Today, I want to reflect on the year that has passed. It has been a tough one indeed. I think everyone thought it would be the year of getting back to normal after the pandemic. However, what ensued was a year of insanity. I have never seen a year where so many humans have pushed so hard or have been pushed. Everyone I know is at breaking point. I see desperation in so many faces. I feel sadness welling from so many hearts. I can relate. We as a family had our own challenges. May I say, it’s been the most challenging year. My mom is stretched so thin. I’m grateful for all she does for me. Especially for the education centre I’m in. I see how she supports it so I can fulfil my destiny. I’m eternally grateful to her. I hope 2023 will be a better year for humanity.
In the end, we have to be comfortable with the choices we make. I recently had the situation where my actions were misunderstood. I certainly have a silly body that does silly things, but this was extreme. I was doing embarrassing things around my twin sister. I’m sure it was terrible for her, but it was no fun for me either. Now I have to tell you that my twin and I had always had a super close relationship. After you’ve shared a womb its hard not to be well bounded. I was feeling distance between us, and I hated it. I wanted to fix it but it’s hard to do it when you can’t talk. I found this anxiety about our relationship seeping out as embarrassing behaviour around her.
Can you imagine how it felt to be doing these things knowing she was hating me more every time I did them. It was excruciating, I can tell you. But luckily, Mummy, Tracy and I had a chat and figured out what was going on. I had insight into my terrible behaviour, and it brought such relief. I now know what was going on and I could fix it. So, we set up a meeting with my twin and me. We both had an opportunity to say our side. Others may have thought we fixed it too quickly. I disagree. We just reminded each other who we are. We have shared a whole life, so we just needed a reminder to fix it. I am so grateful. I need her so much. She is the other part of my soul.
I think we need to choose to fight for the important relationships in our lives. They are what makes life worth living.
Today I will discuss something close to my heart. I want to stand in the place of other nonspeakers and advocate for them.
Have you ever seen a nonspeaker who hasn’t found their voice? I have. They are so lost and helpless. I feel their pain so much.
You see, I was once there too. I had a head full of brains and thoughts and ideas. I had emotions and feelings about everything I saw and heard. I wanted to say something in every situation, but I couldn’t. I had no way to communicate. You cannot imagine how that feels. At first you are hopeful but then despair sets in. You start to realise that no one has seen you. You see that the people around you have lost hope too. They are starting to believe what the professionals are telling them. They see your intelligence but get brainwashed into believing the professionals. They hear so often that you are low functioning that they doubt themselves.
So they believe them.
The worst part is hearing yourself described in this way. It breaks your heart in so many ways. All you want is to be seen for who you are. For someone to say “hey, I see you there in your dyspraxic body”.
My story is a happy one. I found that person. Tracy saw me immediately and started to help me out of my prison. I am forever grateful that Mommy brought me to her.
But many are not so lucky. They are stuck in schools that treat them as low functioning. They have doctors say that they are too stupid to learn. They are stuck in prisons of hell. My heart breaks for them. My soul screams with theirs.
“See me”.
“Save me”.
“Help me”.
We need to find them and liberate them from their dyspraxic bodies.
I’m sorry it’s been so long since my last blog. I’ve been learning to use the keyboard. It takes a long time to learn a new skill when you have a really silly body. Throw in a pandemic and a family crisis and you’ll understand the delay.
I think this has been a tough time for many people, especially non speaking autistics. We are extra sensitive to changes in the world.
(large tears were rolling down Akha’s face and landing on his t-shirt.
T: What’s going on?
A: I’m emotional because it’s wonderful to talk and be heard and appreciated. You are so good to me Tracy.
T: I’m the lucky one. Do you want to leave that in your blog or keep it private?
A: Leave it in.)
I feel the anxiety of those around me. I feel it like it’s my own emotion. I need the people I love to be open to letting me into their emotions instead of trying to hide them. Everyone tries to be strong for me but that is not what I need. I need to feel real emotions not fake ones. They hurt me. I need you to trust me with your emotions.
Trust your autistic loved one with your emotions. Tell them how you feel and why. Let them carry your feelings in their hearts. They will love you more for it and they will never betray your confidence. Don’t worry – they can’t even if they wanted to! Make the most of your special relationship with your non speaker.
