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.

She's screaming again, it must be Monday

Autism. It inhabits my house, every part of it. Sometimes, I can't think. And if I can't think, I can't write. Part of the problem is that it's Monday. But it's also just...life. Every time I sit down to put my thoughts on paper, some crisis hits and I have to break out the proverbial fire hose or do recon. I have so much to say, but I cannot get my thoughts in order. Chaos reigns supreme in my house. As I write this, my youngest child is sitting here alternating between, "I don't care what you say!" over and over again, and "EVIL!" and just screaming. There is only so much that you can listen to this before you start to tune it out. And don't tell me to try to make it better, nothing does. It is Monday, after a particularly busy weekend, and this is par for the course. Albeit, a little louder than usual. Such is autism in my house.

As I write this, my son is in his room egging his sister's behavior on, and trying to see how far he can push me. He is supposed to be writing an essay, but unless I stand on his neck, figuratively speaking, that's not going to happen today. He just slithered past behind the couch thinking I didn't know he was there. Now, he is making faces at his sister. Again, he thinks I don't know. I am about ready to pounce on him so we can work on his double-digit multiplication, so he is trying to maintain a low profile.

I had to resume this post after I dealt with JBean. She was out of control. Hitting me and throwing Legos, not enough to hurt, but enough to be really annoying. I finally picked her up and deposited her in her bed, with her screaming, "You're hurting me! I really wasn't she was just overly sensitive. I tucked her into bed, with her weighted blanket, including her arms. Think: swaddling a baby to calm them. I sat next to her with my legs over her, not my weight, just my legs. She was screaming, but I know her well enough to know what calms her.

After a bit, she was quiet, and I could see the comprehension shine in her eyes once again. I picked up the closest stuffed animal, which happened to be a multi-colored patchwork elephant, and told her to hold him. Then I asked her what color she was feeling. She pointed to red. "So you are angry?" She nodded her head. I told her it was good that she could tell me how she was feeling. Then I pointed to white. "This is peace. It's a good feeling, and if you add it to the red, you can end up with pink. Do you think you could be pink?" She nodded, her eyes wide. "I could try, " she said.

Then she pointed at purple. "What's that, " I asked. "it's 'I'm Sorry," she said.

And she was.

Crisis averted, peace restored. At least until lunchtime, anyway.

But this? Is why I can't write.

Tina writes on her own blog, Send Chocolate Now! and is a featured blogger at OC Family,and Orange County Moms Blog. Autism Sucks is her brainchild, because, well, face it, sometimes it does.

Mom, Sorry I Was Such a Gark

There is a cupboard in my kitchen that houses all of my office supplies like staplers, tape, envelopes, and the like. I can always tell when my son gets in there because I hear things fall and clatter to the floor. I can hear the tape being ripped off the roll like it's being strangled, and the cupboard door slams open and shut probably three times. Very hard. Not in anger, but for lack of finesse. I know I will walk down to a royal mess like pens missing caps, papers spilled all over the floor, and paper clips dumped from the box.

Today, though, I don't mind.

My son is making me a card for Mother's Day and I don't care about that mess. Other messes demand more attention, care, and love.

You see, we've had a tough week together. Every conversation was tense and strained, each outing turned into an argument, and every action got slapped with dash of impatience, a pinch of anger, and cups of frustration.

By the weekend, the pain eased and we said our apologies to one another. I admitted the autism was kicking my ass and he readily said the autism was kicking his ass. We were in loving agreement. However, he said he wanted to tell me more in his card.

So, he slid the card under the bedroom door. It was simple and sweet, but one part was rather odd. It read, "Mom, sorry I was such a gark. Huh?

I tried re-reading it and sure enough, it was written clearly: gark. So, when I quietly strode into my son's room to thank him and hug him, I had to ask what a gark was (while praying it wasn't some new-fangled slang that was dirty or vulgar).

He looked at me funny and said, "I dunno, what's a gark?"

"Well, it's what you wrote," I said and I showed him the card.

He laughed and said, "No, no, no. That's the word jerk. So much for spelling!"

It was one of those small moments, that a Gritty mother warrior and her Gritty warrior son, had a feeling of brevity and lightness.

My dear boy, sorry I was such a gark, too.

Onward and upward to those Gritty Tacomans and all the other Grittys out there! Kim Thompson likes to get gritty HERE on her blog!

Happy Mother's Day To Some Amazing Women!

As they kick and scream, we hold them.

As they face adversity, we fight for them.

As they get older, we hope for them.

As they are, we love them.

We are mothers.

We are fantastic, wonderful, incredibly strong women who are as flawed as the next human, but are as resilient as rock and as rebounding as rubber. We may fall but we always get up and will be by our children's sides as long as we can draw breath.

is also found randomly rambling at her other blogs.

Happiness???

I know this blog's general theme is to express how hard it all is.  All of it.  I do get that.  But can I just take a minute and say that I think we are actually....happy.  This is what I am so incredibly grateful for:

medications---for him and ME (especially for me)

Each member of our family.  They are all great, but so different.

Faith, God, support from church

our house, and my car.

home school activities, groups, families, classes, curriculum and flexibility

friends and extended family

prayer

my gift of organization (which I also hate at times)

my aspie-friendly community

my netbook and cell phone

maturity and age, time

Apparently I wasn't as okay as I said I was

Last week, over on my personal blog, I wrote a post about assessments. About how I'm not going to let it get to me this time. About how I know that assessments only matter to the ones who are doing them, and that I'm going to be all zen, and barely even look at the results. They are a necessary part of getting access to services and that I know what my son is capable of, no matter what some standardized test says. Heck - I should want him test even further behind so we'll qualify for more! Okay, I didn't actually say that last part, but I'm pretty sure I was thinking it when I wrote that post. Then Friday happened.

