What I Can Do

What I Can Do

“What I can do is offer myself, wholehearted and present, to walk with the people I love through the fear and the mess. That’s all any of us can do. That’s what we’re here for.” ~ Shauna...
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....
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...
When someone asks to help…

When someone asks to help…

No bones about it, life for a special needs family is hard. The divorce rate for parents of special needs children is sky high. Every part of your family is affected. Everything you do changes, down to even what you drive. To most, there are weekly appointments and, to some, the hospital is a second home. Your world is turned upside down. While much of this is almost a foreign language to others, many still want to do something to help. I know it’s not always easy to accept help, but allowing someone else to ‘serve’ you is a giving thing to do! Think of how you feel when you help other people? Am I right or am I right? We need it, they need it, and it really can really help to lighten your burden. So they ask, now what can we have them do? Here are a few easy ideas to consider. VacuumYes, seriously. This is a chore that is only a little embarrassing to have people help with right? I mean, it’s not like cleaning the toilets (which they would do, I swear!) or folding your undies. Easy, fast. Dishes is another quick and easy one! Make a list of easy, over-due household chores. Watch the other kids for an hourSometime you just need a breather. Why don’t you and the spouse go for a little walk, hand in hand? Remember those days? Take a bath, run an errand, get a pedicure. Shower? Sit alone in a quiet dark room? Just imagine what you can do with a free hour! Bring dinnerThe best meals are meals...