit in their offices). Regardless of the trying everything including total honesty ( I feel hurt when you say those things, here’s why, etc.) it doesn’t work. In the meantime, I am feeling physically and mentally exhausted. Mind you, I don’t have this every day. But enough. Even if it’s just once during a period of a couple weeks or a month, it’s ENOUGH.

Some relatives took my son recently for a long outing (of course he’s an angel with them). I did not miss him. I did not think of him. And I don’t feel an ounce of guilt for saying that. And I don’t feel bad I said this in an open, public forum either.

Rant off. Thank you.

Come visit my tired but trying to have fun self and get down to the nitty gritty with me right HERE.

trivial...yet huge...why.

Shaking inside, walking around the house as a madwoman. Yelling at anything crossing my path, tonight...my poor dog. My big gentle giant seems to just be in the wrong place at the wrong time....again and again. Why...why cant my son tell me where it hurts, Why cant i get across to him that I'm only trying to help.

Why does this damned fever keep coming and going, and why doesn't he want me?? He wants daddy, and he's sure to let me know.

Shaking inside...pacing about...."why is the frigg'n air not working again?!" This then leads to....finding and picking out everything i HATE about my house, forgetting all the things i love about it. "You know what the problem is i bet...plumber told you to leave the vents open, you didn't" Of course i know its not my husbands fault its just part of the cycle, these events hurt everyone. Why....the hell does he still love me??

Does he?

Tonight....tonight is a bad night. My son needs to see a doctor and I cant take him. Three of us holding him down and still no exam could be preformed. He needs an exam badly. "ouch" grabbing various areas of his body...lately his genitals.

Tonight, i feel so lost.

I feel inadequate as mom.

I feel undeserving of love..

I feel undeserving of this rant. This is nothing....nothing to so many, yet tonight...for me, this is huge, and i don't get it..

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• No witty title, just a simple and heartfelt goodbye Bob (sendchocolatenow.com)

Having to do it all on my own

I think that's the hardest part in raising two 13 year old boys with autism - I am literally responsible for everything. As a single mom who's lousy ex husband left 2 months after the kids were diagnosed and has not made any attempts to see them in over 8 years or more, I have to do everything.

I have to make the decisions regarding medication, treatment, therapies, I'm the one fighting the school districts and Regional Center for services, I sign the IEPs, I clean up the messes (literally & figuratively), I reinforce positive behaviors and provide consistency even when I'm so dead tired I'd rather just hide in the closet than deal with another negative behavior, but know that if I don't, it'll be months before we get back on track; in addition I'm also the only one providing the household income, paying the bills, providing food & all the other typical parenting jobs.

If anything doesn't work out right, I am the only one who gets blamed. And someday, I may be the one who has to decide if one of my kids will have to go live somewhere else for his safety. Gods, wouldn't I love to push that decision off on someone else. I think I'd like someone else to blame for a change.

So, What Do You Say About Your Life?

A lot of times, I read and hear directly from families affected by autism that people just don't understand. I've uttered this myself, even to people close to me in my life. It's the truth. So my questions for discussion are:

How do you explain what it's like being an a parent/family member/guardian of an autistic child?

How do you help people understand? What kinds of illustrations do you give, analogies do you form, comparisons do you come up with?

Do you ever run through a typical day with someone who is learning about your life, whether they are close to you or not? What is the reaction? What is the response from them?

My take? I explain that with an autistic child there are issues every day. Every day. Some days may be very mild and not a big deal. Others may exhaust. And some others may crush your soul. There's lots of emotions, good and bad, and there's lots of things you must remember and think about. It's not organized or predictable, necessarily. I could (and sometimes do) go further than this with specifics.

I also share the positive stuff. I mean, I have two great kids! One is just more fragile and is more work.

Your take, please?

Standoff at the school gate...

Today our routine was altered as we left home to pick up two of K's friends to take them to school. Last friday he had a monumental meltdown when we dropped them back home after school and he couldn't go in to play. So this morning I thought that I would prep him early about picking them up in the morning and then dropping them home in the afternoon. There, my friends, began the negotiations...

"Can I go in to play at their house after school?"

"Not really mate, your sister has dance this afternoon"

"ARGH, I HATE going to dance! I don't want to go there and sit around and wait, I want to play at their house"

On and On it went until finally a compromise was reached. He can play for half an hour (while his sister goes to dance with another Mum) and then we will go there to pick her up at the end. This hopefully will be compromise enough for him.

So we pick the boys up from home and I pull into the drop off zone at school and out they jump. The boys run off and K drops his jacket. As he stops to pick it up they have run into the school without a backward glance.

There stood my son, looking at the school, looking back at me and then......eruption!

"I DON'T want to go to school today! this is a no school day for me! NO, I DON'T WANT TO GO!"

For 5 minutes I put him inside the gate only for him to exit it again screaming at me. Yelling things like, "I don't want to go to the DUMB school and learn the DUMB lessons" . Parents shuffled past us. Some hugging their children closer as they made a wide girth around us. One Mum offered to take him, tried to talk to him but he was too far gone, I thanked her for the offer as I struggled to hold him to me.

He threatened to run away. He got out of my grasp and he ran! I ran and caught him. I couldn't take the kids out of the car, his sister did not have socks on and brother no shoes. We were only meant to drop him off and then come home. So what could I do?

I took him to the car, we drove to the office and I got his teacher to come and get him. As she asked if he was ok I mentioned the threat of running away, I asked her to watch him today. He was never ever done anything like this before. Never tried to run away, never refused to go to school like this.

I have no idea what is going on with him. Perhaps it is the middle of the term and he is hitting his coping limit for school? I don't know, but I wish that someone would pass the manual this way so I could work it out! The recent increase and intensity of meltdowns/ tantrums and now threatening to run away.....what is next? :(

My son K was diagnosed with Aspergers middle of last year, he is 6 years old. We have been thrown into the deep end and some days it takes all of our energy just to stay afloat! . I'm Jen and my blog is Jemikaan!