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...
A World Without Loss- Suicide Prevention

A World Without Loss- Suicide Prevention

“Oh sad…” I observed out loud to my mother the other day as I was looking through FaceBook on my phone. I continued “… someone died.” My mom seemed shocked, “who!?” “A baby, it happens all the time, babies die, and it’s sad.” I said. She said “It doesn’t happen all the time in my world! I wish you lived in a world like mine where babies don’t die all the time.” That’s just it. It is my world. Special needs kids die all the time… not only in my local support groups but the world is small, we are close together now. Because of my associations, those I have made through Dylan, I hear about children dying all over the United States, or beyond. Often. Far too often actually. And it’s been a bad winter. It’s hard, and it’s sad and it’s stressful. But nothing broke my heart more than hearing of a special needs mom who chose to take her own life last week. She left behind five children, three of whom have some kind of special needs. Can you imagine the heavy load she must have been bearing to leave her family? The despair? Oh, it’s horrible, and I tear up thinking about it again… and again. I can’t stop thinking about it actually. Not only do babies die in my world but moms do too? I can’t handle it. I get it, sometimes the stress is unbearable the divorce rate for special needs parents is through the roof. But we don’t have to do it alone, we have each other. I am glad I have...
All About Perspective

All About Perspective

That’s it, I have lost it, I mean really lost it. I am wishing a positive diagnosis on my kiddo! Give me a chance to explain though… because I don’t think I am the only one! Children with abnormal brains and others taking medication may not react the way typical people do to infection. A lot of times moms (and yea, dads too  sometimes!) know that’s something’s wrong. Whether it be the child is not eating well, sleeping a lot, lethargic, sad… or just a hunch deep in our gut. We know, we just know. Finding out exactly what is wrong is the tricky part! So we visit the doctor’s office. never a fun place when you are so used to sheltering your children from illnesses! But here we are. I always cross my fingers, and toes and eyeballs… as the pediatrician (or my cousin who is a Nurse Practitioner and very kind…) peeks into those ears. And then they tease! They are  always so silent after peeking in one side as they gently move to the other. And I just sit and hope… (crossing more body parts!) Is it an ear infection? Please… oh please let it be an ear infection! What? Did I just say that? Well yea, I totally did. This is me wishing an ear infection on my child. Hear me out… I wish for an ear infection because, when Dylan gets sick, she REALLY gets sick, and when we have a positive on an ear infection we have an easy answer that we can quickly treat and be done with! Hello friendly antibiotics! If the...