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Prepping for Families with Special Needs Children

by: SusanC

Sat Feb 09, 2008 at 03:31:59 AM EST

Request for interview, with 'Exceptional Parent' Magazine
SusanC :: Prepping for Families with Special Needs Children
At the National Emergency Management Summit, the ReadyMoms booth received a lot of interest from attendees and speakers alike.  One of the speakers, Rick Rader MD came up to us and we had a really interesting and useful discussion about preparedness in general and families with special needs children in particular.  Here's Dr Rader's bio, from the conference manual:

Dr Rick Rader is the Director of the Morton J Kent Habilitation Center at Orange Grove in Chattanooga, Tennessee where he is responsible for preparing for the future medical problems of individuals with neuro-developmental disabilities.  He is the President of the American Academy of Developmental Medicine and Dentistry and on the board of the American Association on Health and Disability.  He is the Editor in chief of Exceptional Parent magazine and has served as a consultant to the National Council on Readiness and Preparedness regarding the special needs community. He was the first appointed Special Liaison for Family Health Concerns at the President's Committee for People with Intellectual Developmental Disabilities and has a Fellowship in the American Association on Intellectual and Developmental Disabilities.  He has served as a consultant to three Surgeon Generals on healthcare issues and disabilities and is a member of the National Academy of Medicine.

Dr Rader is the editor of the Exceptional Parent Magazine.  During the conversation with Dem and myself, we brainstormed how best to get families of special needs children to become aware of the need to prepare, and to be inspired to do so, given they already have so many challenges.  Dr Rader shared his experience that it is often best to just put the ideas out there, and let the audience make whatever they can of the information, cos you never know where something might happen.  There have been times when you can spend a lot of time and resources with really high-powered people, and then after a lot of effort nothing comes of it, and then there are times when quite accidentally something triggers something else, and a chain reaction is born.

I was delighted with those thoughts, as they parallel my own experiences.  One suggestion was for him to write about us, the ReadyMoms experience, of how parents can help themselves and each other.  He wanted to interview me for his magazine.  I said of course, I'd be delighted, but suggested that it may be even better to directly interview more grassroots parents (since I'm not the best or most typical prepping parent, to be honest) as to how they got themselves started and prepared, and how they work to spread the preparedness message in their communities.  He also thought it maybe worthwhile if there are families with children with special needs who have already started prepping, if we can hear from their experiences, and maybe share some of that with the readers of Exceptional Parents magazine, in hopes that it may inspire some of them to take action.

So if anyone has any prepping stories involving families with children with special needs, if you are willing to share them, you can either post them here, or contact myself, and I'll put you in touch with Dr Rader.  

And if we don't have such families among us, maybe it's time we ask ourselves why, and what we need to do about it!

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the presentation given by Dr Rader
in the summit was on "Special Populations: Vulnerable, Silent and Compromised - Disaster Planning for Citizens with Intellectual and NeuroDevelopmental Disabilities"

All 'safety concerns' are hypothetical.  If not, they'd be called side effects...

slides from his presentation
are available here http://www.ehcca.com/presentat...

All 'safety concerns' are hypothetical.  If not, they'd be called side effects...

[ Parent ]
This is a very vulnerable segment of the population.
My son is a special needs child.  He was born with Joubert Syndrome, severe cerebral palsy, brain damage, and respiratory problems.  We have been prepping for him for over a year, including purchasing a generator to use to refill his oxygen tanks when there is no power (he uses oxygen every night and when his oxygen level falls below 90%).  In addition I have provided his school personnel with information on prepping and pandemics.  This portion of the population deserves special consideration, because their needs require tremendous efforts during the best of times.

"I am opposed to any form of tyranny over the mind of man."  Thomas Jefferson

thanks, history lover
Would you be willing to share some of your experiences and insights and encouragements with the readers of Exceptional Parent magazine?  

All 'safety concerns' are hypothetical.  If not, they'd be called side effects...

[ Parent ]
Sure, anytime. n/t

"I am opposed to any form of tyranny over the mind of man."  Thomas Jefferson

[ Parent ]
thanks, and
you got mail!

All 'safety concerns' are hypothetical.  If not, they'd be called side effects...

[ Parent ]
that's wonderful and thank you!
The hope is that others will be helped.

