Posts Tagged ‘special needs parent’
This Time Was Different, But Not Really
I have a terrible memory, but I remember that day like it was yesterday. I was a 23-year-old single mom. I was recently divorced, working 3 jobs, and had absolutely no idea what I was doing. With one look, anyone would have seen that I was ready to break at any moment. The doctor could see it too, I could tell. I could tell by the way she tip-toed around the subject, like she just knew I needed a bit of hand holding. I could tell by the way she…
Read MoreThere is no Perfect Life
Nobody’s life is perfect. I think it’s important to say that. In fact, most people’s lives are not easy. But yet social media sets this precedent that every moment must be magical and perfect. And a competition. Holidays. Family photos. Sunday mornings. I see it a lot specifically in the world of special needs parenting. Whose autism is harder? Because I’m happy most of the time, obviously our autism is easy. That’s one game I absolutely refuse to play. I will not compete or compare or rank out autism against…
Read MoreOn Our 10th World Autism Day, We Celebrate
Today is World Autism Day. This is our 10th one. As my son has gotten older, the meaning of the day has morphed for me. It used to be about education. Today, it’s about celebrating. Celebrating differences, celebrating progress, and celebrating a boy who has climbed far more mountains than I have. And ice cream and dancing. I have three boys. Three crazy, wild, busy, smart boys. Each of them is exactly who they are supposed to be. My oldest is autistic. There are a lot more words used to…
Read MoreMy Son is More Than His Diagnosis
On this day 6 years ago, our son Shawn Corey received his official diagnosis of mild to moderate Autism. I can’t even begin to describe or express how we have all grown since then. I can’t even find the right words to express how proud my son has made me. I’d say the biggest lesson I’ve learned is that Shawn is so much more than his diagnosis. All people with special needs are much more than their diagnosis. He’s accomplished so much in the last 6 years I can’t even…
Read MoreDo You See Us?
Do you see us? We are the parents who have always parented in an altered universe, and now we are being asked to live in yet another altered universe with no end in sight. Do you see us? We are the parents whose children highly depend on structure and routine to feel secure and safe and less anxious. We are the ones who need a multitude of people to support our child’s ability to learn, to play, to speak, to toilet, to eat, to walk, and to participate in the…
Read MoreStep Into My World, My Son’s World
Shia is our beautiful autistic, primarily non verbal, 10 year old son, who also has sensory processing disorder. I have watched him in his world over the years. I have felt his world deeply and I have seen the impact his world has on his Daddy. Enjoy a peek into his world as you read below… Come into my world and I will help you let go of the things that cause you to lose your peace…just ask my Daddy. Your world is too chaotic for me. Too much noise.…
Read MoreLove Comes in Many Forms
What is love, “a profoundly tender, passionate affection for another person.” Love comes in many forms. As a child, we think of the soft, tender love that sits amongst family. As an adolescent, we think of our rich friendships that are filled with late-night talks. As adults, we think of our romantic relationships that form foundations of growth, beauty, and struggle. The choice to love not found in common ties of biology is where I often land when thinking about love. I found pieces of myself in each person who…
Read MoreThe Extraordinary Goodness All Around Us
Hi. My name is Carrie. I have five kids, and my second son has autism. His name is Jack. Jack is sixteen years old now. Theoretically, he is a junior in high school. Theoretically, he can drive a car. Theoretically, he should be studying for the SAT’s and maybe looking at colleges and trying to decide what the next chapter of his life may hold. There is nothing theoretical about autism though. That’s the thing. Autism is a concrete set of symptoms that, like a set of parentheses around a…
Read MoreWhat I Need You To Know During Feeding Tube Awareness Week
I entered the world of special needs when my son was three months old. He is a twin and his brother also has special needs, they were premature. Lucas developed an airway disorder called Laryngomalacia when he was a few weeks old. When this happens, you can hear your baby breathing from across the room. They also can turn blue and stop breathing. They may also require oxygen and other life saving measures. It can be terrifying. We figured out at 3 months from tests, that he was aspirating his…
Read MoreAcceptance Is Not About Resignation
The special needs “warrior mother” is a well-known figure. She’s the mother that kept pushing, read all the literature, challenged the doctors, demanded services, lobbied congress: in short, she changed the world and then went on Oprah to promote the book. Chances are she’s reading this right now… boy, am I in trouble! Yet how often do we hear of the warrior fathers? Crickets. When I first heard the experts murmur the A word, my defense mechanisms kicked into high gear and I immediately erected a wall of denial around…
Read More