Posts Tagged ‘autism blog’
I’m the Lucky One
I used to lie in bed at night trying to figure out if this will be all okay. Severe. Nonverbal. Autism. Anxiety. ADHD. Long term care. Guardianship. A whole lotta words. Scary words. Sometimes I wonder how one little 8 year old boy can have so many descriptors. What they really mean, when you add them all up, is that you will have challenges that you will have to overcome. But more importantly, they mean the world isn’t designed for you sweet boy. You will spend your whole life trying…
Read MoreAutism, the Invisible Disability
I see you. Walking in front of me. You are here with your family. Your significant other to the right of you and your toddler walking in front of you. It’s the perfect day to visit the aquarium. It’s a Monday and not busy at all. That’s why we are here too, on a Monday. You see, my son, Zachary has autism. Severe nonverbal autism. We like to go to places when the crowds are low and so is the noise. I know you see us too. You have turned…
Read MoreBefore Autism
As my youngest baby’s first birthday approaches, I find myself thinking a lot about Cooper’s early years. He’s almost 9 now. If he went to public school he would be in third grade. A big boy. Double digits not far off. I look at this photo and I remember the desperation I had back then. The worry, fear and dread rolled into one fake smile plastered on my face. In a way my memories are starting to dull. The details not quite as sharp. The pain and worry not quite…
Read MoreIn a Blink you are a Senior
In a blink, seventeen years have come and gone so quickly. This year is your senior year and I couldn’t be more proud. You are happy and finding your way. You have friends, are learning skills to work and even talk about living with friends, not to mention you talk nonstop. It brings me to tears for more reasons than one. Those earlier years were so tough. You couldn’t talk until you were seven, but now I swear you make up for lost time. Time seemed to go by so…
Read MoreNot the Life I Pictured
Some kids go to hockey practice and baseball games. Or theater or an art show. Play dates and birthday parties. That’s what a parent imagines. Cooper and I used to have nothing like that. No outings. No games. Oh how I longed for something. Anything. A place that we could go to together. Now we go to speech together. We go to grocery stores and Target too. We visit places in our community. We visit parking lots just to learn about cars and strangers and practice waving. We always seem to…
Read MoreI Saw You Judge Us
I saw you. We got in line behind you at one of the snack stands. You had three kids and another adult with you. Your kids were calm. Patient. Quiet. Speaking politely. I saw you. I saw the look on your face change from smiles to annoyance as my three year old began to get very active…trying to run. I saw you. I saw you roll your eyes as his meltdown started. I saw the nasty look you shot our way before muttering something to your companion. I saw the…
Read MoreIt Isn’t Really Something to Fix
Kids are complicated. And everyone has an opinion. I mean every kind hearted, well-intentioned family member, friend, nurse, doctor, therapist and sometimes stranger has an opinion on your child. Some of them are good opinions, some misguided, and a few of them probably make you want to throw something at them. Doctors. Therapists. Visits and appointments. Scheduling and shuffling. Integrating multiple therapeutic strategies into your home on a daily basis, all while balancing all the normal day to day things. Parents and teachers of special needs, I know you get…
Read MoreThe Doctor who said, Your Child is the Least of my Concerns
My daughter is autistic and started having seizures at age 11. I remember the day I got the call from the school nurse that she had a seizure in class. I actually expected it at some point due to her neurological issues, so it didn’t take me completely by surprise, but it was terrifying nonetheless. We already had a neurologist so we had the 24 hour EEG right away which confirmed she was having partial complex seizures. The type where you just kind of stare off into space for as little…
Read MoreSpecial Needs Parenting Changes Us Entirely
Special needs parenting changes us entirely. There is no denying that. Because the truth is — the first few years are going to pull you so far away from who you used to be that you won’t even recognize yourself anymore. You’ll find yourself looking in a mirror, bags under your eyes, either heavier, or skinnier, and not recognize yourself. It looks and feels like you’ve aged a hundred years. Or maybe you are standing in a crowded room, feeling entirely isolated and alone, and wonder if you are invisible.…
Read MoreYou Can Feel Sad and Love Simultaneously
You can feel sad about your child’s diagnosis and still love them with every fiber of your being. If you do, I want you to know that you’re not alone in your feelings. It doesn’t make you a bad parent. You may feel powerless, frustrated, and depressed. I know I’ve felt all this and more. I’d kept these feelings to myself for a while because I was ashamed. I was afraid to admit them. I love my son Charlie, so the sadness that engulfed me was confusing. For a long…
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