Moe is aging out of our Early Start services, so he's been having exit assessments from the Regional Center and entrance assessments by the school district who will take over. On Friday, one of the psychologists from the RC came to observe him during one of his therapy sessions. Our ABA program director accompanied her. So the poor kid is going about his business with four adults staring at him. And of course he doesn't want to do much of anything. At one point, the psychologist - we'll call her Jennifer because that was her name - looks at me and says "Does he have any words?" Like she's never seen an autistic kid before. So she watches for a few more minutes, makes some comment along the lines of "Well, I've seen enough" and leaves. I felt like he, and I, had just failed some test.

Then, our program director pulls me aside and wants to warn me before our upcoming exit meeting that Moe's scores on the social/cognitive part of his assessment have gone down. I probably could have handled that, except I had just heard the same thing from his speech therapist the day before. We had our explanations: we started with a different baseline, understand more of where he really is right now, blah blah blah. But what I was really thinking was, "So what have we been doing the last year?" What has all the struggling and crying (mostly me), hiding in the closet (mostly Moe), 6 hours a day of people in and out of my house, putting my dog on Prozac, and me never getting out of the house been for? According to the tests, nothing. Less than nothing.

After lunch, I brought Moe to his school district entrance assessment. They had already met with my husband and I and asked us all the same questions we've answered 17 times but I still never really know the answers to. (Does he understand it is dangerous to run in the street? I don't know, I've never let him try. It this is a trick question?) This time, I just dropped him off for an hour. When I picked him up the school psychologist told me that they couldn't get through the whole thing and that I would have to bring him back again this week. And I'm not sure why, but that was the last straw. I lost it. Not right there in front of the school secretary and the six year old looking for a band-aid, but later, once the kids were finally in bed and I could get in the shower and safely hide from anyone who might suggest I need an assessment myself.

Jen also writes at her personal blog, Anybody Want a Peanut, and at the Silicon Valley Moms Blog.

Whiplash!

Break out the neck brace, I’ve suffered whiplash, autism style.

Autism whiplash is a phenomenon in my household where my 11 year old PDD son has a “good streak” and then it turns bad on a dime. What constitutes a “good streak?” This is when there are LESS issues than normal and/or the issues that are experienced have a QUICK resolution. I mean, really, with autism, I’ve never had an issue free day with my son. However, if it’s a soft day, with less, that’s terrific. A good streak can last a day or two, maybe a week or two! Once I got the royal treatment with nearly a month! Wow! So, this is a good thing so far, right?

Yep, and this is where the autism gives me a gut punch. We are rolling along well and BAM! It’s like getting rear-ended in a car without warning.

Case in point. My son has a great deal of difficulty setting foot in the school’s threshold to start his day. Between the anxiety and quick anger, it is an ordeal. But sometimes, school CAN go smoothly. So, recently, my son had a good streak with getting to school and he was doing pretty well staying there. This had been for a week. My husband and I also noticed that he was having really good behavior at home (more cooperative, helpful, kind). We were feeling pretty good and hopeful. So, one day my husband took my son to school. This is a big treat for my son (because usual my husband is at work and can’t take him). My son adores his father and tends to behave a lot better for him, than me. So, hubby takes our boy over to school. Things are going well and the conversation is upbeat. Dad delivers son to teacher and notices that son has an odd look on his face. Without warning, our son attacks his father in front of school staff, starts hitting, and calls his father dirty names and was viciously verbally abusive. My husband was horrified (this rarely happens to him) and removed our son from school. Bad streak ensues. Exhaustion sets in. Hope sinks.

Whiplash.

The autism has pulled this trick on my son and our family on and off this week. Good streak and then snap, it’s broken. Usually it comes on quick and strong.

Let’s discuss. How do you fellow warriors cope with whiplash? How do you swim in the muck of a let-down?

Kim Thompson's blog, Gritty City Woman, is dedicated to bring out the grittiness in all of us!

School Blues

This is so very hard. I sit here at just after 3 am in the morning unable to sleep for worry. He is unravelling before my eyes. Two horrific days at school, and Monday was a holiday. I bumped into his teacher yesterday at the local shops, but knew it had been a bad one. Any day when his friend meets you at the gate in tears because she fears he will run away as he threatened is a bad one. The workload is horrific. Three major assignments this week, and the usual homework on top of that. This is Grade 6, for hell's sake... not high school. Others are suffering too, but they do not place the enormous amount of pressure to achieve on themselves he does. The perfectionist, always craving the A's, never accepting less.
His teacher told me a parent has complained about him, and the disruption he is causing. I can understand their concerns, but what the hell are we meant to do? He loves his school and is terrified he may be asked to leave, and yet he cannot seem to control this upsurge of emotion. I think it is time we asked about medication to help with the anxiety, for none of the tools he has are of any use.

I am being tough on him, hard on him, pushing him to use all he has learned over the years to help himself, but am I making it worse? Should now be the time to tread lightly, or will he use that to let go off the little grip he has left?

I do not know how to help my child. I think we are all going to break. God help us.

A , lost and bewildered in the wee hours.