07 Sep The Monster Under my Bed

Being a parent automatically begets you the worrier tag. Being a special needs parent on the other hand… the intensity is amplified. The joys are pretty high while the lows are dreadfully low. At least it’s been for me. I worry. A lot. I am confident that I am raising my daughters the best way I know how. I go with what is right for them now and in the future. I go with what worked for me and righting what did not. I also take cues from them. My first child is Autistic, I had her in my mid-twenties and I did not have a manual on how to be a Mom, nor did I think I needed one. Her birth story is different from her little sister’s. I almost lost her. It’s not every day you get to see your child pulled out during your emergency surgery…all blue. I still have that memory in my mind crisp clear, seven years later. And it is for this reason that I dedicated my life to caring for her. It has been a journey since she got diagnosed with Autism when she was two and a half. That year was a confusing one for me. I couldn’t wrap my mind around the fact that I had a special needs child. My worry levels drastically shot up, I stressed over every single item in the present and unforeseen-able future. I honestly didn’t know what to do or even how to handle it all. But God.

Research is such an underrated phenomenon. Research saves lives! Hehe. As much as Dr. Google has ‘ended lives’, it has saved a lot of lives. I fall in the latter category. I owe my vast Autism knowledge to Google, Autism support groups, and fellow Autism parents. Talking with other parents who intimately know and understand where I come from has been the most fulfilling…A sense of belonging. My first fear was how the world would interact and treat my child. She joined school when she was 4 years old, not yet verbal. I had to go to school with her, every day, for one and a half months because she was the first Autistic student and no one knew how to communicate with her or how to get her to take instructions and whatnot. I cried on several occasions seeing how hard she worked and was committed. By the time I stopped going to school with her; she had fallen into an easy rapport with the teachers, staff, and other students. It was beautiful. The entire school population had Autism awareness and more importantly, other Autistic and special needs children were admitted. That was growth!

School aside, the other human population is largely ignorant of Autism. “Why is she not talking?” I always have to explain. It always goes down well because I took it upon myself to raise the awareness but there’s this other group who are always quick to offer unsolicited and unmerited advice on why she is the way she is. Listen, keep that to yourself! I have not complained that she is too much for me nor did I ask for your negativity…just stop! For us to get to the point where we are proud of our situation and publicly speak out about it, we have dealt with a lot of self-doubt and at one point thought we did this to our children. Have some compassion. Ask how you may be of help or what you can do. Sometimes it’s as simple as that. I for one will ask you to do more research, let’s kick this ignorance to the curb. Not enough people know or understand about Autism yet we have Autistic persons with us in society.

We live in scary times. It is especially a trying time for the girl child. A high number of child defilement is always perpetrated by family members, neighbors, and people within the community. Most of the girls speak up and due diligence is done. For special needs children, chances of them being abuse victims is usually four times higher especially for the deaf, blind, Autistic, Cerebral Palsy, and the physically impaired. The perpetrators rely on the fact that these children cannot verbally report them. It is very heart-breaking that children go through such trauma. Aggravating. This is my greatest fear. I do not let my daughter out of my sight whenever she is with me. I am never at rest knowing I cannot see where she is or with whom. I have prayed over it and asked God to take over this fear, yet, I still check on her all the time because humans. He does not bring harm to His children but because we are in a world permeated with sin, such horrendous acts happen.

Raising my daughter has become a full-time job, I am her earthly protector and I take my job seriously. I am lucky I have been able to work from home, this puts me more at ease because I do not believe I would ever forgive myself if something life-altering happened to her. Not that she has remained unscathed, I am only human. She once fell into a manhole while playing with other children, I have walked in on a boy, around 10 years old, groping her. In both instances, I had turned away for less than 5 minutes.  These instances reinforced my need to hover. I do not trust children and adults alike. It’s not just human monsters I need to watch out for, there are children versions too!

Pray for and be a positive energy to any special needs parent. Some of us are drowning in the intensity of it all capped with serious meltdowns brought on by frustration at not communicating while dealing with societal judgment at having ‘an undisciplined child’. People need to relax and let these children be, also it is not your place to offer and enforce discipline tactics. They need love and acceptance more than punishment. It is not easy for them or us, their parents. We may make it look like so, but it is not. It’s so not.