Uncategorized
Autism Progress: A Little Independence, A Lot of Hope
Sometimes progress shows up in the smallest, quietest moments. It doesn’t always look like milestones or big announcements. It looks like midnight snacks and Ritz crackers. I heard her in the kitchen last night and assumed she was getting herself Goldfish. To my surprise and delight, when I walked into the kitchen, she was getting herself some Ritz cheese and crackers (she only eats the cheese inside, like an Oreo). She had gotten her own bowl and plate, and a spoon for her yogurt. To most people, this is not…
Read MoreLove Your Kids. Ignore the Hate.
Parenting a child with a disability is not a competition to see who has the highest functioning kid or the most severe kid. It’s not about bullying a fellow parent for admitting they are having a hard day. It’s not about alienating them because they see something different than you do. It’s not about arguing over labels or word choice. And it’s especially not about belittling a fellow parent who is newer to the journey. A parent who is asking questions. And asking for help and support. Acceptance takes time.…
Read MoreMore Than a Distraction: An Open Letter to My Son’s Teachers
To the Teachers Complaining About My Son Being in Their Class, First, I want you to know I get it. I understand that the blunt way I was told about your frustrations with my son wasn’t just about him. It was about you feeling hung out to dry. About being expected to manage him and 25 other students without the support you need. I see that. And I want you to have that support, not just for my son, but for you and for every child in your classroom. Because…
Read MoreBeing Seen Just As We Are
A few nights ago I had one of those pinch me moments. I had just put the car in park and turned off the engine. I grabbed my phone to check a message quick. I paused as I heard a siren driving by. My son Cooper, who is 14 years old, calmly touched my arm. When I looked up he smiled and pointed to the fire truck and then tapped his chest. He wants to ride in a fire truck. This I know. Together we got out and made our…
Read MoreAutism to the Front: Seeing Families Like Mine
When my son was diagnosed with severe nonverbal autism nearly 11 years ago, I remember feeling like we had the only child with autism. As we made our way home from his diagnosis appointment, we wondered where the other families like ours were. We couldn’t possibly be the only ones going through this. For so many years, the isolation continued. At first it was just a feeling. We were different. And boy did our world get small. But then for a lot of years we couldn’t safely leave our home.…
Read MoreThe Real Tragedy Behind the Diagnosis
I am a sitting board member for a local nonprofit autism group. We recently had an autism family event, and as always, I like to chat with families and fellow board members to get to know them better. Some have children older than my son, so I am always eager to soak up their knowledge and wisdom on this journey. In our conversations, one thing resonated loudly… finances. I heard stories of financial struggles just to get their children the help that they needed, whether that was proper placement in…
Read MoreAutism: I Waited Twenty-Four Years for ‘I Love You’
I love you. Three simple words. Most of us throw them around loosely.Take them for granted. We say them when we hang up the phone,when a loved one leaves the house,when we kiss our little one good night. Sometimes out of habit. It’s something a mother hears a million times over a lifetime, that is, unless your child is nonverbal. Then you might never hear it. One of those things that most don’t even think about. I have told my daughter “I love you” every day, multiple times a day,…
Read MoreWhen the World Sees My Son the Way I Do
I often say that my son’s diagnosis of autism touches every aspect of his life. From small things to big things. Even something as simple as riding the bus. See, I worry a lot. About everything. Especially when he’s not with me. When the bus pulled in the driveway after his first day of school this year, I was waiting as the big doors opened. My first question…’how did he do?’ See, as a mom of a kid who has struggled in the past, and still does at times, I…
Read MoreDisability Shouldn’t Mean Lonely
My oldest son was diagnosed with severe nonverbal autism at age 3. In so many ways it felt like it changed everything. Big things and little things. Would he ever be able to talk? Would he make friends? Would he learn to drive a car? Go to prom? Have a job? Would he ever live independently? Goodness I worried. And wondered. About everything really. His story had no clear answers. He’s fourteen now. A teenager. A freshman at our local high school. So many parts are as I predicted they…
Read MoreAutism Is a Family Story
Autism has been in the news a lot the last few days. More than I’ve ever seen in my fourteen years of being a mama to a child with severe nonverbal autism. I thought it’s what I wanted. To be seen. To be understood. To finally have people take notice of this complicated, mysterious, magical life alongside autism. I was wrong. Reading and hearing about my son’s disability, mostly being shared by people who don’t live it, has been unsettling. So much fighting. A lot of us verses them. Finger…
Read More