As the parent of a child with special needs, I often get thoughts and opinions about my parenting from family, friends, and sometimes even strangers. It always leaves me feeling a bit perplexed. I don’t see myself as anything but a regular Mom with different challenges. “You are so strong” Not really, I am walking through my days just trying to do the best I can for my child. Sometimes I feel like I may break, but I keep that to myself. “I don’t know how you do it” It…
No one has the right to limit or devalue another person. I’ve been thinking about this so much lately. Sometimes I wonder if people realize that they are doing this through their actions, words, and (mis)treatment of others. Sometimes when people learn that my son Stalen is non-speaking, they immediately count him out, ignore him or underestimate him. It’s as if they think the world revolves around being able to speak but that’s simply not the case. Worth is not determined by spoken words. Stalen may be non-speaking but he…
I saw them before they saw me. Cautiously walking into the movie theater. A mom. A son. The boy was big. Taller than me. He had headphones on. His hands danced like my son. He moved fast and slow getting the lay of the land. I greeted her immediately. I knew she was with us. She was kind. She was looking for her people. ‘After our kids get older, it’s so hard to meet people. Once they are in their twenties…’ her sentence trailing off as she followed behind her…
You, my sweet girl, Experience the world Around you, In a completely different way Then other people may. But just because it’s different, Doesn’t make it less than. Maybe we should take Things in the way you do. You may not play Pretend Or use toys the way Other children do. But that’s ok. Play is play. And a child can play In their own way. For example, You find the greatest joy In watching things scatter. A cup of water being poured Is your greatest treasure To explore. Sand…
You see a child lying on the floor watching an iPad in front of the tv. I see progress. I see hopes and wishes happening. I see a child who joined our family for a movie tonight. See, it doesn’t happen all that often. Typically, he stays up on his room watching the history of the great American railway or John Deere tractors. But tonight he came down. He joined us. He brought 3 blankets. And his stories on his iPad. He started on the couch. But prefers the floor.…
I’ve been quiet today, no social media posts, spending time observing my son, I took a walk in silence this morning instead of with my AirPods in. Yesterday evening my son Jackson, who was diagnosed at age two with level two autism spectrum disorder, had a really difficult time in the grocery store. He yelled at us in protest, he hit us and the shopping cart, he had behaviors that you wouldn’t expect from an almost nine year old boy that is nearly five feet tall. We’ve learned to remain…
To my beautiful daughter, I sit here and watch you try to answer questions. I can see how hard you are trying. It makes my heart ache seeing how hard it is for you. A task that should take such minimal effort. At the same time, to hear you answer with such pride and confidence when you are understood and correct, fills my heart up, and I can’t help but smile. I am filling out a questionnaire, an endless one, it seems, all about what you can and can’t do.…
To our Second Child, I want to start by saying your dad and I love you very much. You have always been planned. I say that because people might make jokes about our age or the age difference between you and your brother. You have been planned since the day your brother was born. I pictured having two kids, I envisioned you and your brother playing in the backyard while I watched out the kitchen window. I always thought you would be two or three years younger than Henry. Those…
Glass child is a term used to define a sibling who has a brother or sister with a disability. These siblings are unique individuals and they often sacrifice time with their parents. This often leads to stress as their parents are often dealing with challenging behaviors, constant therapies and doctor appointments. They strive to be cared for and their emotional needs being met. The list can go on and on. In the end, what they get from their parents at the end of the day is only a fraction of…
While more is being discussed about the importance of authentic autism and disability representation on screen, we can’t forget to write more autistic and disabled characters of color if we truly want to embrace inclusion. I posted a question on my Instagram page asking people to “fill in the blank” and name their favorite autistic TV character. The top four answers were Shaun Murphy on “The Good Doctor,” Sam Gardener on “Atypical,” Matilda on “Everything’s Gonna Be Okay” and Max Braverman on “Parenthood.” All four of these characters are white.…
