You’re No Burden, I Assure

You’re No Burden, I Assure

One day running errands with Chloe in her wheelchair and carrying my baby Sam, a very nice lady stopped me to chat about Chloe. She ended by saying, “thank you for carrying such heavy burdens and still being such a happy person.” I know she meant that with all the compassion and empathy in the world and I certainly wasn’t offended, but for Chloe’s sake I wanted to just shout from the rooftops that she is not a burden! These lyrics came to mind: You may need me to carry all your weight, but you’re no burden, I assure. You tide me over with a warmth I’ll not forget and I can only give you love....
Toy Like Me

Toy Like Me

Have you heard of Toy Like Me? It’s a campaign for ran by parents of children with disabilities promoting change in the toy industry to better represent disabilities. And the toy industry better watch out because if there is a group of people who are patient, persistent, and willing to never stop fighting for what they want, it’s special needs parents! And what a great idea! According to an article on Upworthy, three parents came together and decided their children (one in a wheelchair, one who is deaf and visually impaired, and one who is blind) decided their children needed their assistive accessories to be represented in the toy world to make them feel comfortable and promote positive self image. They made a prototype doll with a cochlear implant, which they shared on social media. The image was shared enough that one week later, a toy company contacted them to take their idea and run with it! There are dolls and a current push for Lego to catch on to the idea. Read the full Upworthy article here. Both of my children, Chloe with special needs and Sam who has no special needs but has a sister with special needs and is exposed to special needs often, love to see pictures of children in wheelchairs in books or toys with special needs equipment (we have a teddy bear with a wheelchair), or when there are children with special needs on one of their favorite shows (Sesame Street does a pretty good job of featuring children with special needs in their episodes). Whenever there is something that reflects those unique aspects...
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....
Cerebral Palsy Is So Limited

Cerebral Palsy Is So Limited

A few years ago, I had been feeling overwhelmed and victimized by Chloe’s special needs. I was feeling a little bit like Chloe’s diagnosis had stolen the life I had planned and completely taken over everything. I felt like everything I had ever wanted had been indefinitely delayed because of Chloe’s developmental delays and I did not like feeling as though I had no control in my own life. Well, I learned long ago that when I start to feel like a victim, I have to dig deep and find a way to become the victor instead. In this case, I was stumped…. I felt defeated. But I didn’t stop trying. I kept seeking a way to overcome these feelings. My answer finally came when I was looking for something to uplift a friend who is battling cancer. I found this print: What Cancer Cannot Do. Its message spoke to me. Please don’t misunderstand. I’m not trying to compare Cerebral Palsy to cancer. Cancer is undoubtedly a much different battle. But I believe the underlying message of that inspirational print works with many diagnoses. When I read it, the victim within me was quickly diminished by a new sense of empowerment. Yes, Cerebral Palsy has changed things, but it has not won and it will not win. It has given Chloe disabilities that have affected our lives, but it has not and will not disable our ability to live a happy and fulfilling life. It has not and cannot take away anything that really matters! In honor of this new-found sense of empowerment, I created this word art. The words are very similar to...
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...