Early on Christmas morning there was a noise outside. Peter was sleeping when the noise awakened him. He went outside to see what had caused it. There he found a yellow mask made of wood. He put the mask on and suddenly everything changed.
You see, Peter was a non-speaking autistic and he had a silly body. When he put the mask on, he was immediately in control of his body. Suddenly he could talk and do anything with his body that he wanted to. He was so excited. It was a Christmas miracle.
He ran inside to tell his mother what had happened. But when he got inside, he found his family gone. He called and he called but they weren’t there. He went out into the street to look for them. He walked through the streets of his town to find them. They were nowhere to be found. In fact, the whole town was deserted, not a person in sight. He was frightened. He did not know what to do.
Suddenly he saw another person. It was a young girl and she looked as scared as him. She was also a non-speaking autistic. She was now also in charge of her body. She was also now alone. Peter and the girl now had each other. They walked around hand in hand looking for their families. They found other children who were also non-speaking autistics. Every one of them was alone. They were confused. They were scared.
“I think we’re alone now” said Peter. “We are in control now, but we are without the people that we love most. That is not the life that I want.”
“Me neither” said the girl. Everyone agreed.
“I will take the mask off now” said Peter. “I will be proudly autistic. I was made like this for a reason. I must fulfil my destiny.”
He pulled the mask off and everything returned to normal. Peter went on to live his life to the full. Never again did he wish to be neurotypical.
Today I want to talk about making friends. I think many
parents feel they need to put their autistic children in a school so they can
socialise. Although this seems like a good idea it’s not how it works. Being
around other kids doesn’t make you friends. Being near each other doesn’t build
relationships. Because communication builds relationships, not proximity. My
wonderful speech therapist Tracy noticed how lonely I was. I was surrounded by
kids but I didn’t have one friend. In fact many of the kids were mean to me.
Because I didn’t speak they thought I was stupid. They mocked me and called me
names. Even when Tracy came in and I spoke to them on the boards, things didn’t
change. I was then homeschooled for a while. Then I met Thabi. My whole life
changed. I finally had a friend. Tracy facilitated conversations between us. I
learned we liked the same TV programs. I have discovered we like similar food
but I eat his tomatoes and he eats my crackers. We sit together and watch
movies. He stood up for me when someone was unfair to me. I love him so much.
There’s nothing quite like having a friend. I wish every autistic person could
have one wonderful friend like mine.
Today I am going to talk about how I give affection. When you live in an uncontrollable body, it’s hard to show affection to those you love. It’s hard when you love people so fiercely, but you can’t show it. You take it for granted that you can just tell someone that you love them or give them a hug. I can’t do either. My silly body doesn’t allow me to do either of these things.
I have to be creative to show my love. I have thought of different ways to do this. I like to look into other people eyes intently so they can see I’m in here. I like to touch those I love gently on the face. I squeeze my chin into their arms and legs. I place my head against their bodies and leave it there.
I know they are not the conventional ways of showing affection, but they are all I have. Please accept them from me.
Since I have my voice on the letterboards it’s much easier. I can now tell people that I love them and how much they mean to me. Communication is key to relationships.
Today I want
to talk about my education. My wonderful mother has always fought for an equal
education for me. Even when I was small, I went to mainstream preschools.
We did ABA
(applied behaviour analysis) for a short time before we worked out how terrible
it is. Autism can’t be cured, and you can’t train us like dogs. What the ABA
people are missing is that autism is neurological and that we are whole people
with no pieces missing. They presume incompetence.
My education
presumes competence. My teacher knows how smart I am and provides an age
appropriate education to me. It started with me being home schooled by the
world’s best teacher, Nicola. We used to work at my house, but I was very
lonely. Before it became unbearable my wonderful Mother and Tracy came up with
a plan. There was another boy who needed a new school and I needed a friend. So
we started a home schooling consortium. We are doing age appropriate education
and other activities. We are respected and loved for who we are. We are
understood and stimulated mentally.
My wish is
that all non-speaking autistics have an education like mine. I wish I could
free them from their terrible schools where they are treated like babies. They
are heavy on my heart.
Akha Khumalo: In My Own Words 