[ Parent ]
Well, this might not be terribly helpful except to point out a potential problem.
Children with autism spectrum disorders have a tendency toward excessively sensitive skin.  Items of clothing are often chosen because they are soft to the touch.  Tags are most often removed because of the extreme irritation to these children, irritation which can manifest itself in behavioral problems.  You would be surprised at the disruption in the household when such children's anxiety is increased due to this sensitivity.  If we lose power during a pandemic, the potential to make SIP far more unpleasant exists in households where families can't use clothes driers.  Some tips for making line-dried clothing/linens softer without using a clothes drier might help, or tips for choosing clothing made of fabrics that remain soft when hung on a clothesline might also be helpful.

I know it seems minor, but it may be one of those practical things that could be easily solved with proper attention in the planning stage.

Millions for defense, but not one cent for tribute!

flubergasted, no, that does not seem minor at all.  Please share more ideas like this if you have them!    

GetPandemicReady.org - non commerical website with practical ways for families to prepare.

[ Parent ]
flubergated ... not just Aspergers
Lots of kids with those sensitivity issues.  I think a lot of kids go through it at some point in their lives.  Their wee brains are making those connections so fast that anything thing distracting can become a major cause of overload.  I know my toddler is just now outgrowing "tag irritation" now that he is four.  I stopped buy shirts with tags for a while 'cause the little booger would just rip them out and do all sorts of damage to his clothes at the same time.  (sigh)

Which brings up another issue.  Some kids with special needs can be unintentionally distructive or get into the cause-effect cycle without being able to make the jump to the cause-effect-consequence thought process.  

This could take the form of pulling wall paper off the wall, pulling fibers from the carpet or rug to watch them "run" or doing the same things to clothes, etc.  

They can be awfully hard on their clothes for various reasons because of this.  So, clothing repair options might be something that needs to be thought of.  Replacements can't be purchased at the store and some clothing repairs might actually 'cause the sensitivity problems that flubergated noted.

Hemming tape and other types of interfacing might be one way to deal with "string" issues on clothes or curtains or bedding.  My neighbor used to seal all of her son's seams with clear nail polish because that kept a "fray" from catching his attention.  They have this stuff called "Fray Check" that is softer than clear nail polish but it will need to be reapplied periodically and the clear nail polish is usually a one shot deal.

Never doubt that a small group of thoughtful, committed citizens can change the world, indeed it is the only thing that ever has. -- Margaret Mead

[ Parent ]
you could try
making good material choices to begin with.Waffle weave cotton and cotton blends,arctic fleece,good quality flannel,soft jogging fleece,sweaters made of cotton blends or not-scratchy synthetics-that kind of thing, rather than fine weave cotton and jeans.Even fabrics that line dry fairly stiff can be 'roughed up' a bit to soften them-kind of mash and scrunch and work the fabric in your hands for awhile and that'll make a big difference.My son had severe eczema when he was younger (thankfully quite mild now!)so comfortable clothing has always been a challenge for us and we can't use any scented detergent or fabric softener either.When he was little and we had to line dry he called this process of softening up his clothes 'crunching'.

Nobody made a greater mistake than he who did nothing because he could do only a little- Edmund Burke

[ Parent ]
Good info!
I was thinking of trying an experiment with line-dried towels, also.  If after they are dry you spritzed them and put them in a black garbage bag in the sun with some dryer balls, you might be able to soften them by agitating them in the garbage bag.  It would be sort of like a solar fluffer.  Trapping the heat in the garbage bag like you would a solar shower could also activate fabric softener sheets... in theory.

Millions for defense, but not one cent for tribute!

[ Parent ]
Could that polar fleece/blanketing be used as toweling?
Can that fleece blanketing that you can get at discount stores be used as toweling?  What about that micro fiber stuff?

I have a microfiber duster and I catch my younger two playing with it all the time.  When I ask them why on earth they want to play with a duster, they say it is because it is so soft and funny feeling.

Never doubt that a small group of thoughtful, committed citizens can change the world, indeed it is the only thing that ever has. -- Margaret Mead

[ Parent ]
kids just LOVE that texture
and they stay pretty soft no matter how you wash them, too!

All 'safety concerns' are hypothetical.  If not, they'd be called side effects...

