Know Before You Go

Know Before You Go

I recently came across an article in Costco Connection. The name of the article (found here) was Making ‘Travel Accessible For Everyone’ with a picture of a person in a wheelchair. Since I’ve recently caught the travel bug, but worry about travelling with Chloe, this really grabbed my attention. The article talks about John Williams of wheelchairdestinations.com, his mission, and how he goes about it. I was thrilled to read that he previews tourist locations with the perspective and needs of wheelchair users in mind, then shares his findings on his website and with “Know Before You Go” videos. How cool is that! He focuses in the pacific northwest. We do have a couple trips planned in that area so I was thrilled! And it got me thinking we need more of this information for everywhere we want to go! In addition to Shannon’s awesome special needs travel tips shared here, I realized how nice it would be to truly know before we go anywhere exactly what to expect in regard to wheelchair accessibility and other features at destinations that will be good to know. For example, I didn’t find out that Disneyland has a special area just off Main Street where you can take your child to nap or change their diaper. They also sell quite a few supplies. I didn’t find out about this until the last day of our third trip there with Chloe. Boy do I wish I would have known about it sooner! There were many times a trip there to decompress and help her climb out of sensory overload would have saved the...
Special Needs Babywearing

Special Needs Babywearing

This is something that’s relatively new to me! Bear with me, we are all going to learn a little something new here! Last summer we decided that we wanted to start doing all kinds of fun things with our kids. They are a little older, almost all of them walk where you want them to (where you want them to is the kicker) and it’s time to start making memories! There is a place in one of the canyons not very far from me called the Fairy Forrest. People paint rocks and bring them to this little area in the woods a bit off the beaten path where they create a kid of fairy community. Fun! Then I recalled what I read, something about a dried creek bed? Not so dry some parts of the season? Might require some rock jumping or wading? Errr… wheelchair friendly? Not so much. Or what about a cave adventure! There is a cave a couple hours away that we went to with some of our friends back when we were dating. Shoot, that was AGES ago! How fun to take the boys into a cave where they can kind of skip along a marked path, looking at amazing things and learning a little on the way. Yay! But stairs… like a hundred stairs down into the dark earth. Oh my… no stroller in this area. Will my boys ever do any fun adventures again? I started to look into baby wearing, specifically for large children. I was not looking for a mega back pack from some outdoor retailer. (Besides, the weight limit on...
Do You Have a Runner?

Do You Have a Runner?

A lot of children with Autism and Down Syndrome (among other diagnosis) love to run, run away, far… fast… and they don’t have the ability to process consequences or danger. They are focused on the instant gratification in spite of negative consequences. Unfortunately, what this means is that a lot of parents avoid taking their children to crowded places like the circus and zoo, for fear they might bolt. Eloping they call it… there is an actual term because it is an actual, pretty serious challenge for special needs parents! I shared a recent story about a friend of mine, it was a scary situation! What can you do ahead of time if this is a problem you face frequently? Temporary Tattoos – There are a few options for temporary tattoos. Some have you write the number in a location on the tattoo with a marker once it’s been placed but others are fully customizable. I found several vendors, even Etsy, by searching “Temporary tattoos with phone number”. They are very reasonably priced, we are talking as low as 45 for $20,with the phone numebrs! This is a great option for crowded places. Teach older children to show the tattoo to others, no words required. Harnesses and Leashes – There are a number of somewhat fun and stylish kid backpacks on the market that function as harnesses. Not only will many children like the style of the pack, but they also provide some weight and sensory input. You can also put some of the tiny things to keep tiny hands busy inside! Check online for “Toddler safety harnesses and...
One Big Fat Mistake

One Big Fat Mistake

You know those times where you look back on a situation and think, ‘wow…. I went about that all wrong!’? Fairly recently I had one of these and it forced me to look back on life with my special needs daughter and realize that I really messed up. Not one big huge mistake but rather a series of events that, added together, made a big old mess. Obviously I don’t think I am alone in these mistakes so allow me to share my story in the hopes that you don’t have to do all the back-pedaling I am doing. After six years of being a special needs family my husband and I decided to go on a ‘second honeymoon’ trip out of the country. The challenge? We had five young children that we needed to find care for and one of them has special needs! We had aligned a close sister to take care of my special needs daughter, farmed out the other children and we thought we were all settled but then the whispers started. “They need to hire a nurse!” “How can she possibly care for Dylan’s needs!?” “Don’t they have to do medical procedures?” It was awkward. Yes, we do have to do a few things with Dylan that parents of typical children don’t have to do but we have been doing it for years, it’s second nature now and it’s easy! Her cares only take a few minutes three or four times a day. To hire a nurse to come over four times a day (at minimum, full time was implied) seemed a bit of...
Sometimes Things Are Harder

Sometimes Things Are Harder

It’s just hard, this thing called normal. And we want to share what we are up against, not so you can feel sorry for us, just so you can understand. One of the things that I personally have a hard time with is when family and friends fail to realize that it’s harder for families with children and family members with special needs to do some of the “normal” things that people do on a day to day basis. Oh yes, don’t get me wrong, we will try, our other kids count on it, but it’s just not going to be common when our choices are to get a sitter and leave someone behind or consider so many extra things. First and foremost – and likely the easiest to deal with – we have gear people! Our children have GEAR. Oxygen tanks, trach supplies, feeding pumps, special food, medicine, emergency kits. Where they go, their gear goes! But, with that handy pack mule (often known as ‘daddy’) we can move on, because this is where is gets a little more unpredictable and complicated for us. Some of our children can’t walk on their own and can’t sit in a stroller for a significant amount of time. Often we are asked to go somewhere where Dylan can “just stay in her stroller.” For some kids this works, you would think being up with the crowd is optimal right? It used to work for us, but we have turned a corner. Dylan is developmentally around 18 months and as with every 18 month old, she is fine while we are moving her stroller, but...
Summer Travels with a Special Needs Child

Summer Travels with a Special Needs Child

Finally (already?) summer is here, let the games begin! We can go on road trips! We can go on hikes! We can go on airplanes! But wait… as if planning and packing for your family wasn’t overwhelming enough, the special needs parent has a bit more to consider when planning a trip than the parents of typical children. Sometimes it’s hard to wrap your head around all of the things that you will have to do, but… you deserve a vacation too! You’ve decided to go. You have been thinking about it for months, scouring the TSA website and your airline’s website for information about traveling with a disability and getting medication easily through security. You know to carry your emergency kit and medical information with you (including a letter with your child’s diagnosis) but what are the little things you might not have thought of? We have compiled a helpful list of practical travel tips to help you on your way. [title size=”2″]Practical tips for traveling with a special needs child[/title] Mail diapers and tubie food ahead. These are the heaviest and bulkiest things you plan to bring, but consider sending them to your hotel ahead of time. Hotels will hold on to any packages they receive for you if it’s within a certain time period of your stay. This means you can send a package ahead, make sure it’s arrived and then step on the plane! Use 3M command hooks. When staying away from home, you can use a 3M command hooks to hang your child’s food bag instead of an IV pole. The hooks can go anywhere and...