From the minute you become a parent, the overwhelming fear and concern sets in. You constantly question whether every choice or decision you make on your child’s behalf is the right one. When your child has special-needs, the endless self-doubt triples. The options for schooling seldom are plentiful or a perfect fit, so when an appropriate placement is agreed upon, it is not done without careful planning and discussion among all involved. As the start of each school year draws closer, I often think to myself “I hope Skyler doesn’t become the…
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…
There is a term I like to use. It’s blissfully unaware. It’s a place and feeling rolled into one. Many of us do this at different times in our lives. We live blissfully unaware. For example, I knew nothing of the emotional pain of a miscarriage until I lost my first baby. I knew nothing of the worry that comes with a child that isn’t developing typically until it was my own son. I knew nothing of the cruelness and brutality of cancer until it took my stepmom. I knew…
Every morning I wake up to messages from people. Most are well-meaning. Many are kind. A few are awful. Some are bizarre. And some, tell me how to raise my son. And how I’m doing it wrong. They tell me what I should be doing, how I can do it better, and what I can and cannot say about him. I’ve gathered a list of what I cannot say. I cannot say he has autism. Or is autistic. I can’t say he is nonverbal or nonspeaking. I can’t say he…
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…
Dearest Daughter of mine, I don’t know how I would do this thing called life without you! Having a little brother with a disability isn’t an easy job. But you do it with such grace and empathy. Every day from the moment we wake up you start caring for your brother. Before I even make it downstairs you grab him a drink and make sure he has gone to the bathroom. You do these things without me even asking. You bring so much light and joy to our family. I…
A letter to my son, As we approach your 3rd birthday I can’t help but reflect back on these past years. It’s just been you and I from the start. And although some day’s feel like an eternity, I still catch myself wondering ‘where has the time gone?’ God made me the luckiest woman alive when he chose me to be your mom. Thank you for your tender kisses, and for your ferocious hugs. For showing me in return all the heart and soul I have poured into you,and for…
My son was diagnosed with Autism at the age of 3. But I can honestly say that if it hadn’t been for his Speech Therapist at the time, he still may not have a diagnosis. That’s how far into the black hole of denial I was. The funny thing about denial is that no one can pull you out. You have to do it own your own, but there are people that can be that light you reach for. And my son’s first speech therapist was that light for me. …
Genevieve Ann. There’s a lot that I can say about her. She’s fierce. She makes me laugh. I know if I call her I’ll feel better. I don’t dare miss a Thursday call from her. It’s been our thing since I was little. There was that one time in college where she called me 3x’s upset that I didn’t call her because it’s Thursday. Then she realized it was Wednesday. She and my Papa made quite a team. I remember I wanted my marriage with whoever I married to be…
To my Johnny, I can see it now; The chaos, the fear, the love, the moment you entered the world. It was 10:31pm and the room was full. Nurses and staff running about, Gad, Grammy and your Aunt cheering with joy, machines beeping and a baby crying. In a strangely unceremonious way you were laid down on my chest facing away from me, curled up in the only position you had ever known. I remember trying to ask if I could see your face and it going unheard. I felt…
