TheMessyBlessyMommaMovement

 In 2015, when my daughter was diagnosed with Autism, my life ended. Or so I felt. This wasn't the type of autism that parents work through and watch as children flourish, navigating traditional education and eventual life on their own, but instead the type of autism that needs support, most likely forever.  Initially, people would pause and say "you were born for this" or "if anyone can do it, it's you" but in that moment, in that season, I didn't think I could and there are still days that I continue to feel as if I can't. As if autism is too much. There are also moments of elation, where I pause and think, I'd never dreamed we'd be here while she tries to talk to a family about a baby or a young child and their milestones and in that moment, someone sees her for who she is and engages and accepts her yet still there are other moments, where I catch my breath thinking, "will she ever be able to...." and those moments cause me to p...

Last year, my daughter attended a field trip with her peers in a general education setting. When moving to North Carolina, I expected education to be different and with a school district the size of Wake County, I recognized that the peers my daughter would have wouldn't be like the ones we had in our small New Jersey town. You see, where we were, families were known. All families. Children were included. All children. While life was not perfect and barriers needed to be broken, those of us raising children with additional support needs had a wealth of support in our local disability groups and also many of us found support from families that unlike ours were raising children with typical abilities. When we arrived in North Carolina, with an intense IEP, the teachers did what they could do honor it but the "inclusion" portion was a challenge. Our school segregated students in extended content from their typically developing peers. I shared my expectations of inclusion and...

  Long ago, most days, I wore long sleeves. I often piled makeup on to cover the black eyes or my eyes shadowed in darkness for the fear of the life my daughter was living and her future.  One evening, my daughter raged. In all my life I had never seen my father sad, truly sad. Helpless, until that day. I drove home, waiting for my daughter to settle. In those moments, the sky clouded and the sun began to set, the bright rays faded and the beauty of the day. Tears streamed down my face as I gripped the steering wheel with the recognition that my daughter did not have the autism I saw on TV, nor the autism that self-advocates spoke of. In fact, in those days, her words were few and far between. My daughter has what is now being dubbed "profound autism". This doesn't mean she doesn't speak but her words are infrequent and sometimes confused. She needs prompting and vigilance. Her autism needs consistent supports for life. Not just for school or behavior for life. To und...

 Years ago, I spent time writing deep into the night to share my feelings about the journey we faced with autism. For those who know us now, you wouldn't expect that there have been times where I sat in Target, Seraphina cradled in my arms as she flailed about having a meltdown because of a jar falling off a shelf or some other oddity I couldn't make sense of.  One particular time I was in the bread aisle, and something startled her. Within seconds, her body began to shiver, and her head flipped back hitting the plastic on the cart, she writhed as if she was in significant pain. Her little purple coat went flying, she shimmied down and found herself out of her seatbelt and on the floor. Within seconds, I met her there, bringing her in as her arms and legs flailed. She clawed at my face and pulled my hair. Nothing could calm her. Some of my other kids were with me and by this time knew we had to let her meltdown happened for her body to come back to regulation. As this went on,...

 To say I am "Type A" is putting it mildly. Growing up, as an only child, I consistently heard that I had to learn to be more flexible, I had to be aware that things in life could and would change. I think back to my heartbreak time and time again when things didn't go just as planned. I would often hole up in my own world questioning how I could make it work out my way in the end and often I was disappointed. I had high standards, for myself and everything around me. In 2015, when my daughter was diagnosed with autism, I was still inflexible. I liked things laid out, properly or what was properly in my mind. My expectations for myself and those around me spread out onto the lives of my husband and children. Perfection was the only answer, in the home and in the presence of others. Slowly, I have learned to let go of what you cannot control. And when I say slowly, it's taken me 8 years to get to this place and sometimes I have to remind myself to be flexible.  Often, ...

  For a parent hearing the words, your child has been given an autism diagnosis, in that moment, their life will forever change. While autism has a spectrum as vast as an ocean, in that moment, that parent is united with other parents who like them choose to honor and accept the birth of a new life that they never expected. When my daughter was diagnosed, I anticipated how the process would go, what therapies she would need and how we would access the support that was necessary to help her grow into a strong, independent adult, with few barriers and limitations. As our daughter has grown, so had my understanding of raising an autistic child. I no longer anticipate anything. Instead, I honor everything. I recognize that all parents want success for their children with few barriers and limitations however, all people, autistic or not will face adversity, sorrow and sadness. This week at church, our Pastor spoke of the fact that there was a woman present, she was celebrating her 100th...