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!

I am alone

So very very alone. And I do not think I can do this anymore.