My Autism Story – Esther Wairimu Hezekiah

What is your name?

Esther Wairimu Hezekiah

How old is your child?

He is 14 years old.

When did you discover your child was autistic?

I found out when he was 3 years old, but by the time he got to two years, I could see something wasn’t “right”.

How has your autism journey been?

It has been a rollercoaster kind of journey! Before we discovered about autism, we thought he was behaving the way he was because he had no siblings or kids his age to copy or show him how to behave. So, at the age of 2 and a half, we took him to school. We also went from hospital to hospital trying to figure out what was wrong with our son. A friend of ours then told us about this doctor who upon checking our son told us he had ADHD, and get this, had to put him on medication to “calm” him as he was super hyper. The doctor then sent us for tests and that’s when I heard about autism for the first time. At this time he was almost 4. We started with a special school, which I agreed to (shingo upande) after my parents talked me into it. This school was a boarding school. I couldn’t imagine taking my son to a boarding school at the age of 4 and a half. It was devastating leaving him there, and I used to cry almost every night wondering if he was okay. I used to break the rules and just show up at the school without warning, and the owner and the teachers must have thought I was crazy! I thank God that it is at this school I heard about therapy and diets, and within 7 months, they had stopped giving him the daily dose of Rivotril, and I noticed he was calm. But one day I couldn’t take it anymore – I went there and I called my husband crying and said we have to bring our son home! We took him back to school (normal school) and looked up therapy hospices elsewhere. We were lucky to find out about Therapies for Kids, where we did our therapy four times a week.

There have been days when I have forgotten about him for a minute, and he is gone, elopement!!! He has eloped so many times and I would cry my eyes out looking for him! One time he got lost around bus station, in town! Just that morning, we had taken a photo, and I walked around crying in the middle of town asking anyone about him showing his photo to those who cared, and after about 2hours, a lady said, “Mum ebu nione hiyo picha,” then she said, “nimemuona kwa video game.” When I saw him, I wailed!!!! And nikamchuna kwa cheek😬. He wasn’t potty trained till age 6, but he was always clean😎. His speech became coherent at the age of 7-8 thereabouts, and to date, I thank God that he can have a conversation with just anyone. He still stims, but we just say, “Trevor Yuko pull up,” as he can recite a whole conversation or his favorite TV shows, or PlayStation. He loves gadgets and phones. He’s our little technician.

How has autism affected your life on a day to day basis?

Well, we don’t just visit anyone, and I have had to drop friends due to their judgmental looks especially when he’s stimming, or being incoherent. We have had to change our home diet to accommodate him. We can’t just take him to any school. We have to be on call 24/7, whether he’s in school or at home. We can’t just have any house help, as the first thing I do is talk to her about autism. Some spend one night and in the morning “poof!” they literally run away! He used to elope, and being in town or a new environment was really hard. The beauty of it all is that I can run my mouth when it comes to my son, and I let neighbors and friends know about him so I can breathe when he’s outside. Nowadays it’s not as hard as he doesn’t elope any more.

Do you do any kind of therapy? What are the costs like? Is the therapy helpful?

Therapy became too expensive for us, so we opted to do it at home. I watched what the professionals were doing, and I would follow it up at home. When the finances couldn’t manage therapy anymore, we did it at home. Google also helps a lot.

How about school? Is your child in school? What is the experience like for you and your child? If your child is not in school, how do you keep him/her engaged?

He’s in an integrated school. His teachers are wonderful and accommodating, whatever he doesn’t grasp, we ask for a little time for him to understand. He loves school but doesn’t like the high concentration and intensity put into studying. We just sail through and concentrate on what he loves – computers and English, and a little bit of maths. His worst subject is Kiswahili!!! It’s sometimes frustrating for us because we can’t just pick a school and decide it is OKAY, it has to be OKAY for him. A certain school just woke up one day and decided “hawataki hawa watoto” 🙄🙄🙄, and just like that, we were home.

What keeps you going and not giving up?

The love I have for my boy, this love makes me forget sometimes the ups and downs of autism. He’s so loving and genuine, he’ll even tell the dad off when we aren’t in his good books. He’s very caring towards his siblings, and the fact that he’s who he is, and he doesn’t give a hoot what we or the society think of him. He loves hugging, and makes friends very fast, maybe because kids wonder “huyu kijana wa majuu ako juu” (he has a British accent)! The fact that I see a future in my son keeps me going, and knowing that in his own beautiful world, he’s perfect 👌.

Do you practise self-care? Do you ever get a chance to recharge?

Not always, but once in a while I literally run away from them and just take a walk, or hook up with some friends and just laugh away…over a drink.

What advice would you give parents of special needs children?

Don’t rush to try and change your child. Get into their world and know how it’s like, and walk hand in hand from there. Take good care of yourself, so even when it’s hard, you sail through. Pray, pray, pray. Get to know your child’s capabilities, and work on that.

What advice would you give a parent who is scared of getting their child checked for autism?

Knowing what it is makes it easier to get the help that you need, so go for it.

What words of encouragement would you give a parent who has just gotten the news that their child has autism?

It gets better, it will be bumpy, but it gets better. We have good, and not-so-good days. Taking one day at a time keeps you going, learn, learn, and learn some more. Speak out loud and clear about it. Find groups of special needs parents, join, and ask as many questions as possible. Remember, yes, your child might be autistic, but it just means that they are abled differently.

What quote or Bible verse keeps you going?

Habakkuk 2, Jeremiah 11, and Isaiah 65