TheMessyBlessyMommaMovement

 Dear Mr. Kennedy, On Friday whispers of the upcoming reasons behind autism spectrum disorder began to infiltrate our nation. First on social media and then with news articles letting us know that your initial proclamation of identifying the root cause of autism was going to be announced. September arrived last week, and I began waiting with anxiety for your knee jerk announcement knowing that appropriate research was not and could not have been completed in just a few months.  I will tell you first and foremost, I appreciate your interest in finding a cause for autism, especially the type of autism our family lives supporting--profound autism, where at any given moment my daughter can aggress or elope and her cognitive ability remains nearly constant at about age 7 and socially she's about the age of a kindergartener in her nearly five foot frame that is enamored by puppies and babies. I understand what it is like to watch her struggle and watch others shun her when she trie...

 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...

If you think Autism Acceptance is a month, you haven't had the opportunity to truly know someone on the autism spectrum and as they say, no two individuals with autism are alike, and that is 100% the truth. I don't pretend to know the journey of other families that have children, siblings or parents with autism, though at times I am grateful to know some of the experiences that we have, or share are shared by others walking a similar path. Autism acceptance for our family, is every day, it's in waking wondering just what type of place or space Seraphina will be in. It is in working together to make her quality of life as good as everyone else's in the family. It is being proud of her even in the difficult moments when she may make embarrassing comments or have a meltdown in public. Autism Acceptance is introducing our daughter to others to help them grow in their own journey in life. Autism acceptance is educating others on autism and what our version of autism looks li...

 Every year we enter into the month of April, I begin to question what the month will hold and unveil for myself as a parent of a child with autism. My daughter is wonderfully made but lives with autism that impacts her life in every aspect. I recognize our journey is unlike anyone else's journey living with and loving an individual with autism. As a parent, I have identified myself as an "autism mom", I have been told I don't have the right to identify myself as such as I don't have autism. This statement made me realize while those of us impacted by autism share a diagnosis, we do not share the same journey and we must always recognize that there is no right way to walk this journey only to choose to continue to walk the journey. As we near April, I will be sharing what I have learned, working to raise a child with autism and what I have learned from walking the journey side by side with other people impacted by autism and what I have learned from individuals ab...

  An Open Letter to the Mother Raising a Child Bullying Mine, I want you to know that I don't fault you. I know when you get those calls about your child having done something to another child that your knees grow weak, and your breathing grows shallow. I know you pause and think back to the child you once rocked, tenderly in your arms and glanced at over your shoulder while cooking dinner. I know your child isn't a bad person nor do they probably recognize what they are doing and how it impacts others. I know at some point, your child probably felt alone or inferior or that they weren't good enough. In fact, they may still now. I know Mom that you have talks with your child and I know you want your child to do better. I also know you probably think I hate you and your child. I think you probably think my child does too. That is entirely not true. Yes, I hurt for my child. I am processing how to best help them to grow stronger through adversity to understand that your child...

  Dear Mom of a Newly Diagnosed Child, Right now, you may be hearing so much. "You were born for this.", "God doesn't give things to people you can't handle", "I'm so sorry".  You may hear "You are so special". "This is a gift". You may get asked "Are you okay?", "What is your child's special gift?".   Reality is you may just be hoping that you can make it through the day, the hour, the minute. Reality is you may only be able to just breathe.  No matter what you are feeling, no matter where you are in the newness of the diagnosis, no matter how you feel, it's all okay. In 2015, my daughter was diagnosed with autism. While I knew she had autism going into the doctor, the confirmation shattered me. While I kept it together in the office, as we buckled in for the 40-minute drive home, my heart began to hurt. I physically felt ill.  I cried. No, I sobbed uncontrollably as every thought about autism an...

It starts in July. I begin to think about the summer season turning to fall. Before I can even begin to enjoy the summer sun, I am reminded of our world, how it is different and what is to come. Every year as we enter school, I begin to feel a knot within my stomach. As I watch and parents begin talking about back-to-school shopping, I think back to what was, before a disability changed our world and recognize what is. That feeling, of being unsettled, wondering how I will meet the needs of my typically developing children and recognize the needs of my daughter who is disabled leaves me living a life fraught with anxiety and it is a constant reminder that our world, living with a child who is disabled sets me apart. As days pass by, into mid-September when people begin to post photos of their children returning to school, I wonder, "what if?" and "why me?". While I can now celebrate my friends' children (and I really do), I pause when people ask me what grade my...

I never really thought I would utter the words “I’m thankful for autism” though I have and while I certainly have moments of self-doubt, feelings of being overwhelmed, wants of wishing life was easier for my daughter, there are so many things that I am thankful for, because of autism. First, autism has allowed me to gain true friends. Choosing to be a friend to a person or with a family who lives with a loved one on the spectrum can be overwhelming. There have been countless friends that have come and gone but autism has allowed me to see who truly values myself, my family and my daughter for who we are. They listen when things get tough, the pick us up when we are down and they never ask for an apology when we have to leave someplace early because of well, autism. These friends, some old and some new choose to say “yes” to us even when saying “no” would be easier. For them, I am thankful. Second, autism has given myself and my entire family a better understanding of what is most impor...

  Last year about this time I posted a blog about inclusion. I feel   everyone should be included   to the best of their ability no matter what their extra needs or disabilities may be. Certainly, a child with disabilities should not bring trauma to your own typical child, but my own children have had more struggles with typical children than they ever have with a child with disabilities. In fact, they have learned more from them than their typical peers. That being said, I know that when paperwork came out regarding your child’s teachers, some people received a notification that their typical kiddo was in an inclusion class. I also know it upset some parents. How do I know? Truth be told, some people don’t know who I am and share their feelings unaware that  my  child is the inclusion child in  your  child’s class. Yup. That is her. First, let me tell you a little about her. She’s beautiful inside and out. She cares for babies and puppies. She has an ...