Cooper has always reached for a hand to hold when we are in the community. But not just any hand. Typically mom or dad. He likes the comfort of us walking alongside him. Sometimes we lead. Sometimes he does. But he’s always an arms length away. We often refer to him as a little old man. Cautious. Careful. He points out ice and mud and dangerous terrain with a point and a gasp. He likes to lean in for hugs too. Which I soak up. On our walk tonight, my…
I don’t understand anxiety but I’m trying. Most nights, after my son has fallen asleep, and I’ve tucked him in for the last time, I study his features and listen to his breathing. It is calm. Finally. When he sleeps, his worry is gone. It releases him for a few hours. I am thankful he can rest. Most nights I feel like a failure because I can’t take this burden from him. I can’t seem to fix it. Anxiety is slippery. It is sneaky and seemingly impossible to catch. But…
Along the journey as a special need mother, we carry so much baggage. From the moment of diagnosis for our child; we immediately pack on the enormous amount of luggage full of worries, expectations, and thoughts of doubt. We see everything that is needed to be done and we begin to think of how we will accomplish it all. We riddle ourselves with self-doubt and become overwhelmed at the thought of another task to be added to our overrun schedules. But somewhere along the way of our journey with our…
I see you, and I feel your heartache. I understand that every single day is a back and forth balance of finding the joy and grieving the life you thought your child would have. Your days are now filled with therapy appointments, IEP meetings, arguments with insurance and sleep deprivation. You are now leading a team of educators and therapists that you didn’t sign up for, or ask to be a part of. But you know it has to be done. Own your seat at that table, you are important.…
Why can’t you be more, well, normal? Have fun for a change! Blow bubbles in the summer breeze and chase waves in the ocean and jump into big piles of autumn leaves. Make friends. Go to birthday parties and sleepovers and on camping trips. What if I can’t, he asked. Try harder, they answered. Try bigger. Try with everything you have. I am trying. I am all the time trying. Be a normal kid. Say hello when someone talks to you. Shake hands. Hug people good-bye. What if hugging makes…
Is this our forever? A good friend recently asked me what kinds of things my son Leo was interested in these days? “Toy Story, like always,” I responded, chuckling at the thought of how often I’d responded similarly over the years. For as long as I can remember, Leo has been transfixed by the popular series of films; his love for Sheriff Woody, Buzz, Andy, and the rest of the Pixar gang, have stood the test of time, resulting in a most impressive collection of Toy Story merchandise; from figurines,…
Sometimes it hits me when I least expect it. I was sitting in front of my computer reading my son’s high school athletic Facebook group post. “Any parent of a boy or girl in grades 3-6 interested in volunteering as a water boy/girl for the varsity football team, please respond.” So I went to that imaginary place in my mind. I pictured my daughter on the sidelines holding the rack of water bottles proudly watching her brother and his teammates play football. She smiled excitedly as the whistle blew and…
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…
My Husband. I love him with all my heart. Every fiber of my being. I have loved him since I was 16 years old. I don’t really know anything else. And to be honest, sometimes I don’t even like him. We don’t see eye to eye on many things. We fight a lot. He doesn’t think the the things I think are important matter. At all. And frankly, it irritates me. Can’t he pretend to go along? He will humor me, but still, not happily. We have never had a…
Dear Mums, Dads and Caregivers, I want to ask you to do something. Can you look back and think if you’ve ever taught your children about diversity? About people’s differences…that not everyone’s the same? It can be race, disabilities, the homeless, religion and so much more. Have you had a conversation about how not everyone’s the same and how important it is to be accepting of that? When Lace was little, I worked in an accommodation house with adults with disabilities. I used to bring Lacey in and let her…
