Autism awareness and acceptance -Jaki Mathaga

A friend recently reminded me of her first encounter with me. We were having a parent training session on autism, about how to continue the learning process at home. The discussion diverted to autism acceptance as the key to seeing change in your child, when she remembered what I was like 5 years ago. She says I looked at her and declared, “I don’t want to hear that word (Autism), my child is “normal” and no one should say otherwise.”

Looking back, I now understand that I was more offended by the word “normal” than the word Autism. My fight from the very beginning has been for my son to be seen as equal to other children even though he has a different way of ordering his world.

My fight has been against the referencing of other children as normal and mine as not. He has 10 fingers and 10 toes, all his bits and parts work well. He has every organ and limb in place. He has a brain. His brain processes information, just not in the same way some other brains do.

World Autism awareness day and month is here. All of April is used to bring awareness to Autism. April 2nd is the globally recognized World Autism Awareness day.

I started thinking about this day and was reflecting on how my son has come a long long way in 5 short years. I have too. I would like to think that we are both not the mother and son we were back then.

In trying to figure out the autism puzzle, I have figured out so many things about myself and in seeing the quality of his life improve, I have felt re-energized to do more; not only for him but for other moms and kids with the same struggles.

So, as we mark this most important day, the World Autism Awareness day, I want to push the word normal out of the way because it still offends me and instead focus on Celebrating the difference that Autism is.

One of the characteristics of persons with autism…and I say one because they are many and different and an individual may have different combinations of the characteristics while another has a different combination, that is why it’s a spectrum; well one of the characteristics of persons with autism is repetitive behaviors or a fascination or obsession with a single topic or item. My son has a love for the yellow school bus. I know it’s a strange one because we live in Kenya and where oh where are there yellow school buses in this country? It started with his love for the song, “the wheels of the bus”…you know the one…sing with me.

“The wheels on the bus go round and round,
round and round,
round and round.
The wheels on the bus go round and round,
all through the town.”

From when he was a baby, being in the car would sooth him and so before I figured out what was triggering his meltdowns, we would get into the car and just drive. As he grew older being in a school van or in the car with me brought him happiness and then we got an iPad as a gift and my child discovered the magic land of you tube videos.

Did you know that there are more than a hundred versions to that song? I am not talking about the song being sang in a different language but the same song sang with different lyrics added, different colored buses etc. There are games based on the song and get this, you can teach the alphabet or math or science with the wheels of the bus as your focus.

The point I am laboring to make is that whatever item your child is focused on can be used as the starting point for learning. Here’s an example…

English: B is for bus, spell bus, who goes into the bus? Spell baby, mom, dad. Who drives the bus? Spell driver. What uniform does the bus driver wear? Spell uniform. What color is the bus?

Maths: How many wheels does a bus have? Count 1 to 4. How many windows? Count 1-10. If the bus loses one wheel how many remain?

Get the idea? We know that we are likely to pay attention to someone trying to have a discussion with us when the topic in question is something that we like or are deeply interested in, the same applies to your child’s learning.

One of the things I am doing at the moment is trying to figure out careers for my child. He may have a different idea when he is grown but as his parent, it is my responsibility to get him ready for the future. These are my top 3:

1. Engineer- I mean we have barely started discussing the ins and outs of how a bus runs, the machine or machines that are needed to manufacture the bus or make the bus run.

2. A bus dealership owner- people will still need safe school buses in the future and someone with a love for buses could customize some really cool ones. I think vehicle sales earn dealership owners a lot of money.

3. Auto Mechanic – I see how much money I pay my mechanic and so I therefore do not sneeze at this JD anymore. If school buses exist then someone needs to fix them when they break down.

We spend so much time as parents of children with autism agonizing about our children’s future and getting really distressed about it. We spend so much time looking across the fence at either the autistic child’s siblings or his cousins or little neighbors and wishing our child was like them, neuro-typical. As we get to April I want to urge you to try the following;

1. Remember: If your child is older, think back to that first day you got the diagnosis and take a minute to celebrate the person you have become today. Come on now – make yourself a cup of tea, pour some wine or get yourself a bar of chocolate. Whatever your fix, do it to really celebrate you and thank God for how far He has brought you.

2. Accept: If you are a parent of a newly diagnosed child, take a moment too. Know that a year down the line things will be different. Focus on one behavior or autism characteristic at a time and help your child become the best version of themselves one day at a time. The diagnosis is in. Autism has been declared. Determine to move forward. Accept the child you have.

3. Commit: Identify a characteristic of your child’s autism that could become his career path. We want our children to be able to fend for ourselves and some children may never grow up to be completely independent but refuse to fall into the trap of thinking your child can do nothing. Your child can do something. If your child likes colors, what career do you think that points to- from lowest to most complicated, what could he or she do with colors? Commit to get them there.

4. Learn: Start including their likes or focus or obsessions into the learning process. Ask his teachers or other care givers to help. Google is your friends. The resources and ideas available are countless. You will learn so much and so will your child as you work with them.

5. Celebrate your child’s achievements one at a time. If you look at your child’s progress for an entire year, you may feel discouraged and tempted to think they have not achieved much. If your child is not on the higher end of the spectrum, there may be no school reports that say how brilliant he or she is.

So, I urge you to look for the brilliance. One day my family was gathered for a meal and I randomly said to my son, clear the table. I did not mean it, I just said it sort of wishfully. To my and everyone’s utter shock, he started picking plates and taking them to the kitchen. They were literally thrown into the sink and in the midst of my horror at the crashing dishes and the breakage that ensued, I had enough presence of mind to stand and do a jig and celebrate him when he walked back into the room. Plates can be bought.

Affirming your child in the moment is not something you can re-do. Once the moment is gone, it is gone.

So now my son is once in while asked as a matter of fact to clear the table and be gentle while putting them in the sink. Next project- dish washing… see where I am going with this?

6. Journal: Write a wish list of things you would like your child to be able to do. Critically look at the list and truthfully see what you can immediately start working on (quick wins) and what may take longer or may never be achieved.

Pray over your list. Start working with your child a little at a time. By writing down where you are with things, you can go back a month, a year, a decade later and see clearly how far you have come. You will see reflected in those pages not only the progress your child has made, but you will see the how different you have become. Celebrate that.

If you are reading this and know someone with autism, I would ask you to never ever use the word normal in their presence or in the presence of their loved ones.

I would instead like to introduce the word neuro-typical while referring to children without autism. We live in a very neuro-diverse world…. Yes, neurological diversity is a thing.

A lot of interviews I have listened to where the interviewee is a person with autism suggest that they are ok with their autistic selves. They, like everyone else just want to be treated like human beings and respected and accepted despite their differences.

Affirm the parent you see working hard with their children and remind them of your love and God’s love for them.

One more thing… Wear BLUE through April to show your support for those with autism. If you can, ask your workplace to Light it UP Blue for a day or the entire month of April. Donate to an autism related cause.

Happy Autism Acceptance Month