Journey of Hope

My Journey of Hope

I call my life a Journey of Hope because I'm still on the road, still raising my child with Autism and it is a Hopeful one because of my God. 

It is He who has sustained me, given me wisdom, and is healing my son day by day.
Since the day of diagnosis till now, it has been a roller coaster ride, with the occasional crash even but it still goes on.
For that, I'm thankful.

There is No cure for Autism  - the Dr. told me. But there are people who can help your son.

I was handed a list of names, addresses and phone numbers.

It was all a blur.  A fuzzy time of tears as I stumbled out of her Office after mumbling Thank you.

My son was oblivious - only interested in the table of Lego bricks at one corner.

My husband came, picked us up and I just remained silent till we got home.

It was only in our room that I told him what the Doctor had said.

But he can grow out of it right? Maybe we should get a second assessment. We had already had an assessment - done by a Psychologist who was helping our Church set up a Therapy Centre.

 

20/2/19
How I ended up with All day Breakfast

A , my ASD son has taken to insisting that I share my food with him. So here I am with
half a croissant, a fried egg, a slice of baguette and ham.

16/4/19

A, is on a 2 week holiday and is driving me nuts. I can only keep calm, pray and "review my situation" as Fagin once said in Oliver Twist. As I do so, I recall that I have let things slip. Having been lulled into a sense of complacency with his progress.
Right now, I need to draw boundaries, do social stories again  ( not so easy, now that he knows what I'm up to), and be more cunning in anticipating arguments.

How to behave in Church.
A new topic - I kind of assumed he knew how to, having gone to church all his life.
There are however some new challenges.
Now that he is trying to socialise - he doesn't know how to stop.

What Next?

What Next ?

I was much calmer when my husband arrived at the hospital to pick us up. I didn't know how to tell him about the diagnosis. He had not read as much as I had about Autism and still held out the hope that Alyon was okay. "His eye contact is okay. He's just hyper."

Back home, in the privacy of my home, I broke the news to him. He found it so hard to accept. He suggested getting a second opinion. I just shook my head. I immediately contacted a Church friend who also had an ASD child and she passed me reading material and advice. She was a great help. I read as much as I could and everything became so clear now once I had accepted the diagnosis. It was a whole new world with a whole new vocabulary.
Sensory Integration, Triad of disorders, Theory of Mind . I had a lot to learn. I had to take action fast. I had to help my son. I read that the optimum period for Early Intervention was up till the age of 6. After that, the progress would be slow. Alyon was already 4. There was no time to lose.

Note to Parents

Parents,do not go into denial if you have received a diagnosis.
Seek a second opinion if you must but take action because you are the only one who can help your child. The faster, the better. Fathers, especially seem to find it harder to accept but Mums who are helping their child can help by explaining what action they are taking and how its going to help the child. 

Contrary to popular opinion, they do not "grow out of it". They do not "get better" with time. They only improve through intervention. Its so important that your child gets all the help he can. And it will make your life better too. I have seen parents go into denial and after that depression because their child "did not grow out of it" 

Looking Back - the Quest for Early Intervention Part 1

Looking Back - the Quest for Early Intervention

I had called up some of the recommended places and the results were disappointing. Speech therapists, Occupational Therapists, They all had waiting lists and all I could do was wait.

 One Special Needs School even told me that if my son was high functioning, he would be even further down the waiting list.
 " Because we have to take in the medium to low functioning ones first."
"By the way, Mrs. Yap, are you living in HDB or private property?"
"Why?" I asked.
"Because, we also need to give priority to lower income families. Sorry, but your son will be further down the waiting list. I suggest you go for private practice if you want help for him."

This was of course 2001, 15 years ago, I hear things are better now. More options, more Eipec programmes, more therapists around. But back then, it was a desert with sparse offerings.

I was on my knees praying every day. I had read that the optimum time for intervention was up to six years of age. Alyon was already 4, not able to speak and with all those behaviours.

Intervention - Of the Supernatural Kind

My husband and I decided to attend a Christian Evangelistic Meeting held at the National Stadium. A prominent evangelist who was famed for Healing would be there. At the end of the meeting, they called for people to come down from the stands for prayer. I carried Alyon, who was fast asleep.

 A lady from among the Ministry Team came forward and offered to pray for me. I told her about the recent ASD diagnosis. When she prayed for me and Alyon, I wept, because everything that she prayed just echoed what I needed. I was so amazed, how did she know ? I asked her later. She told me that she too, had an autistic son. I was blown away! Of all the people in the Ministry Team, God had arranged for a mother who understood my pain so well. It was a clear sign that God had not forgotten me. In fact, He knew everything about me and had sent help.

