By Guest Blogger Christina Holder
Let me start off with the fact that I am a tattooed mother with the sides of my hair shaved (or dyed) and painted black nails. I’ll pause for the criticisms and head shakes. In case you’re wondering, yes I am college educated. No, I do not use drugs or drink. And contrary to popular belief, my tattoos are not an indicator of me being a criminal. My record is clean.
My point is I am used to the looks, whispers, false judgements and criticisms of strangers because I am different. I chose to be different. My children, however, did not. They don’t deserve the false accusations of being called brats or unruly because of their meltdowns. Yes, they really only eat four foods, and n,o I can not force them to eat more or punish the autism and sensory processing disorder out of them. You may not be able to see their illnesses. They look like any other typical six and two year old, but their struggle is real.
Six years ago my oldest daughter was born and my whole world changed. Her name is Zoe. She was born four weeks early and wasn’t breathing. They let me say goodbye without ever holding her and took her straight to Brenner Children’s which is now like a second home to us. Zoe spent 13 days in the hospital before she was sent home. Within the first couple of months we knew something was different. Zoe continued to stop breathing and her muscles were either very stiff or like jello. She would not look when we would call her name and she didn’t reach her milestones on time.
After many doctor visits, it was discovered that Zoe had sustained a traumatic brain injury when she was born from lack of oxygen. She also was diagnosed with mild cerebral palsy and sensory processing disorder. She received four different kinds of therapies, wore ankle braces until she turned four, and that’s when she aged out of the Children’s Developmental Services Agency (CDSA) program.
We continued to notice our daughter was very different from other kids her age. Zoe would rock back and forth, spin, scream and hit for no apparent reason and line up toys and random objects. But, because she is exceptionally smart and verbal, it wasn’t for another four years until we got her diagnosis of high functioning autism.
Looking at Zoe she is the “typical” little girl, aside from her rocking, singing and repeating her thoughts and sudden meltdowns for no apparent reason and without warning. She is like any other little girl in your neighborhood. That’s where the problem lies.
It is only recently that mental illness, intellectual and spectrum disorders have been addressed more in the news and media. Getting resources and help for people with invisible disorders are hard to come by in small towns like Ramseur, where we live. We have resources for babies and children three and under with our local CDSA, which is beneficial for my two year old daughter who has severe sensory processing disorder, but not for older children.
My younger daughter, Nova, displays many of the same traits as Zoe but is more severe as she does not eat solid food. She receives two different therapies and is being evaluated for autism. Because Nova is only two she can still receive therapies through the CDSA but in a year she will age out and we will be in the same boat with her as we are Zoe.
Zoe is on three different waiting lists for therapy for her autism, including TEACCH, Autism Society of Greensboro, and BCPS (Behavioral Consultation and Psychological Services) located in Winston-Salem. All are over a year long and all are in bigger cities over 45 minutes away. With Zoe and Nova’s conditions and the accommodations they require, Zoe is home schooled and Nova does not go to daycare. Zoe wears a medical ID bracelet with mine and her father’s phone numbers on it at all times because she runs away when overwhelmed or upset. She and Nova also rock back and forth as a coping mechanism and we’ve replaced a couch and have put a metal backing on the new one from it.
As a stay at home mother, and my husband being the sole provider for a family of five ( I have a step daughter that lives full-time with us as well), we cannot afford to drive a hour or 45 minutes away to therapy multiple times a week. We have one car and neither Zoe or Nova receive disability.
I do not seek out help to change my daughters; there is nothing wrong with having a mental, intellectual or spectrum disorder. Instead I want to increase awareness, support and the number of local resources to ensure their safety – and ultimately enable them to live their lives to the fullest.
Awareness is a necessity, especially in today’s society. Next time you’re in the supermarket or gas station and you see a tired looking mother or father with a screaming child think twice before you judge. Just because they may look like they are being disrespectful or over-dramatic, it does not necessarily mean they are. They could be struggling with sensory overload from an invisible Illness, and the mother or father would probably appreciate a kind smile rather than a judgemental stare.
Resources are also a necessity. If Zoe could receive the therapy she needs she could be transitioned into a public school setting and learn how to interact with people, which is something she also struggles with. While there are so many great organizations and therapists out there for children and adults in the Triad (which you can find in this Special Needs directory on Triad Moms on Main), there also needs to be more resources made available in small towns for people with mental illness, intellectual disabilities or spectrum disorders so we can help those in need (especially if it is not available near their home, or if they have aged out of the programs that are available).
Thanks for letting me share my story, and I would love to hear about your journey as well. Are you experiencing these same challenges? What has helped you?