By Guest Blogger Christina Holder
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, I am college educated. 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.
I am used to the looks, whispers, false judgements and criticisms of strangers because I am different. I choose to be different. My children with special needs, however, do not. They don’t deserve the false accusations of being called brats or unruly because of their meltdowns. They really only eat four foods, and I cannot force them to eat more. I cannot punish the autism and sensory processing disorder out of them. You cannot see their illnesses. They look like any other typical six and two year old, but their struggle is real.
My oldest daughter was born six years ago, and my whole world changed. Her name is Zoe. She came into the world four weeks early and wasn’t breathing. I said goodbye without ever holding her. The doctors took her straight to Brenner Children’s which is now a second home to us. Zoe spent 13 days in the hospital before they sent her 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.
The doctors discovered that Zoe had sustained a traumatic brain injury. This happened from lack of oxygen during birth, they said. The doctors also diagnosed her with mild cerebral palsy and sensory processing disorder. The hospital gave her four different kinds of therapies and wore ankle braces until she turned four. That’s when she aged out of the Children’s Developmental Services Agency (CDSA) program for her special needs.
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. She would line up toys and random objects. But, because she is exceptionally smart and verbal, it wasn’t for another four years before we got her diagnosis of high functioning autism.
Zoe 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 the news and media started addressing mental illness, intellectual and spectrum disorders. 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. This 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. She does not eat solid food. She receives two different therapies and is being evaluated for autism. Nova can still receive therapies through the CDSA since she is only two, 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 these waiting lists are over a year long. In addition, they are in bigger cities over 45 minutes away. With Zoe and Nova’s conditions and the accommodations required, Zoe is home schooled and Nova is unable to go to daycare. Zoe wears a medical ID bracelet with mine and her father’s phone numbers on it at all times. This is in case she runs away when overwhelmed or upset. She and Nova also rock back and forth as a coping mechanism. We replaced a couch and put a metal backing on the new one from it.
My husband is the sole provider for this family of five. My step daughter lives full-time with us as well. I am a stay-at-home mom with a full-time job of caring for my family. We cannot afford to drive 45 minutes away to therapy multiple times a week. We own one car and neither Zoe or Nova receives disability.
I do not seek out help to change my daughters, as 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. I want to 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. The mother or father probably appreciate a kind smile rather than a judgmental stare.
Resources are also a necessity. If Zoe could receive the therapy she needs, she would transition 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. This is 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. I would love to hear about your journey as well. Are you experiencing these same challenges? What has helped you?
For more articles on children with special needs, visit TMoM blogs in this category HERE.
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Hi! My 3 year old daughter happens to have a genetic disorder called Sotos Syndrome. She is amazing, but pretty delayed in all areas. She just aged out of the CDSA last week and our next steps are through the school system here in Davie County. Small town, but she will receive therapies 2-3 times a week at a local
preschool without classroom placement. Your CDSA care coordinator should have set you up before your daughter aged out. Reach out to your school system to see if they offer something similar.
Hello I love to let you know that your not alone we need to keep going stronge because we are the support to help our kids reach the potential.
Also I would like to recommend you filling an application for A BRIDGE TO ACHIEVEMENT they can provide ABA therapy for you daughters and the process for me it’s was super fast and now my daughter it’s doing so much better with her comuncation and they can come to your house.
I hope that can help you!
Keep it strong!!!
Thank you for replying I will definitely check that out! I recently got my older daughter back into speech therapy but and still searching for ABA or CBT therapy in my area. The fact that they can come to your house would be perfect. Thank you again!
My daughter was recently diagnosed with ASD level 3 and has also been having seizures, which we’ll have to introduce medication for. I waited around for so long just to get a diagnosis, so when it came I wasn’t ready to wait around any longer for services. Go to the BCBA website, then directory and then search for registered BCBAs in your area (you can set a radius in miles). This list is short compared to Raleigh, Durham, etc. However, after researching each individual on there, or stalking, whatever you want to call it :), I had some luck with current availability for ABA therapy. Good luck to you! Would be happy to chat anytime.
I am sorry to hear that your daughter has to go through so much. It is so hard being a parent and watching your children go through things out of your control. I think it’s so important to let it empower you to advocate for them not let it get you down, which is what it sounds like your doing!I will definitely check that out thank you for letting me know. I hope everything works out for your family. It is so nice to hear all the positive comments and support. Being able to talk to people who understand is so therapeutic and helpful. Thank you again for your comment.
Dear Christina, I have known you from the time you were born and living in CT. I love and respect you and your husband every time I either see you or hear from your Grandmother what situations you are dealing with, different each day. I hope you get some awareness and programs that Zoe and Nova will benefit from. The progress your little girls have made because of who you are and how you teach and care for them. Your knowledge and continued research on helping them isamazing me. You and your husband are an inspiration to me and all who know you💕 Keep up the search for help and teachings you do every day all day with very little support. I wish we lived closer to you. God Bless you and your family💕
Thank you so much. We do what we can with what we have. They are my inspiration, the things they have overcome and face daily inspire me to do my best. Hopefully we can get some local resources or at least awareness. There are so many children just like mine that I know could benefit from therapy or even just a support group!
Thank you for sharing your story! In this world, it is easy to feel very alone. Most people do not understand the struggles that both parents and the children face. I would love to find a group in which my 2.5 year old would be accepted, and in which I could find friends. Thank you again for sharing!
I agree! It is hard to find people who understand and can share experiences without judgement or criticisms. A group for parents and children would be wonderful.
I truly enjoyed this article. Your story is almost identical to ours. It’s rare that we find other families with similar stories. Even with other special needs families we still struggle to make friends. I’d love to maybe meet in the middle someday and get to know you and your family.
I agree. It can be very hard to make friends and have them understand and be able to relate to what your going through. I would love to be able to create a great support group for the parents and children there’s nothing like that near where I live. It’s nice to hear such nice comments from people who truly understand and relate.