ADVOCATING FOR MY CHILD Our journey into a dark tunnel with autism and how we made it out
Written by Maria Kaine
When I found out I was pregnant for my son at forty-seven, I was not excited. Our nest was complete, and I was no longer at the optimal age. Aborting was not an option and so I asked God for a daughter that would be so easy to cater for and not give us much stress.
I gave birth to a wonderful son, and as I believed initially, the second part of the prayer had been granted. The first 2 years were so easy going. My son hardly cried, he was dry before age 2, was already saying some words and you didn`t have to put things out of his reach. I could leave him in the nursery school or with friends without any issues.
But as it is when you enter a tunnel, initially you still see some light and it takes some time to realize that you will be confronted with darkness. My son gradually used less words and then stopped altogether. He did not want to go to Kindergarten or be left with anyone and would cry incessantly. He hardly took interest in his environment and he started rowing up his toys. At Kindergarten he would hide under a table or blanket almost the whole time, he started making repeated movements and flapping his hands. The word I was dreading was dropped in the Kindergarten - AUTISM.
What followed was a sequel of tests at the hospital. Eventually I was told, "your son has autism, he is mentally handicapped and might never develop mentally more than a 2-year-old child, would probably never talk". The doctor handed me a pamphlet, so I could get in touch with organizations that cater for parents of such children.
I was devastated, this wasn`t what I asked God for! I went into prayer, ranging from pleading, anger, apologizing to God for being ungrateful. I would cry myself to sleep. I blamed myself for getting pregnant at that age. For some time, I went into denial. I started using every excuse to leave home - work, church, meetings. I stopped taking the other kids out because I did not want it to be obvious that I was leaving him behind. I dreaded the back lash and sniggering of the African community.
I really feel ashamed about it, but I want to be candid in this article.
Thank God! this period did not last too long, though every day was a day too many. I pleaded with God for forgiveness and vowed to be the best mother for my son and to do all in my power to give him the best and then I set to work, spending as much time with him as possible and giving him all my love.
As soon as the Kindergarten got the results from the hospital, they wanted my son changed to a special needs Kindergarten, but I resisted and requested that he gets an integration helper who would come to the Kindergarten and help him integrate. They accepted and I didn´t have any more issues with them, however when he had to be tested to determine if he had the competences needed for school, it was a disaster. My son was nonverbal and could not answer a single question. He also did not understand much. So, we had to do another test and despite all my efforts my son was sent to the special needs school. I tried everything to get that decision changed, the test was done at age 4 plus, but he was developing and starting to say a few words. I had spent allot of time teaching him and working with different educational toys with him and I realized that my son was perhaps not talking but there was allot more in him than he was showing. I also tried all private schools, but every school rejected my son.
Regrettably, the headmistress of the special needs school misrepresented the school to us in a bid to gain a new pupil. The school assured me that they follow the regular syllables where possible and that they would sit down at regular intervals with the parents to determine the work plan for the child. None of this happened! I was told that it was a class with children with physical handicaps mostly, that also was not correct. The whole year was spent on two alphabets and the numbers 1 and 2. The school was also very opposed to parents' critics. Despite my requests, I was only able to have one parent-teacher meeting and that was to criticize my insistence on my son being taught more!
I was always determined to give my son equal opportunity to learn and so I had all the workbooks from the regular primary school at home and I tutored him at home. We would spend like 1 hour every day and 2 hours on the weekends. I never missed out on my sessions, except when necessary. At this time, my son was 6 and gradually transiting to being verbal, though his speech was not as developed as children of his age.
As soon as I realized that the special needs school was not interested in my son's development, I quickly approached them and the regular school to have my son put on a regular school in the next academic year. Prior to that I had been assured by the special needs school that they would support me in the school change, but the reverse was the case. They kicked against it! I was told that I needed to apply to the Schulamt and a Schul- Bildungsweg-Konferenz would be required to determine if my son was eligible for a school change.
To equip myself for this conference I got a doctor to test my son`s IQ and this time he had an IQ in a normal range and the doctor wrote a recommendation that he be put on a regular school. I also had the workbooks that we used at home to show my sons abilities.
At the end of the conference the official from the Schulamt had to admit to me that she had never had such a challenging and unpleasant conference in over 20 years. The headmistress from the special needs school and my son`s teacher got rather nasty. It was obvious that they believed it was a closed case. Despite all my arguments the Schulamt still was not inclined to grant my request, raising issues like the possibility of my son being mobbed and that he wouldn't cope in a large class. Eventually I just pleaded with her to give my son a chance. I and my son had worked so hard for this, and even worse than overchallenging a child was to underchallenge the child. I wasn´t a teacher or an expert but a mother wanting the best for her child. I guess that was what moved her to change her mind and my request was granted.
It was another battle to get all the tests done to enable my son get a Schulbegleiter/ integration helper on the regular school. The Hospital went on to do an IQ test on the request of the Jugendamt without my knowledge or consent, since the believed the doctors result, I bought was probably not authentic. This was 6 months after his doctor had tested him and surprisingly the test showed that my son had an above average IQ. The primary school was very skeptical but had no option, but to admit him but after 2 weeks they advised me to remove him. Luckily he was able to get an integration helper/ Schulbegleiter after 6 weeks and the story turned around.
My son is currently in the second class and is doing extremely well. He is academically somewhat underchallenge but because of his emotional wellbeing it is also okay that way since autism also comes with other challenges.
We owe it all to God. I do not want to assert that when a parent puts in effort it always ends with very positive results, but it certainly goes a long way. I think what helped me is that I always took small steps and was grateful over every little progress. I read extensively about autism and I tried various methods of teaching with different educational toys. I spent allot of time cracking my head what method was best to teach a particular topic and I tried making it fun and with allot of praise. Consistency is also very important.
My biggest stumbling block was the fact that this society just assumes that as a black woman you do not know what is good for your child and that you are not competent to have an opinion. Also, there is not much professional help for autistic children and hardly any schools that cater for their specific needs.
At the end of the tunnel is always light, you just must keep the faith and move towards the light.