Posts Tagged ‘Special Needs Parenting’
I Can’t Ever Die
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…
Read MoreGood People Don’t Bully Other Parents
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…
Read MoreThe Heartache of Early Autism
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,…
Read MoreBad Timing
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…
Read MoreA Message From Your Child’s Occupational Therapist
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…
Read MoreI Need You Too
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…
Read MoreMy Special Needs Truths
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…
Read MoreAn Open Letter to the Parent of a Child with a Disability
Dear Parent of a Child with a Disability, I saw you today at the local children’s hospital. Your body looked worn from the long days of countless appointments, multiple doctor visits, and always being on watch for another possible seizure stealing your child away. Your hair was pulled up in a ponytail, enabling you to always be able to react to any needed circumstances. Your little one lay her head quietly on your lap, she, herself so worn from the past 75-hour hospital stay. Yet, you smiled kindly on her,…
Read MoreThank You to the People Who See My Son
I want to thank the people who see my son. The people who ask how he is doing. Who on a Facetime say, ‘Let me see the boys. And Cooper too.’ Because while Sawyer and Harbor are demanding to talk and be seen, Cooper is not. Thank you to the people who wave to him on the street and say hi without needing a response. Who talk to him, even though they know he won’t answer back. Who aren’t afraid of his protesting at the park and instead ask him…
Read MoreThe Only Moments That Matter
This morning I saw a commercial. It was for some insurance company. Perfect family, house and kids. The oldest graduating from high school. The tag line something like…these are the moments we prepare for. The only moments that matter. I’ve been thinking about it all day. My mind keeps going back to it. The only moments that matter… First day of school. Graduation. A college acceptance letter. First job. A promotion, Marriage. Babies. Retirement. But what if a person doesn’t achieve those moments? Does their life not matter? My son…
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