[ Parent ]
I just found a waffle weave microfiber towel for sale on ebay.  That sounds like something worth trying out to me.  I don't think the polar fleece will work...erm... mainly based on experience.  LOL

One time when I let my laundry get backed up I didn't have a single towel in the bathroom.  I had a load in the dryer, but forgot to bring one with me.  I was planning to wear a pair of polar fleece ski pants, which I did bring with me.  After my shower, there I was dripping in the shower when it dawned on me.  I had no choice.  Polar fleece just isn't very absorbant.  Guess that's what makes it especially good for ski pants.  ;)

Millions for defense, but not one cent for tribute!

[ Parent ]
On the other hand, having some wardrobe choices that are made of polar fleece
would be a very good idea.  Blankets too!  It keeps you toasty warm, and it does hang dry nicely.

Millions for defense, but not one cent for tribute!

[ Parent ]
This is is a great fabric . . .

I bought a set of towels that are 80% bamboo, 20% cotton.
They feel like they have had fabric softener put on 'em even when I forget to put a sheet of it in the dryer.

Bamboo also dries quicker than other materials - I got this set to try when I heard that.  We have some really thick Egyptian cotton towels that take forever to dry after using them to dry off with . . . but I can take a shower, use one of those bamboo blend towels, and a few hours hanging on the shower curtain rod is enough for the towel to be completely dry and ready to use again - it's just as soft as if it had just come from a dryer with fabric softener, too, after each use and dry out cycle.

You can get other things made with bamboo or a bamboo/cotton blend - the more bamboo, the better, from what I've seen.  I have a robe that's the same material as that set of towels, and I love it.  DH doesn't read here, or I wouldn't be able to say that he's getting a matching robe for Christmas . . .

I'm really sensitive to the way things feel, and so is my daughter - we're both somewhere on the autistic spectrum, although not professionally diagnosed.  When I was the kid that just didn't fit in anywhere, nobody had ever heard of autism.  Best I can tell, we're both very verbal Aspies.

Be sure to watch the bamboo content, tho - things with a low 20% or so bamboo content don't do nearly as well as things that are 60-80% (or more) bamboo.

[ Parent ]
not just clothing
I am also dealing with this issue.  Routine, structure are very important.  Any change at all, is usually difficult to deal with. I will try to maintain a schedule as best I can.
Textures of foods can be another. For example, my son can't eat yogurt with pieces of fruit in it. I made sure to try some prep foods (rice with beans) to make sure he could handle it.
Strong smells are also another thing. I am stocking plenty of baking soda, kitty litter box odor controls, anything that can be used to cover smells.
I have been stocking books that he can read.  We have always played board games, so I have plenty of those. I have a knitting book, so I am going to try to teach him that, as a "hobby".

Yes, change is a biggie.
Bringing unfamiliar equipment into the home that disrupts the way things are usually done could be a problem.  For intance, if you decide to use a kerosene heater with a window cracked for safety, you would need to be vigilant about that window.  The cracked window might get closed when you aren't looking.

Noise could be a problem for families who plan to use a generator.  Each child is different.  For some, smells can be a problem.  For others it can be light, noise, etc.

She's not mine, but there is a 15 year-old girl in my life with PDD-NOS.  All the doors to the bedrooms/bathroom are kept closed all the time.  Open doors, loud noises, and lights all bother her.  It's pretty disconcerting when you are standing in a room doing some task and the light is switched out on you.  LOL  She doesn't do that so much anymore, but as soon as you leave the room she does.  She's great for the electric bill, though.  We would have a problem if she was turning off lights like oil/Aladdin lamps or lanterns.  Families for whom light could be a problem might want to think about storing extra extra matches.

Millions for defense, but not one cent for tribute!

[ Parent ]
Natural day/night cycles
I know a family who resolved some of this issue by reverting to the natural cycle of d = daylight and night = when it gets dark.

It was a very difficult transition for them at first but as they are a homeschooling family that operates their own business - which is how we hooked up - they have been able to make it work most of the time.

They only have the one child so everything pretty much revolves around her.  Activity time is when the sun is up.  As soon as dusk is passed and the sun is down they go to bed.  They use very little artificial lighting which is what really sets their daughter off.

When mom or dad needs to stay up for some reason, they have a room totally set aside for this.  Its insulated and blacked out from the rest of the house.

