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Showing posts from September, 2011

Tales From The Crib

Things heard in my house of late.

"You can stop now." Said with admirably droll humor by my ten year old. I guess he doesn't like my singing much.

Me: "Hey come here."
The three year old: "I can't. I'm watching TV." Those of you with old school parents are no doubt flinching as you contemplate how things would have went down had you said that to your parents at any point in your life, including now.

This wasn't said by anyone in my house but it could have been: "Look I pooped a dolphin!" Potty training is always an adventure.

A Few Words of Wisdom

Sage advice to parents of autistic children:
Life is for living. Even (and perhaps especially) when your child is autistic. PLEASE get out there, have fun, enjoy life, enjoy your kids, don't spend your life, love and treasure exclusively on therapies. Go fishing. Go swimming. Take a hike. Volunteer. Sing. Play. LIVE! And while you're out there, look for ways to help your child with autism to join in the fun. Use your imagination, and help your child with autism to use hers. Introduce your child to his world, and to the people in his world. Help them to get to know and care about your child. It's the community that, in the long run, will make or break your efforts to help your child succeed.Yes ma'am! Read the whole thing. Via LB/RB.

Thankful Thursday

Today I am thankful for/that:
A good first outing as I make a new career for myself.Apple picking season!Somebody else is taking care of the clogged drains in the house.Laughter.Technology. When it works it's great!Freedom.Experience.What are you thankful for?

Autistic Self Advocates and Autism Parent Advocates Continued

The conversation continues. This latest installment I call, What Happens To Disabled Adults When Parent voices Are Considered The Only Ones Worth Listening To? Nothing good.
I could not get a single solitary service from either of these places. The CIL barely knew what autism was; they dealt mostly in physical disabilities and they were less than helpful in filling out forms or narrowing choices down for housing or anything -- things I desperately need help with. And the ARC?

Oh god, the ARC. Let me tell you what they said: “we usually deal with clients' parents.” I was there because I very suddenly had no parental or other net. But they wouldn't help me, even a little, because my parents were very much not in the picture. They told me that I was too smart for most of their stuff, but they wouldn't help even a little with anything else because they interface with parents rather than clients.

In those six months, I did not fall through the cracks -- I was shoved into the cra…

Tales From The Crib

Things head in my house of late.

A couple of exchanges between me and the 15 month old:
"Are you ready for bed?"
"Hmm?"
"Are you ready for bed?"
"Hmm?"
"Are you ready for bed?"
"Hmm?"

And:

"Why are your pants wet? Were you in the toilet?"
"Hmm?"

Amazing how quickly he has mastered the art of playing dumb.

More between me and the 15 month old:
"I'm putting you to bed young man."
"Don't do dat."

"What are you doing in the oven?" That one was me.

"Your hands are filthy!"
"I just washed 'em!" Declared the 10 year old. Surprisingly his hands were wet, but still filthy.

Autistic Self Advocates and Autism Parent Advocates: Updated

There's an interesting dialogue going on at The Thinking Person's Guide to Autism between a autism parent advocate and an autistic self advocate.

The Self-Advocate/Parent Dialogues, Day One: Zoe
The Self-Advocate/Parent Dialogues, Day Two: Robert Rummel-Hudson

Parents and self advocates are often at odds within the autism community each seeing the other as having entirely different agendas. For my part as a parent of autistic children I see my job as being to raise responsible autistic adults. As a parent advocate it's my job to educate the people around myself and my children about the need to value and respect the voices of my children and those like them. Parent advocates and self advocates need to figure out how to be on the same side otherwise society will eat both groups alive, so to speak.

Update:Part three of this conversation is up, The Self-Advocate/Parent Dialogues, Day Three: Ari Ne'eman

Not Dead Yet!

What the diabled have to say about themselves, Not Dead Yet

ABOUT NOT DEAD YET

Since 1983, many people with disabilities have opposed the assisted suicide and euthanasia movement. Though often described as compassionate, legalized medical killing is really about a deadly double standard for people with severe disabilities, including both conditions that are labeled terminal and those that are not.

