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...
Ta Da!

Ta Da!

I don’t know a person who isn’t busy. Everyone’s got a to do list a mile long. I’ve attended several workshops on living a life that makes you happy and almost always one of the main points they make is the importance of setting long-term, short-term, and daily goals. I used to use a to do system that looked something like this: So obviously I never actually wrote a to do list like that, but I just had a mental list that was a lot like that and it is pretty comical to think that would ever work. I always knew I had a lot to do, but all that stuff was just jumbled all together and I always felt overwhelmed. So since that wasn’t working and after attending a workshop that reminded and motivated me to live a more purposeful and meaningful life, I got an app that helped me keep track of tasks and goals. That definitely made me more efficient, but after awhile, I started to recognize a trend. Almost every day, things came up and made it so I couldn’t complete everything I had planned. And the majority of the time, the things that came up had to do with being a caregiver to a child with seizures, muscle pain, therapies, IEP’s, sensory issues, medical procedures, medical appointments, etc., etc., etc. If you’re reading this, I’m sure you understand. One day I was feeling discouraged about all I wasn’t doing and my compassionate and wise friend reminded me all that I had accomplished. I realized she was right! I had been focusing on what I wasn’t...
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...
Deciding to Have More Children After Your Special Needs Child

Deciding to Have More Children After Your Special Needs Child

Deciding to have more children is something that weighs very hard on the parents of children with special needs. Can you ever have enough time, will you be able to work with them, can they reach their full potential when you are spread thin? Is it fair to even consider it? Overwhelmingly the answer for people who have continued on to have more children was that they were glad that they had more children. For many reasons. Here are a few: No matter what life brings, your special needs child will never be alone. Not only are we reassured of this as parents but the child knows that everything they do, they will have a sibling beside them to help and encourage them. My children are still young, but I have seen so many examples of protective caring siblings that I can’t wait to see how their relationships will develop. Having a special needs sibling is good for typical children. Many families talk about how their other children are far more patient, quiet and caring for others because of their experience with their special needs sibling. They are often quicker at developing that ability to think outside of their own needs. The extra stimulation is good for children with special needs. Our house is crazy, it’s noisy, there are toys everywhere, kids everywhere. Dylan is always trying to ‘catch’ the other kids, she wants to be where they are and will try as hard as she can to get there. That is motivation that a therapist cannot provide on their own! Logistics work themselves out – One mother asked...
3 Reasons I Don’t Mind When Young Children Point and Stare at My Child With Special Needs

3 Reasons I Don’t Mind When Young Children Point and Stare at My Child With Special Needs

I might be making several generations of special needs parents angry by saying this, but it’s true. I don’t mind when young children point and stare at my child with special needs. In fact, I like it! I’m such a rebel, I know. ‘Don’t point’ and ‘don’t stare’ are pretty basic social recommendations for people of all ages. But let me explain my deviant way of thinking by sharing two examples from the happiest place on earth…you guessed it. Disneyland! Example one. I was waiting with Chloe for the rest of our party to get off a ride that Chloe wasn’t able to go on. We were sitting on a bench and a very cute family was sitting next to us. The mom was passing out snacks and planning their next stop when one of her sons, probably 4 or 5 years old, kept looking at Chloe and/or her wheelchair. His mom noticed and told him it was not nice to stare. Then slowly but surely, he wiggled his way closer and, pointing at Chloe’s pink wheelchair, asked me, “Why is she sitting in that?” I smiled a big grin, excited to talk about how we all have differences and planned to encourage him to chat with Chloe because, well, she loves making friends! Before I got a single word out, his mom went in to panic mode. I’m sure she was thinking, ‘Oh no. He was staring, now he’s pointing and asking questions. He is breaking social protocol. What an embarrassment!’ She grabbed him and angrily told him how it is not nice to point, stare, and annoy strangers....
Talking to My Special Needs Child About Her Special Needs

Talking to My Special Needs Child About Her Special Needs

A few years ago, I got thinking about how Chloe is unable to move or communicate like she’d like to and all the frustration and behavioral issues that go along with that. I got thinking it might be nice for her to know why she’s unable to do those things. I realized that when other severe challenges come up in life, i.e. abuse, death, etc, the recommendation is for a person to go to counseling and talk about it. Shouldn’t that same principle apply with Chloe? So I sat her down and told her “the story.” I had told her pieces of the story before then and I always explained what was going on in the moment, but I had never sat down and explained everything. This time, she got the full scoop. I told her how sorry I was that this happened to her, but how grateful I am that she is so strong and brave through it all, that I am grateful to be her mom, and that she is an inspiration to me and many others. It was a very tender time. I didn’t just tell the story, I told parts, then asked her to talk to me about it. Even though she is “non-verbal,” she is very expressive and communicates in her own special way. And talk she did, in her own little Chloe babble language. Although I don’t know exactly what she said, I’m sure she was just getting out some feelings, and I’m sure that felt good for her. After all, we all need to vent now and then, right? Even with non-verbal...