While I understand some of the need to cater to such specialized needs, part of me wonders if it is a totally healthy response all the time.  What happens if the child is suddenly left on their own with no coping mechanisms since their needs were always catered to.

And that probably speaks to my lack of experience and ignorance on the subject and doesn't have anything to do with being "heartless."  I'm just reporting what I've heard.  But I do wonder about it.

Never doubt that a small group of thoughtful, committed citizens can change the world, indeed it is the only thing that ever has. -- Margaret Mead

[ Parent ]
Yeah, it is kind of an important thing for them to understand
that others have needs also, and to learn to respect it.  I can understand that it is probably more difficult when children are very young. That was why it was great progress when Tam stopped turning lights off while people were actually in a room!  I mean, you could be peeling potatoes and plink-- darkness.  She has to learn how to get along in the world.  Just recently she made another step forward by accepting that her mother's bedroom was off limits.  The door remains closed when Tam is home, but she has stopped opening the door to turn off the light in there.  That is her mother's private space, and if she wants the light on the light stays on.  In a family, everyone's needs have to be balanced, which will be extremely important during SIP.

Also, at my house we do not keep doors closed unless we are in a room and need privacy.  She doesn't close doors here.  She doesn't turn off lights at my house either, but I layed the groundrules early on.  It hasn't stopped her from coming over, so I guess she has adjusted somewhat.  She stayed with me when her mother had surgery last year and we got on just fine.  There's just something about being home, I guess, and needing to relax and kind of let down.

Millions for defense, but not one cent for tribute!

[ Parent ]
bump n/t

All 'safety concerns' are hypothetical.  If not, they'd be called side effects...

Didn't see this was such an old thread . . .
Or I'd have added my comment here at the bottom - but please do see above what I posted above about fabrics using bamboo.

It's really wonderful stuff.  Sorry to post twice about it, but it's almost like a miracle fabric - quick to dry and soft.  It can be warm, too (my robe).

[ Parent ]
there's some additional update
that I will post as soon as I can clarify the details.  The Exceptional Parent Magazine wants to do a feature article to help encourage parents with special needs children to prep.  So stay tuned.  ;-)

All 'safety concerns' are hypothetical.  If not, they'd be called side effects...

[ Parent ]
Exceptional Parent Article out!

Emergency Preparedness Series - Part 2: When Disaster Strikes
By Nancy Henderson
Feb 1, 2009 - 8:25:04 AM

In late 2001, even before government and health officials started advising the public on what to do after terrorists distributed anthrax spores through the U.S. mail, Karen Kirk began taking steps to protect her family. She and her next-door neighbor drove to the store and bought duct tape and plastic to cover their windows and doors. Her hunch was right; within 36 hours, media outlets were broadcasting the same advice and supplies quickly sold out.

Five years later, when Kirk, a former pre-school teacher in Pennsylvania, learned that avian influenza was spreading in Asia, her "sixth sense" kicked in again. She surfed the Internet for details and stockpiled water and food. She attended a regional meeting where state officials discussed the threat. And she called her county's emergency services director, who invited her to his office to talk more about the subject. Armed with several notebooks full of information she'd collected, she peppered him with questions: What are you doing to prepare for a pandemic? (A pandemic is a global outbreak of a disease for which there is little or no immunity, and no vaccine.) Will our tap water be safe to drink? How will you alert members of our community?

"A pandemic is going to [last much longer] than your worst-case snowstorm," says Kirk, whose posts on several international flu forums attracted the attention of Dr. Susan Chu, a physician in England. Together they formed ReadyMoms Alliance, a grassroots volunteer initiative made up of concerned parents. Kirk now gives public presentations, facilitates online discussions and offers a downloadable "toolkit" of posters, tabletop signs and handouts for displays at health fairs and other events. "I believe, from my experience, that the key to getting folks prepared is to give them forthright information. Once you're prepared for a pandemic, you're prepared for any event that's going to come along.

"Whether you live in an area that has hurricanes, tornadoes, flooding, or bad winter weather, you will be ready for all those different scenarios," Kirk adds. "In fact, you would be ready if there was a terrorist attack that meant you needed to stay close to home for a while. And if you need to evacuate your household, you would have things to take with you."

Are you ready? ... continued at link above ...

shortened in case of copyright considerations -k

www.EmergencyHomePreparation.org -- A 'card-catalog' style of prepping information.   -


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