My Autism Awareness Month – One Year Later

One year since the diagnosis…one year of learning more about God and how He works in our lives…

He laughed jovially as she made faces at him. He ran around happily as she did her chores. No words. Just laughter. He was such a happy baby, growing well and achieving all his milestones. His first word was ‘auntie.’

Then his words disappeared. He was no longer saying auntie or any of the other words he had learnt. By this time he was just getting to 3 years old, and it was time to start playschool.

The first school was a disaster. Poor guy could not handle it. So he moved.

Wait – let’s call the little guy JJ.

JJ loved his new school – there was much to keep him busy; a lovely playground, a wide variety of toys and lots of storybooks. It was fun to go to school. But there were still a couple of problems. He was not yet toilet trained, and he was not speaking.

The first year passed, and JJ still could not stand the sight of a potty or a toilet. After much persistence on Mom’s part, though, he finally got the hang of it. Meanwhile, a few more words came out of his mouth. Not as many as his peers were saying, but, yes, they were still words. Mom and Dad were encouraged.

Because he was a little behind his agemates, however, he was not coping well in school. The sight of a pencil would make him scream. Little JJ knew that there was something that everyone else could do that he couldn’t do, so he reacted in frustration.

The school year ended, and the report card came home. Mom looked at it, cried, and put it away. The remarks were devastating.

On the social front, people around her and her family had started staring and giving funny looks when they went out to a public place and he acted up. He hated new places, crowds, strangers, loud noises and disruptions to his schedule.

Mom decided to get help. Time was running out – JJ was almost 5 years old. His time in kindergarten was almost up, and soon he would not be able to get the attention he needed.

In all this confusion and uncertainty, Mom’s faith was tested more than once. Why would the Lord give her this challenge, yet she had prayed so earnestly for a child? Why would God give two people who had devoted their lives to serving Him faithfully a child with challenges?

Then the Lord reminded her, “This child is a gift from me. A gift that will make you grow in your faith. A gift that you will love with your whole heart.”

Psalm 139: 13-14 “You made all the delicate, inner parts of my body and knit me together in my mother’s womb. Thank you for making me so wonderfully complex!   Your workmanship is marvelous—how well I know it.” (NLT)

The long journey of getting help began. It was hard! After visits to assessment centers and the pediatrician, all was confirmed. JJ had autism.

On day one, Mom accepted it. Now she knew what was wrong, and what needed to be done.

On day two, she was kind of okay with it.

On day three, she was not okay with it. She started to grieve.

Mom grieved for her child for a month. She thought about all the dreams and plans she had for him. She thought about how she would never be able to take him on his first shopping trip, for his first swim, for his first lunch date, as she did with her older child. She thought about the future, and she was more than devastated.

At the end of one month of tears and sorrow, the Lord comforted her.

Psalm 16:8 “I know the Lord is always with me. I will not be shaken, for he is right beside me.” (NLT)

God’s comfort was more than welcome, but accepting the situation was still not easy.

JJ is my son.

I am the Mom in the story.

Since we got the diagnosis a year ago, things have happened so fast. Not many of you may know this, but getting quality intervention for autism in this country is difficult and very expensive, especially if you are not in Nairobi, the capital of Kenya.

Getting intervention for my son has been an uphill task. Having a child with autism in a developing country is not a joke. I wish our leaders would understand that (just had to throw this one in).

Despite all we have gone through, this young man is the light of our lives. He has taught us never to underestimate his intelligence and his abilities. He has taught us patience.

Psalm 130:5 “I wait for the Lord, my whole being waits, and in his word I put my hope.” (NIV)

In the past year, I have learnt to wait on God with regard to all the issues surrounding my son. When we first got the diagnosis, I was eager to get him started on whatever he needed to get fixed. The Lord, however, had other plans. Things have not quite worked out the way we would have wanted, so I have had to learn to trust in the lord completely and wait patiently to see what He will do.

In April last year, the young man would not write, could not color neatly, was unable to follow instructions and could not express himself.

A few weeks ago he told me, “Mummy, put on your shoes. It’s time to go to the zoo.” I was speechless.

He now loves coloring and writing.

The Lord has been at work all this time – I just needed to be patient.

The world tells autism parents that they should not be patient and that they need to act fast. That’s true, yes, but the Lord adds, “Let me do my work in the child because I created him.”

Psalm 125:5-6 “Those who plant in tears will harvest with shouts of joy. They weep as they go to plant their seed, but they sing as they return with the harvest.” (NLT)

In the past year, I have cried so many different ‘types’ of tears – tears of frustration, tears of disappointment, tears of sadness, etc. I have asked the Lord so many times why my son had to be the one with autism – why He allowed this. I have asked why everything that surrounds autism is so expensive. I have also asked, in tears, of course, the hard question most autism parents ask – “Why can’t/didn’t you heal my child?”

Has the Lord seen my tears? Yes, He has. Has he answered all my questions? No.

So, what next?

I wait patiently. Yes, I will cry some more, but with time, my tears will turn into shouts of joy. You can imagine what I felt when my son asked to go to the zoo! I believe there are many more moments of joy coming ahead, like when he decides to say hi to a stranger when previously he would run off, when he agrees to give family members hugs when previously he was not interested in them, when he asks where an uncle he has not seen for a while has disappeared to, etc. These are moments of joy, moments that follow the tears.

Isaiah 40:31 “But those who trust in the LORD will find new strength. They will soar high on wings like eagles. They will run and not grow weary. They will walk and not faint.” (NLT)

 

Lord, you know that there are so many parents out there like me – parents who have questions for you, parents who need to know you are walking with them on this journey. Lord, I ask that you would comfort us, strengthen us and encourage us as we continue on the road of autism with our children. Carry us when we can no longer lift our feet, provide for us when we no longer have the resources, and surprise us when we are just about to give up. Amen.

 

 

 

Dear friends, do you know of anyone who may need to read my story today? Please forward this article to them, and also share with other people so that the message of autism awareness will travel far and wide. Thanks again for reading this week’s article, and don’t forget to share your comments in the section below. Have a great week ahead!