Not Dead Yet was founded on April 27,1996, shortly after Jack Kevorkian was acquitted in the assisted suicides of two women with non-terminal disabilities. In a 1997 Supreme Court rally, the outcry of 500 people with disabilities chanting "Not Dead Yet" was heard around the world. Since then, eleven other national disability rights groups have joined NDY in opposing legalized assisted suicide, chapters have taken action in over 30 states, and we helped put Jack Kevorkian behind bars in 1999. In the 2003-2005 fight to save Terri Schiavo, twenty-five national disability groups joined …

Tales From The Crib

Things heard in my house of late.

The ten year old at his conspiratorial best, "Hey mommy, come here." He was trying to talk me into letting him play games on my computer.

A bed time exchange with the nine year old:
"Would you like your pillow?"
"Hot dogs, please."
"Do we have any hot dogs?"
"Use telephone, please."
"I don't think I want you using the telephone just yet."

Moooommmmmeeeeee! I hurt myself!" wails the three year old brandishing the injured body part.
"Awwww, do you want me to kiss it?" I ask showing appropriate motherly concern.
"No," she pouts as she makes me inspect the injured body part.
"You just needed to tell me about it?" We've been down this road before.
"Yeah," she's still clinging to me.
"Feel better now?"
"Yeah," and off she goes to another adventure...until she needs to tell me she's hurt herself again.

"Maybe she forgo…

Thankful Thursday

Today I am thankful for/that:
Bubb J's budding skill with the spoken word. Between using his Dynavox and using his organic voice he's worked so hard to get where he is. He leaves me speechless.What are you thankful for?

The Right Way to Think About Autism

To mind my this is the only viable way to view autistic individuals. Wonderful, beautiful, gifted, challenged, a gift from God.

Mike Huckabee and the Colsons: Beautiful, Christian Autism Segment on Fox News
I love the commitment to family and to love beyond oneself that faith often awakens in others. This segment from Mike Huckabee's show on Fox News demonstrates how Christian values can open up a deeper and more meaningful conversation about people with autism than what we usually see on TV.

The story of how Emily Colson and the people of her congregation figured out how to make her son Max not only feel included, but actually be an important part of their community isn't just about feeling good-- it's a great model. Start with the part that works well, then expand from there. Find what the autistic person can do and let him do it. Pay attention and create opportunities based on what he expresses interest in.
and this is from someone who describes themselves as a cranky…

Tales From The Crib

Things heard in my house of late.

"I have to take your temperature. I have to take you temp," said the 3 year old to her 15 month old brother. She just had her yearly well-child check.

"Momma momma momma momma!" "Shawchit!"[Baby speak for "chocolate."] Baby boy has got his vocabulary priorities straight.

"Would taking the box out on the porch be humiliating?" I'm torn between pride that my 6 year old has a substantial vocabulary and concern that she even knows that word and how to use it.

"Underwear underwear underwear underwear underwear underwear underwear underwear underwear snuggie underwear underwear." The 9 year old messing with his Dynavox. Sometimes I think he's making music with the words.

Tales From The Crib

Things heard in my house of late.

"No don't pick my nose!" I don't know who was trying to pick her nose but the three year old was not about to let it happen.

"It was not a baby gorilla! It's a baby yeti, abominable snowman! It is not a baby gorilla!" The six year old correcting the three year old on...something or the other. Those really know how to have an argument.

"Don't do that." The fifteen month old repeating one of his nana's favourite phrases. Usually right after he's done something he wasn't supposed to do.

"Get outta the frigerator," said the nine year old via his Dynavox. He spends a lot of time lurking in the refrigerator like any growing boy should. And we spend a lot of time trying to slow the rate at which he is eating us out of house and home.

Thankful Thursday

Today I am thankful for/that:
We got out of hurricane Irene's way in time.The really nice off duty Delaware paratrooper medic who showed us a way around the hurricane evacuation traffic backed up on the highway through Delaware.Those who were spared by the storm.Help for those the storm didn't spare.Apple picking season.What are you thankful for?