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Same memories . . .

LadyM — Sat, 04 Jul 2009 03:52:04 -0500

I remember loving the firefighters having their waterfights and looking forward to it every year. When I was very little, we would watch from the parking lot in our car so it wouldn't be so loud.

Lady M blogs at http://www.empress-m.com/

I've sooo been there...

zazupitts — Fri, 03 Jul 2009 22:58:38 -0500

....minus the snake, of course.

Or....getting the panicky phone calls from a parent who has had another "accident," and needs help with a cleanup. They feel embarrassed about the situation, and acting annoyed will only shame them.

Putting a calm, matter--of-fact tone of voice really helps, doesn't it?

I would just recite, "That's what mops are for!", get out the rubber gloves and start scrubbing.

Your parents are very lucky to have a daughter like you!

Living in Caregiverland

www.Caregiverland.com

Oh yeah. Been There. Worse Month of my Life.

zazupitts — Fri, 03 Jul 2009 15:43:20 -0500

Sorry about the negative subject header...but yep...moving two ailing parents out of their overstuffed home was an experience!

The biggest problem: my mother was a packrat who refused to even think about having a garage sale for more than 20 years. She had a large 3-car garage and attic filled with ..stuff. Mostly it was items she had bought from estate sales and never even bothered to use or open up the boxes of purchased items. And lots and lots of used 50-year-old plastic butter bins.

So, we worked out a three pile system:

a) one pile for items for the Salvation Army or to give away to family.

b) One pile to keep.

c) One pile to throw away.

The piles were placed in the garage, where Mom could inspect them and make sure that I was not trying to throw anything behind her back.

Some tips:

a) Hire a local waste management company to leave a large dumpster container on the premises to haul away when you are finished. Pay for double the size you'll need.

b) Stick the Elders (in this case, my Mum) in a lawnchair in the garage, and let them "supervise" you. It gives them a sense of control, but won't fatigue them.

c) Remind them what a good dead they are doing by giving away all that stuff to the poor.

d) Ask relatives to help...in exchange for getting first rights for picking over the pile to be thrown away or the charity pile.

Good luck!

Living in Caregiverland

www.Caregiverland.com

excellent post

emily_raphael — Thu, 02 Jul 2009 19:14:35 -0500

Thank you, thank you, thank you. I'm passionate on this subject as a former DAN! parent who tried chelation and who has to live with the regret. When I put up a website for a local parenting group I got flak from a parent who wanted me to post links to "biomedical" sites. I refused and we got into a little showdown re the site's policy. I ended up essentially abandoning the site rather than give equal time.

I think a big problem is still that post-diagnosis, parents are often sent into the hinterlands with no real advice on how to proceed. We're often still thinking in terms of a medical model of treatment, b/c we've been to a medical professional, most likely, for diagnosis. First-line providers and pediatricians need to be better and more proactive about giving parents guidance. If we're left with only a diagnosis and no support, a lot of us go into research mode, and it can feel good: the "Lorenzo's Oil" fantasies, the Ph.D. in Google, etc. We are parent warriors and we will rescue our children. It's a satisfying narrative, but it wastes time and resources.

Children With AUTISM And Fireworks!

ksao — Thu, 02 Jul 2009 15:29:28 -0500

Parents of children with autism have an especially difficult situation to deal with every year as the 4th Of July approaches.

Although the use of fireworks is outlawed within city limits in a majority of American communities, many residents take that law rather lightly as fireworks have already been going off in my neighborhood throughout the day for a few days now.

Although our nation's independence is most certainly a thing worthy of annual celebration, I request (beg!) of you to consider the severe affect fireworks have on a large percentage of person's with autism.

The struggles of raising a child with autism are countless. Our days can be very long and frustrating. These days are even longer and more frustrating for our children, innocent victims of a neurological disorder with no known cause or cure.

As the parent of an autistic child, I do everything in my personal power to control the environment in which my child lives. I do this in order to encourage his development and to prevent his exposure to circumstances which cause him to "meltdown" as his only means of self defense against the mental, emotional, and physical trauma his mind & body perceive as painful and/or dangerous when it comes to ordinary everyday situations that have no adverse affect on most of us.

One thing I can do in regard to the overwhelming noises created by fireworks on the 4th of July is to put him in the car and drive around with the radio on for several hours to limit his awareness of the explosions.

I cannot however drive around all day, every day AND evening leading up to the 4th, or the days that follow. All I CAN do is hold a shaking, screaming, terrified little boy in my arms and cry with him as we struggle to get through these few days of personal hell.

When it comes to fireworks, he doesn't understand what they are, and he doesn't understand why I can't stop it.

Imagine Dustin Hoffman's character in the smoke alarm scene from "Rainman". That is how my child reacts to the sound & vibrations of fireworks. Unlike the scene in that movie, I cannot provide instant relief to his suffering.

It is MY responsibility to deal with my child's developmental issues. My family's problems are not yours to solve. I cannot demand that every citizen of this country give up a long standing tradition of celebrating the 4th Of July with the use of fireworks simply to protect a handful of citizens who are severely bothered by them.

But as the mother of an adorable little boy with a smile that lights up the lives of everyone he meets, I have to at least ask that you consider limiting your use of fireworks to the 4th only.

