This week was the most difficult days in my life I’ve had to face my own reality with Autism. We established additional school for learners with Autism 5 years ago, due to the demand for additional educational service, because the South African Government don’t give a shit about Autism in South Africa.
We established the school to provide for the basic Human Right to Education for all children, not for Kendall but for the rest of the children benefiting from it today. This week the staff individually looked in the eyes and told me “I’m not prepared to work with your child, because of who she is”. Kendall’s unique Autism presents anxiety, self injury, unpredictable challenging behavior and she gets aggressive. We don’t have the answers. We have looked at it in every thinkable way ranging from medication, holistic, therapy to alternative healing methods.
How do you digest the fact that there are nobody who are prepared to love and care for your child other than you. In leaving the school Kendall gave me a hug and a smile, and that’s good enough for me. She don’t have to talk to be able to communicate with me, I know the who’s inside those beautiful blue eyes.
Who other then us as parents will fight for the rights of our children?
I think if Kendall would have a song to communicate her perception on life it would be:
“Hands”
If I could tell the world just one thing
It would be that we’re all OK
And not to worry ’cause worry is wasteful
And useless in times like these
I won’t be made useless
I won’t be idle with despair
I will gather myself around my faith
For light does the darkness most fear
My hands are small, I know
But they’re not yours, they are my own
And I am never broken
Poverty stole your golden shoes
It didn’t steal your laughter
And heartache came to visit me
But I knew it wasn’t ever after
We’ll fight, not out of spite
For someone must stand up for what’s right
‘Cause where there’s a man who has no voice
There ours shall go singing
My hands are small I know
But they’re not yours, they are my own
But they’re not yours, they are my own
I am never broken
In the end only kindness matters
I will get down on my knees, and I will pray
We are God’s eyes
God’s hands
God’s mind
We are God’s eyes
God’s hands
God’s heart
We are God’s eyes
God’s hands
Cazpi says:
Guys there is one thing that is important in this world. YOUR child. It’s unbelievable that a teacher, who went into the field because it was a calling, their love for children, and their need to help, has had such a ridiculous reaction. I am quite sure that I am not the only teacher APPALLED by this. Not the only mother either. While my situation is not anything like yours, I can absolutely understand your frustration, and heartache. I think being on both sides helps give me perspective a bit, but I still cannot say enough – what has the teacher tried to do to help the situation, bar give up? Don’t give up on the goodness of people, the wonderful children you have, and the meaning that is today.
21st March 2010 at 11:26 am
Gerhard Pieterse aka jail4bail says:
Cazpi, It’s not about a a teacher, a school or a individual family. The issue is much bigger than this example. It’s about gross violation of Human Rights of children with disability in South Africa by the South African Government. Parents would not be in this position if Government work in partnership with the NPO sector. The NPO sector take the responsibility of Government and save Government millions of ZAR every year. Government blatantly violate the Constitution of South Africa in the Bill of Rights which includes 1.1 Rights, 1.3 Equality, 1.4 Human Dignity, 1.21 Healthcare, food, water and social security, 1.22 Children, 1.23 Education.
Most families accept their responsibility, giving up the struggle to fight for their Constitutional Rights with the understanding that if The South African Government cannot even acknowledge the existence of World Autism Awareness Day (sanctioned by the UN), why would they start acknowledging the rights of 1% of our population of peeps with Autism.
Even the peeps with Autism who fo have the ability to represent themselves don’t even take up the fight in South Africa. Everybody is sitting back waiting for nothing to happen. We try our little bit to change it, and will never give up ensuring the future of Individual With Autism in SA.
21st March 2010 at 12:53 pm
brottonlass says:
For me it is about the constant ostrcism. There should be Government support to provide facilities! I also wish other parents would stand up for their childrens rights instead of sitting back. It is the worst feeling in the world to see your child constantly rejected.
21st March 2010 at 8:51 am
Gerhard Pieterse aka jail4bail says:
@brottonlass “Patience can cook a stone” – African Proverb, seems to be the the general approach of most parents. Parents are not prepared to fight because they are not convinced that they can actually win the war. We have picked some battles lost horribly, but also won some battles. Pick your battles.
21st March 2010 at 9:48 am
brottonlass says:
patience is something I don’t have. Fight to the bitter end I will!
21st March 2010 at 12:10 pm
Momcat says:
My boys have ADD and I am still fighting for the youngest to get through school. Lack of understanding by some teachers has me tearing my hair out in frustration but their attitude quite often comes from the top where the education department does not take into account any form of learning disability. My 20 yo old failed every year of high school and eventually left after doing a year in grade 10. His highest pass was grade 7. He is intelligent and picks up knowledge very easily if it is visual. Unfortunately the ‘academic’ schools which are so often our only option only offer verbal and written tasks and that is instant switch off for my boys even with medication. My oldest son is doing well at the moment as a trainee adventure instructor. My youngest is in grade 8 and I am repeating history with him at the moment. I am actually so tired of school and trying to educate the teachers who dont seem to have any idea of how to handle the kids with problems. The curriculum is a god who must be obeyed no matter how many children have to be sacrificed to it.
21st March 2010 at 12:26 pm
Gerhard Pieterse aka jail4bail says:
Dear Momcat,
The educational system in SA don’t allow much space for creative interpretation to educate our children based on their unique and individual way of learning and understanding. It’s pretty much a take it or leave it situation. Not all children learn in the same way. I would speculate that’s one of the reasons why home schooling will increase significantly in the future. It’s our duty as parents to take the battle up with Department of Education, to ensure & insist on the future of our children.
21st March 2010 at 1:30 pm
Sharon says:
It makes me so sad reading this. My child is “normal” and I don’t have any of these problems. But I have a friend who has a cerebral palsy child & she cannot get him into any institution because none will accept him. How can they refuse a child education? It makes me even more determined to continue with my work & support of a school in Pretoria for severely disabled kids – who otherwise would be sitting in some dark forgotten corner somewhere and left for dead.
21st March 2010 at 9:03 am
kambabe says:
OMG that is probably the sasest thing I have ever read how someone who trained to become a teacher and provide education to children can turn around and say I’m not prepared to do this because its difficult is beyond me. I love your spirit and the manner in which you love your child unconditionally. It is inspiring and uplifting. Kendall is entitled to and education as much as any other child and its part of the human rights charter to refuse her her basic right of education is a horrific injustice
21st March 2010 at 9:09 am
Gerhard Pieterse aka jail4bail says:
I have learned nobody will ever love, care, appreciate your child as much as you do, even when faced with some challenges like Autism. It’s our responsibility as parents, to provide what’s best for our children! (Yes I know, what’s your point?) The point is this, sometimes when you don’t know how to provide this for you own child you are forced to revert to specialist support, at any cost, only to be disappointed in assuming that specialist really cares.
You become an case study, subject, account which spirals in to a cycle of opinions, tests & possibilities based on theory and text book knowledge. Nobody knows or understands the uniqueness of your child better than you, however you are considered as “only a parent” with minimal input.
It’s like “i’m the professional, I know what I’m doing, just look at the experience I have, however in this case study you are own your own with the said subject”
We have been living that cycle for the last 10 years, however when you do get a hug, a kiss, some interaction, a giggle, a tapping hand on your leg, some eye contact from those beautiful blue eyes, you know it’s an acknowledgment of all your efforts and appreciation of you unconditional love.
21st March 2010 at 9:44 am