Two days later, the Speech Therapist called me and informed me that there was a space for Alyon.
A child had withdrawn due to migration. Then the Occupational Therapist called and informed me of a free slot for Alyon. I was on my knees again - thanking God. The dark clouds had lifted and there was Hope!

Looking back - The Desperation

Last Saturday 16 April 2016 was another Hope for the Journey (HOJ) meeting. Wei Ping was the Mum sharing her journey with her son. Her sharing really brought back a rush of memories

The kid from hell"

Her descriptions of her son really brought back the nightmare of those days. Alyon, my son was similar to hers in many ways. He was hyperactive, constantly running around, crashing his head on me, throwing tantrums for no apparent reason, bolting in public places and no speech. Add to that a restrictive diet, lining up items across the the hall, and refusing to wear almost every item of clothing bought and you have " the kid from hell."

Wei Ping apologized for using a phrase like that for her boy. But those of us who had similar experiences just nodded sympathetically. We would have said the same too. And some of us are just or still experiencing all that and more.

When Alyon was first diagnosed, I was at my wit's end. All I had was a list of Speech therapists, Occupational therapists and Special Schools given by a KK doctor who said she would see my son again in a year's time. I had never felt so helpless in my life. I would just look at him and cry. But I cried out to God too. "Jesus! Please help me! What do I do next!"

Revision, Exam stress and OCD

Revision, Exam stress and OCD

Its almost a month to the O level exams. With Alyon, exam stress = anxiety = increase in OCD behaviour (washing).

Today was such a day. So action taken:

1)Mummy washes his  hair. He is in swimming trunks.

2) I give him a partially filled bottle of shampoo. Otherwise, he'll use up whole bottle and spend and hour rinsing hinself.

3) I'm outside the bathroom and give him timing for shampooing, rinsing and drying. He feels bad about the soapy bathroom and asks if he should clean it. I say as calmly as I can , "No, thanks. I'll need to use it next."
*Shudder*  I was told by psychologist that they can extend OCD to bathroom.

The anxiety level is clearly high I can only moderate it. Drugs are not an option so we manage by managing behaviour and prayer. 

My life thus far in a nutshell

My account of what I had experienced in ACJC and my life after college was posted on the Reunion site. I was asked at first to write my story because  some were fascinated by my homeschooling my older boys. But the best thing that had happened to me in college was finding Jesus and his love for me. How to reconcile the two?

Then it struck me, so obvious. Without my faith, how could I have gone on my journey? Jesus has been with me from Day one of Parenting with the older boys and all the way till now. Through all the trials and pains. Heartaches and tears.

SPOTLIGHT ON LEE PEW YING (AC5)

In enrolling into ACJC in 1977, Lee Pew Ying (AC5) received more than just a junior college education. It was in the brand-new school hall that she met God. Since that day, her faith has sustained her through the different phases of life, and she will continue to draw strength in her Lord. As Pew Ying shares:
“This is my story, thus is my song.
The best thing that happened to me in ACJC was that I became a Christian. For the first time in my life, I was overwhelmed by a God who loved me in spite of my sins. I cried non-stop at the end of Religious Emphasis Week – tears of repentance and joy at the reality that Jesus loved me so much.
This love has sustained me all these years through University, marriage, career and family life. I graduated, became a teacher, married a wonderful guy, Mathew, and we have three boys. Jeremy, Joseph and Alyon are now 24, 22 and 18 respectively.
In 2000, my youngest son was diagnosed as having ASD (Autism Spectrum Disorder). My eldest son had attention problems (later also diagnosed as Asperger's). My middle son also began showing behavioural problems because I was spending so much time on No.1 and No. 3.
I cried out to God and He answered. My husband and I decided that I would home-school the two older boys. Released from the academic pressure of the Singapore school system, I could also concentrate on helping our youngest. This was 15 years ago, and home-schooling was a relatively new concept. We were treading on unfamiliar territory. Some people thought we were crazy.
God was faithful and gave us the wisdom to do home-school our sons. Our two older boys graduated from the local polytechnics with diplomas. Jeremy has served National Service (NS) and will be completing his University studies. Joseph is finishing NS soon and will be going on to University. Our youngest will be sitting for his ‘O’ levels this year.
Currently, I do part-time teaching and help out in a Parents Support Group for Parents of Children with Special Needs. I'm also writing a blog to record my journey with my sons to encourage other parents with ASD children.
What I have obtained in ACJC was not just an 'A' level certificate. I have received the gift of a new life in Christ, which has helped me overcome problems and emerge joyful and full of hope. To God be the glory.”