Genesis 1 1:31
In 6 God-Days, He made:
Day 1 – Light and Dark
Day 2 – Water Above (Clouds and rain/ Atmosphere) and Water Below (water on earth)
Day 3 – Sea and Land and all plants and trees on the land, fruit bearing and seed bearing plants.
Day 4 – Seasons, days, years, light in the sky for day – sun – and night – moon and stars.
Day 5 – Sea and all the sea creatures, Sky and all the winged birds and told them to multiply and fill the sea and the sky.
Day 6 – Land animals and told them to multiply and finally Man and Woman and told them to multiply and “supervise” all His creations and take care of it.
Day 7 – He Rested.
He had to rest. He had to take time off to think carefully before he could create His best creation ever: Autism Parents. He had to really get it right because we are a special breed of people.
Autism Parents did NOT get on their knees one day and pray: “Please Lord, I am so happy with what I have at this moment that it makes me feel like I need a challenge.” Or, “Dear Lord, I am really bored with my life, I need a challenge.” Believe me, every day with a child or adult with Autism is a challenge.
I have worked in this field for 15 years now, ever since my son was diagnosed at 4 years of age. As parents it was possibly the worst thing to deal with, the diagnostic process, the looking for answers, the trying to find other parents out there and finding out that although our children all have Autism, my child is not at all like yours and your challenges and struggles are not what I am going through at all. We researched, we asked questions, we read every book we could – not enough in the library at all, but we bought and borrowed. But I soon discovered that I could read and learn as much as I can, but little of it applied to my son. He is a unique piece of Human Art. He is so sweet now but when he was 4 to 5 years old, boy oh boy, he was not a nice child at all to be around. He tested my patience; he got on my very, very last nerve. I just decided I will never give up on him. I would learn and grow with him as I needed to. But I must tell you that every parent I have ever encountered going through the same process as us, find it very hard to cope with. The long diagnostic process, the money spent on therapy and time off work to take your child for all these assessments and therapy sessions. Driving a car with a child who simply refuse to sit in the car seat, strapped in. The screaming, tantrums, melt downs and flailing little bodies. The stubborn children who, when their minds are made up, it stays made up. The trying to puzzle what the ‘communication’ from your child means. WHAT DO YOU WANT???????? UUUUUUuuuurrrrrrrrrggggggggggggg!! I lived in a state of fear and nerves for years. And it became 10 fold more intense when he got sick. Oh Lordy, I went into panic mode, I still do.
The other big problem is being sleep deprived. My son did not want to sleep, he never seemed to get tired. The doctor would not give him something to help him (and us) sleep at night. Some days I drove to work and could not remember how I got there………………..
But my point is, we are not “special parent” like I so often hear from people. The phrase “God only give special children to very special parents” pisses me off totally. I am not a special parent, I am a dead normal mommy who had to come to terms with a very complex disorder and had to sink or swim. I take pride in the fact that I did not sink, I had two years of getting to terms with it and waking up in the morning and thinking, jeeeeeze that was a terrible nightmare just to realise it is real!
From parents I have known in my 15 year journey with Autism Spectrum Disorder I have learned that we need to stand together, we need to rely on each other and ask for help when we need it. It is very difficult to do because for some reason we want to be Super Parents and do it all ourselves, but we get burned out in the process. We cannot let the “ag shame syndrome” get anywhere near us or our children. We need to raise them as normal children and discipline them when they are naughty and love and respect them when they don’t understand the world around them.
We need to grow a thick skin and a tough heart to deal with our children and the (sarcastically) “interested” people. We deal with comments and stares because we have children who look ‘normal’ but behave differently. We suffer from depression and anxiety because our children need to be cared for even when we are not around and we trust no one to do it as well as we can. We live with special education, medication (changes), therapy, homework. We live with a government department for every stage of our child’s development and education and every one of them have their own regulations. SASSA grant or no SASSA grant, SARS claims, doctor’s reports, deciphering what it all means and how it applies to MY child. What is allowed, what decisions I can make for my child. What must I make my child do by himself or what I can do for him without being seen as a controlling, interfering parent. Autism as a disorder is a very interesting but difficult thing to get to grips with, we need to deal with inflexible children, routines, rituals, stimming, sensory over or under stimulations, non-verbal children with their own way of communicating with us that we feel only we can ‘translate’ and understand, their own unique special interest, food preferences that lasts for months or years and can change overnight and with no communication skills to tell you what they need now or why they changed, all of a sudden your child who ate rice krispies for 7 years now only will eat pink yogurt from sun up to sun down. And pink flavoured water from one bottle does not smell the same as another brand. His food ‘yes’ list is getting shorter and the food ‘Hell NO’ list is getting longer.
I am not a single parent with one child only. I have a husband and a daughter, I have other family members living with us and coming and going all day long. 100% of my time and energy cannot go only into my boy, I have to be a wife, mother, aunt, daughter in law and friend to all the other people in my life too. I have to often remind other parents of the fact that although we have a very important job to do to be the major care giver to our children with Autism, we also have to pay special attention to our other family members, and not neglect our spouses. We need to also make a very special effort to be a mom to our other kids, love them equally. They also deserve our time, effort and love, our dedication and all things they are entitled to.
As parents we are never allowed to have a bad day, we need to remain happy and positive, full of energy and keep smiling. We may never get sick. We can never take a day off. We are different to teachers and therapists and even the doctor who are in control of the diagnoses and medication. They see our kids for an appointment or part of the day. Our lives revolve around 24/7 care and love for our children and young adults with Autism. We love them regardless. Autism is not an excuse, it may be the reason………………. We will become the parents who others frown upon and silently fear. We are those creations that God had to sit and think about for a whole God-Day, the 7th day.
I have met all kinds of Autism Parents and never met a BAD parent, never a parent who would not do absolutely anything for their children. The Autism parent will fight to the death to protect their child. We will take you and your opinion DOWN! We are the Grisly Momma and Poppa Bears of the world. We put our big feet in our child’s business at home, school, therapy and everywhere.
We will never stop learning and helping our kids. We are tenacious; we made ourselves strong in mind and soul. We have learned what we are capable of to help our kids. Every now and again, we take a bit of time off to recuperate and get our shit together, but we bounce back fast enough. We are God’s special creations.
We are the 8th Day Creations, the Autism Parents!