And if that alone seems like to much to ask, may I please beg of you to not set off entire packs of black-cats all at once. Those are by far the most trouble causing fireworks for us, and I imagine the same holds true for most families of autism.

If you could see my child's reaction first hand, you would know why I make this very heartfelt request.

If you think water boarding is an unacceptable form of torture, you haven't seen anything until you see a child with autism in the midst of an uncontrollable meltdown in reaction to fireworks.

A single nights exposure to fireworks can set back my little guy for days. Does your pet go into hiding because of fireworks? If so, you know that sometimes it takes days or weeks for them to re-emerge and/or act "normal" again. My son goes into hiding.....within himself. Any recent advancements we may have been able to make are suddenly gone. We cross our fingers and pray that we can get him back.

Please, enjoy this wonderful and amazing holiday in celebration of the country we are all blessed to live in ! But I urge you to explore other celebratory options over the use of fireworks. Or rather, the EXTENDED use of fireworks. Maybe just do them at night. As it is, we are dealing with this problem from the moment we wake up until we finally collapse from shear physical and emotional exhaustion at night.

Thank you for taking the time to read this, and a BIG THANKS to those of you who will make simple modifications in your July 4th plans in order to make a HUGE difference in the lives of some precious little people!!!!

I'm sad for his family.

CantHardlyWait — Thu, 02 Jul 2009 12:57:39 -0500

Biological or not, Michael was their father. As bizzare as he was, he was their father. Black, white, cosmetic surgery, no cosmetic surgery, the king of pop, not the king of pop, to those kids... no matter who or what michael jackson was, he was their father.

Thank you!

M Kennedy — Thu, 02 Jul 2009 10:23:26 -0500

You are too kind, Catherine. We're thrilled to have so much good feedback. We're also looking forward to more e-mail from people who think the site serious.

I find backyard fireworks very odd

sassymonkey — Thu, 02 Jul 2009 07:51:17 -0500

Seriously. You see, you can't buy them where I grew up so the only fireworks I ever experiences were the big mega ones on Canada Day. When I hear that people put off their own it kind of blows my mind.

When I started going to my friends cottage in Vermont, we shot them off the dock. It was weird, scary and cool...but I can't imagine ever playing with them on my own. Scary.

Sassymonkey and Sassymonkey Reads.

tweeted and facebooked. :) I

navi_ — Wed, 01 Jul 2009 17:13:15 -0500

tweeted and facebooked. :) I actually managed not to get sucked into the DAN stuff, but part of that had to do with not having the money to even if I wanted to, and the fact that my first turn was to check the electronic resources for the library I work for for peer reviewed material. I was oh, lovely, I can't afford 40 hrs a week of ABA.... did't know about all the resources I qualified for through our community mental health department.

The antidote is education!

toni_lapp — Wed, 01 Jul 2009 15:17:56 -0500

Thanks for sharing your personal experiences. Autism can be a devastating diagnosis, and parents often cling to promises held out by unproven therapies -- especially since there is so little research out there. As an editor of an online magazine (www.spectrumconnection.net) that supports families affected by autism, I've gone to many autism walks and conferences and have always been wary of exhibitors peddling programs that promise a "cure."

First off, autism needn't be the calamity it's presented to be. Perhaps parents wouldn't be ripe for the claims of these modern-day quacks and charlatans if they knew this.

Second, if we form a bloc and share information, new parents might not fall victim to these programs.

BRAVO, Shannon!

I Have Things — Wed, 01 Jul 2009 12:07:21 -0500

I am SO glad you pushed through and finished this! You rock, girl.

And you're absolutely right. One of the things I always tell people who are following what I think may be cult-ish, spurious lines of medical reasoning is to keep in mind this old scientists' saying: The plural of 'anecdote' is not 'data'. I don't care how many people tell you about how their sister's boyfriend's cousin did well on this regime or that supplement...until it's been subjected to rigorous and widespread scientific scrutiny, it's nothing but rumor.

They are HIS KIDS

Southerngirl — Wed, 01 Jul 2009 10:40:19 -0500

How a family is created is not important. That they are family is. It does not matter whose biology these children have, the person they knew as daddy is GONE. Never to return again. I was 33 when my daddy died (just like Micheal of sudden cardiac arrest) and I can still dissolve in tears 7 years later. I cannot imagine being so young and losing my parent. This is one part of this story I hope just goes away. These kids are too young for this mess and in this day and age thay can follow this crap as it plays out and it will be recorded for eternity in case they would ever like to put this behind them.

I think in all of the gossip that comes out we tend to forget that these are real live PEOPLE with families and people who love them. No one exists in a vaccum. We have to ask ourselves if children are acceptable collateral damage from the need of trashy details.

Michelle

I blog at http://www.mommycan.blogspot.com/

Great post. A must-read

Squillo — Wed, 01 Jul 2009 10:15:27 -0500

Great post.

A must-read for all new "autism families."

That site is hilarious. I

suzyjenkins — Tue, 30 Jun 2009 15:28:19 -0500

That site is hilarious. I need to post my cousins photo from last years holiday cards. They were all wearing camoflouge (including the 4 year old and 6 month old baby), and a dead dear with blood dripping from it's nose. They are all smiling, and the photo is priceless!

I love holding babys, I sure

KylieKay80 — Mon, 29 Jun 2009 17:24:39 -0500

I love holding babys, I sure hope everyone has a great time