Posts Tagged ‘Special Needs Parenting’
The Right and Wrong Reasons to Advocate
I have a message to send loud and clear. A true, honest advocate fights for the child, adolescent or adult whom they are representing. They will position themselves to partner with all parties involved – the parents and/or other caregivers, school personnel, aides, the therapists, the case managers – and will not set out to make enemies of any of the aforementioned parties or convince caregivers that this is an ideal strategy. Sending a message that insinuates that the majority of teachers and therapists are out to make someone’s life…
Read MoreRaising a Future Advocate
Dear fellow momma at my sons therapy center, Today, you may have heard my oldest ask, “who’s that yelling?” I thought we covered autism, but I was so focused on explaining her brother’s autism, I forgot to go into detail about the whole spectrum. I took this as a teaching moment, but you weren’t in the car with us. There’s no way you would know this. My daughter is the sweetest, most compassionate kid I know. She’s also naturally very curious. Her question stemmed from curiosity. But we talked about…
Read MoreWhat’s Your Name?
We walked into our favorite Thai restaurant to pick up our carry-out order when my 7-year-old son James began greeting all of the customers. “Hi,” he said with a huge smile to each person we passed. For the last several months, James, who was diagnosed with autism at two, has developed a love for meeting new people and learning their names. For a while he would just point at people and say, “Who’s that?” So, with our team of ABA therapists, we have been teaching him to introduce himself. I…
Read MoreHe Never Gave Up On Me
I have a son. Three actually. They are all very different. My oldest is 9 years old. His name is Cooper. He was Cooper from the second I found out I was pregnant. There was no other name. Although we don’t really call him that anymore. We call him Snoopy. And Snoops. And Snoopy Joy. And sometimes even ‘turn it down.’ He is the most complicated, easiest, and interesting person I know. He doesn’t say much. But yet never, ever stops making noise. He moves really fast sometimes. And other…
Read MoreWe Get Forever Together
This morning I was trying to distract your baby brother by doing This Little Piggy on his toes. I was exhausted. You had been up since 3:45 AM and the baby had been up 4 times throughout the night. It was safe to say mama was not in the best mood. But you boys were. Happy as can be. Loud. Running. Laughing. Getting into everything. I grabbed your brother and plopped him up in the chair and started saying the words in my overly dramatic way. ‘This LITTLE piggy went…
Read MoreManifesting Gratitude
A few years ago, I was scrolling through a Facebook group called “Mom’s of Trach Babies” as I often did, looking for suggestions or tips for taking care of my sweet son Jacob and his tracheostomy. Jacob had a rare neurological genetic disorder and he depended on us for everything. I feel like there was a point where it would have sounded silly that we found better information from a Facebook group than from some of the doctors we encountered, but now, its fairly common to find valuable and needed…
Read MoreTime is a Thief
Twenty months old. That’s how old you were when we welcomed your sister into our family. You wouldn’t go near her at first, and even now you rarely act like you notice her. Leading up to her arrival everyone would ask if you were excited to have a baby sister. They would ask if you showed interest in my growing belly. You didn’t notice it one bit. It didn’t phase you even a little. They would talk about how fun it would be to have two so close in age.…
Read MoreI Cried
I cried when you were diagnosed. I cried because I thought I did something to cause it. I cried because I wondered if I would ever hear your voice. I cried because I wanted you to live the childhood I imagined for you. I cried because I wanted you to have a typical relationship with your sibling. I cried because I worried that you wouldn’t have the capacity to learn. I cried because I worried that you wouldn’t have the capacity to love or be loved. I cried because you…
Read MoreWhen Parent Turns Into Caregiver
Being a parent is something I always dreamed of. Being a parent meant raising my kids to be great people, to teach them values like kindness and honesty, and hopefully send them into the world as adults who could make a life for themselves. When I was pregnant I imagined their milestones in front of us. Finishing primary and secondary school, hopefully onto college and graduation and lastly a career that they loved and that both challenged and fulfilled them. In the same breath I imagined myself and Brian as…
Read MoreImagine Something Hurts
Imagine something hurts. But you can’t tell anyone. You want too. You try even. But it comes out in different ways. Ways that people don’t understand. You try to get attention. But they won’t listen. You scream. You hit your head. Because that’s where the pain is. The screaming makes people frustrated. The hitting makes people stare. You drop to the ground because you are exhausted. You roll. You try to get the pain out of your head by pressing your ear to the cold, cool ground. People stare more.…
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