We're camping with multiple disabilities...

Discussion in 'Camping for the Medically/Physically Challenged' started by SuperHalls, May 8, 2010.

  1. SuperHalls

    SuperHalls Camping Adventures of the SuperHalls!

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    So, we have two children. Q, 6, is high-functioning autistic, and suffers from migraines, and also has epilepsy and asthma. (Yeah, it's a handful...) A, almost 5, has a hearing loss, and we suspect is OCD.

    We took a two-week trip last summer, but that was prior to learning that Q has epilepsy.

    I'm a little anxious! I know we'll be fine, but I can't help but worry for their safety, and my sanity.

    Any tips?
     
  2. Island Ranger

    Island Ranger New Member

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    I admire your spirit & wanting to do what everyone else does, it is hard being a parent at the best of times let alone dealing with things that happen in your life & nothing can prepare you for this when it happens to you.

    We have a disabled daughter who is in her late twenties & we have had our moments, but life goes on & you muddle through somehow. We did our best & thats all you can do. You will always worry, we have 9 GC & still worry
     
  3. Yellowkayak

    Yellowkayak Popups.....when sleeping on the ground gets to you

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    First let me say I admire you for raising your kids with so many......noticed I did not say problems, disabilities, etc... because they are NOT, they are challenges and thats all. If you treat them as problems then they become problems and life is harder to deal with and puts more stress on you and the kids. So look at them as challenges and look forward to them. Its your life, its their life, make lemonaid out of lemons I always say. Go out there and have fun with your kids, and enjoy every moment you have with them....trust me they grow up FAST, and they will cherish every memory you creat together. Life is NOT a race to the end, its an adventure along the path of life until you get to your end, and from there who knows. Take one day at a time, don't care about what other people think about you and the kids, embrace the challenges you have and love every moment of them, and most importantly, love your kids like no tomorrow.

    Helpful hints to aid you on your life's adventure with your kids while camping. I am a nature guide, a master naturalist, and let me tell you there is one thing kids love, and thats the great outdoors...even the creepy crawlies, the birds, the fish, hiking, swimming, camp fires....they eat it up. Do yourself and your kids a big favor...learn as much about the oudoors TOGETHER. Buy books on insects, birds, fish, etc...and you will see that those challenges aren't so bad, because the smiles and memories you will create will make your life FUN not stressful.

    Take care

    JJ
     
  4. jim1999

    jim1999 New Member

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    The one tip I have is one that I suggest for everyone.

    Write down for everyone in your group:

    Name, date of birth, any long term health issues, all current medications and doses both script and OTC, names, addresses and phone numbers of their doctor(s) and emergency contact information.

    Make several copies. You and your spouse should have a copy in your wallet and purse, keep a copy in your vehicle and another in the camper. Update as needed.
     
  5. barb_dave

    barb_dave Active Member

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    Jim, That's really a good idea and something that is often overlooked. Thanks for bringing that to everyones attention.
     
  6. redfragglerocker

    redfragglerocker Jen & Mike, Andrew (8) and Justin (5)

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    It is also a good idea to keep a recent picture of your children, not a digital copy on the camera, but a picture that you can show people if (God forbid) they were to be missing.

    This happened to a friend of ours and it took more than an hour to print pictures to distribute around camp. Luckily the kids had wandered down the wrong trail and were picked up by a Park Ranger a few hours later.
     
  7. redfragglerocker

    redfragglerocker Jen & Mike, Andrew (8) and Justin (5)

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    Camping can be a challenge for any child, especially young ones. I admire you for taking them on the trip, the only advice I can offer is to be flexible, have a back-up plan in case the camping becomes too much of a challenge for your family. I recommend setting up a schedule and communicating it to your children the day before and in the morning, this might help to alleviate anxiety and to create a decent routine for your kids. You know your children better than anyone, treat the camping trip as an extension of your home routine and let them dictate some of what you do.

    How long is the trip you are planning? Are you going somewhere with activities for the children or are you on your own? Having preplanned and on-site activities may help you preserve your sanity.

    There are a lot of suggestions for activities for young children on this site. Our kids are 4 and 7, and we have found a lot of great ideas by looking through the pop-up portal.

