I’m not sad about our lives. It’s never been sadness. Its been sheer terror. I have been terrified. What will his life be? We are so close to adulthood. What am I suppose to do now? Do the angry autism advocates online realize the thoughts running in my head? The ones where I can’t ever die because I have a child who will never live independently? Do they plan on picking him up and caring for him when I am 80? No, I’m not a “martyr mom”. I’m a terrified…
My husband’s team lost their football game Friday night. It was a tough loss to a rival and I know many people would love to forget it ever happened, but something wonderful happened at that game that I hope I never forget. I was tired and almost didn’t go. It had been a long week at school, but I felt guilty for missing last week’s game. Eli reconfirmed my decision to go when I told him we were going bye bye and he replied, “football?” The fact that he remembered…
When Sawyer was three he asked me if we could go to a fair. I of course said…’yes, but we have to wait until summer.’ Per the usual he said to me…’can my brother go?’ I told him no. His face immediately fell. ‘Cooper can’t go with us buddy.’ I went onto explain how the fair will be too scary for him. ‘Too many sounds and people for Cooper.’ He thought about that for a minute and then looked up at me and said….’is that because he has autism?’ And…
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. It…
A high-pitched, eardrum-puncturing, almost inhuman scream came from behind me. The sound quickly filled the room and immediately pierced my heart. Instead of turning around, I reached for the door handle, shut the door tightly, leaving her on the other side. As I walked down the stairs, her screaming never let up. I went outside, sat on our porch swing and began to gently press my bare feet into the pebbled pavement causing the swing to sway slowly back and forth. The warm rays of the sun and refreshing cool breeze beckoned me to look upward,…
Want to hear about bad timing? My nephew, my little sister’s first child was born around 4 am on August 7, 2014. At 10 am that morning I was told that my 10 week old fetus had no heartbeat. The next day, my 31st birthday would be spent physically ridding my body of the baby I had prayed for…for a year. I have a photo of me holding my beautiful nephew Jackson that day. I genuinely felt such happiness for my sister and brother in law but in the picture…
Dear Parents, I remember the first mother who told me it broke her heart that her little boy couldn’t tell her about his day at school. I thought about it on the train home, then while I made my dinner, and again as I fell asleep that night. I thought of one of my Mom’s favourite stories, about how I had come home from my first day school and proudly announced I was “the best of a bad lot”. I thought about her smile when she tells this story even…
Since the day you were born, I knew that being a Mom was my purpose in life. I loved every single moment. The late nights, the cuddling, even the poopy diapers. That feeling, knowing that someone needs you… is amazing. Although, I thought it would only last for a little while. The needing. The constant. Now, you are four. And you still need me just as much now, as you did when you were a newborn…and I can’t help but wonder if that’s how it will be forever? Will you…
My son, I have never met a person who works as hard as you just to live in this world. I think so often we forget that this place simply doesn’t make sense to you. Or kids like you. You like and need things different than the norm. It’s too loud, too bright, too smelly. It’s crowded and overwhelming. And people just don’t understand you. They don’t take the time to listen or see you or understand. But every single day, you persist. You try. You practice. You adapt. You…
To the people that live outside of the special needs world. Here are my truths: Parenting is hard. So is special needs parenting. I’m allowed to say that both are hard at times. Talking about the realities of severe autism is not negative. It’s not pretty and wrapped up in a bow. It’s very real and raw. And until you live it, please be kind to those who do. I will be raising a child who needs lifelong care until the day I die. While other children leave the nest…