    Good luck, let us know how it goes.
     
  8. barbjmj

    barbjmj Member

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    If you haven't already, you might consider looking for a parental support group in your area. I have several friends who have children (with varying degrees) with autism. They find sharing experiences with like-constructed families, invaluable. As for camping...have you tried "driveway camping" to identify those activities that are calming and satisfying for the children (and adults) and also those activities that as one of my friend's say, "sets them off"?

    Good luck and you should be very proud for wanting to give your children an outdoor experience...whatever their challenges may be.
     
  9. SuperHalls

    SuperHalls Camping Adventures of the SuperHalls!

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    Fortunately, our first trip out this year is going to be three days, about 35 minutes from home. We're going with the 'dress rehersal' theory.

    I'm not the least bit worried about Q's autism, or even his asthma. Those, we've dealt with for years, we've got our own rhythm for dealing with those needs. To be quite frank, I'm petrified something will happen with his epilepsy. My uncle was swimming, had a grand mal, and drowned when he was 9. Q's seizures, as yet, are petit mal, but we're petrified of that changing.

    For those of you who've been camping with disabilities, do you make notes of where the local hospitals are, etc.?

    We've got the ID cards, and bracelets, but I do appreciate the idea of carrying a current photo. I haven't thought of that, and I will most certainly do so. I've got to get a current med list for all of us put together too. I'm thinking I'll store a copy in our onboard first aid kit, too...

    I'm trying really hard to let him be a child, and enjoy the things every child should have a chance to enjoy. The epilepsy diagnosis hit us out of left field, and it's taking me some adjusting. It's *so* hard to let go a little. :(

    Thanks everyone, for the input!!
     
  10. slowfatknitter

    slowfatknitter Member

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    I'm an RN and DH has multiple medical issues(Hypertension, COPD, Seizure Disorder, Diabetes etc). We have a "special" tote that has all of our medication and equipment we need in case of emergency. I bring along a BP cuff (batteries), his 12v nebulizer and glucometer. Our cell phone has GPS so we can tell a dispatcher exactly where we are if we have a problem. Make sure you note what your site number is and the name of the campground. Keep a current list of meds and physicians phone numbers. Don't forget extra batteries! Know where the nearest hospital is and the fastest route. We've never needed to use emergency services but having a plan gives us peace of mind.
     
  11. silvermickey2002

    silvermickey2002 Morris County, NJ

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    By all means when you get to the CG ask where the hospital is!! We do that when we camp with the Boy Scouts. We print a map of how to get there from the CG and how far it is. We also have our GPS coordinates with us in the event we need an EMT. Not everyone has a phone with a GPS chip in it.

    Cell phones with or without GPS chips make make 911 calls easier. When you make a call into 911 remember you will not be connected to the local 911 dispatch center. You will be connected to a company that handles cellular 911 calls and will ask you what town you are in, once you tell them they will connect you to the local 911 dispatch center. That local center will get your ALI (Automatic Location Identification) , basically they will get your position or very close to it if you cannot provide exactly where you are. The best way to give your position is to have a phone with a GPS chip in it. This way they can identify your GPS coordinates. But remember you must be outside for the GPS to work. It needs clear access to the sky, it will not work indoors. If you are indoors they will use triangulation to determine where you are.

    Hope this helps!!
     
  12. eve104

    eve104 Ol'Bessie

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    I have a DS age 12 whim has Down syndrome, and a DD age 14 with ADHD whom cant take ADHD meds as she also has multiple congenital heart defects. Plus a DD age 5 whom thank God is normal functioning, but has a lot of energy and get bored real easy. As a mom you know what you need to do when ever you take them anywhere, for me its keeping a close eye on my youngest and my son. My older one knows better and always stays close. When we set up camp I keep them (with doors open) in the TV till we are set up, or I have them right there with me helping with simple things. Maybe you can practice set up in camp driveway with them to see how much they will participate. also have activities planned for down times like coloring or anything simple you know they will like. Make sure you have a special bag with all meds and a list, as well as child information and location of nearest hospital. You can always call ahead to the CG for this info and make a care package. But most important of all... HAVE FUN!!!!
     

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