Note to new readers: This post is part of my 30 Days of Writing Practice. I am allowing blocks of 10, 20 or 30 minutes of my day solely to putting my swirling thoughts on paper. No going back to edit which will only serve to stop the stream of consciousness. My writing buddy and I, we call it writing from the heart. Please read my introduction for the full story.
IMPORTANT NOTE: The characters/names below are purely fictional. They’re the combined experiences of a few people I’ve met rolled into 3 characters. And in case you do not know it yet, I have two boys. Migo is 14 years old and has autism. Gabo is 13 years old and is a mainstream kid.
When I look at Migo and imagine him 20, 30 years from now, I invariably panic. Who will look after my son? When Ariel and I are gone? (Choking sounds in throat.)
You must have heard about other mums who kill their disabled child first before committing suicide. It is horrible. Horrifying. It is beyond belief. Yet a small part of me, nay I lie, a part of me fully, completely understand why these things happen. A mum always thinks that no one else will care and love her child as well and as much as she will. Having said that, I want to build a stable and secure future for my autistic child. I want to leave this world secure in the knowledge that even if my husband and I pass away, Migo will be safe and happy. This wish is every mum’s wish. But for a mum with a special needs child, it is more than a wish, it is a mission! (If you notice, I have so many missions in life.) You might say that Migo does have a brother in Gabo. Alas, I do not expect Gab to care for his brother. Not at all! I’ve told Gab that many times over. He will have a life of his own. Regular visits to Migo (when Migo goes to a serviced/shared home for example) to ensure his brother is in a happy place is all I really expect Gabo to do.
Many years ago, I wanted to build a community, a website, to bring together resources and support for special needs families specifically migrant Filipino families. When Migo was diagnosed at 3 years old, I did have tremendous support from the government. But I also needed to speak to other Filipino mums and I could not find them. It was isolating. Migrant ka na nga, meron ka pang child with disability, double jeopardy... Kick in mind tenacity. If you don’t have mental strength, a mental breakdown is in the offing…
Meet Anabel. Migo and Ron (Anabel’s son) went to the same special needs school in primary. I was drawn to her. She had energy I like. She was a nurse by profession but had to give up work to care for Ron full time. We became fast friends. We visited each other’s houses from time to time. Then her child, as he got older, became harder and harder to care for. Ron’s bedroom walls and windows were boarded up with wood panels to prevent him from jumping out the window. His bedroom wall plaster had holes all over. He sleeps on a mattress on the floor to keep him safe. On more than one occasion, neighbours saw him up on their roof. It’s enough to give any parent a massive heart attack. Fortunately, Ron was rescued in the nick of time, all the time. Anabel withdrew socially. I left her alone, I was only a phone call away if she needed me. Then I moved houses. I saw her again at a kids’ Tae Kwon Do school a few years later. Her mainstream eldest son attended the same TKD school as my boys. I was so excited to see her again. She intimated that she suffered a nervous breakdown, been in and out of the hospital, hence her silence. She was still recovering. I cannot express how dark and murky her world was. She had to limit herself to family, she had no energy for friends. I understood completely. I am blessed with Migo. He who is a quiet and reticent angel at home and he who does not punch holes to walls. My sunshine who does not run out the door into the street, for that matter. I am grateful everyday.
Meet Becky. Migo and Al (Becky’s son) attended the same soccer program for special needs kids. They were around 5 or 6 years old at that time. Again, when Al got older, he got worse and worse. Self harm was a daily nightmare. Al had to wear a helmet day in and day out to protect his head from his own banging against the wall. He was also prone to hurt others, his own mum and dad included. He had to be put under medication, it was the only option. Oftentimes in cases like these, parents face a tough and oh so painful decision whether or not to give up care for their special child to the state. This is a heart and gut wrenching decision. No one wants to give up one’s child. One wants to do EVERYTHING to keep ones child. Heartbreaking really. Because it can cause a marriage breakdown. Heck, it can lead to a total heart, soul and body breakdown. Total desolation for families. Imagine the siblings. The brothers and sisters…
Meet Carol. She is a single parent who lives in a shared accommodation (meaning she is renting a room with her SN child). She works as a nursing aide during the day when her son is at school. She doesn’t drive. So she has to run after a bus to ensure she gets to school just in time to pick up her son after classes. She can’t be late. Life is hard. She lives in a constant state of frazzle, 24×7. My doctor whom Carol was also seeing gave her my number thinking that I could be of support in some way. She bravely rang me blindly. She called me regularly for months. Usually just to offload, someone to talk to, and mostly to ask for advise. I supported and offered guidance in getting a tourist visa for her mother from the Philippines. She succeeded and her mother came to help her care for her son for 12 months. 12 months was enough to give her respite, reprieve and a chance to strategise on their mag-ina future. Usually when you are in the thick of things, you cannot necessarily make sound decisions. A step back is necessary to gain perspective and clarity of thought. (I actually wrote about the time when I saw Carol for the first time. I called her Ms M then. Click here.)
Our care for our disabled kids is 24 x 7. Unless the government provides respite. There is respite yes, and a very long long waiting list. Blessed are those who have extended family who can give relief even for a few hours so one can do ones groceries in peace. Literal peace. So spare a thought, prayer and love to hard up Special Needs momsies.
I have many special needs mum-friends. We may not see each other regularly, but we know that our connection is strong. We support and help each other unconditionally. I will drop everything for my special momsies. They hold very special places in my heart.
And with that, time is up, I’ll see you again tomorrow.
(I don’t have set topics in mind. Nor a theme subject for the 30 days. I am just slugging it along everyday. Hmmm. I think I better do some mind mapping. Tschuss.)
Always from my heart,
ChaR-g
PS If you are wondering what happened to the website idea, I ran out of steam. It was too hard. So I moved on. Migo does have his own residence at Thinking In Pictures. Say HI to my angel.
For all the angels floating around on earth, hit play and enjoy Sarah McLachlan.
D says
D, that was a bit hard to read. Day 7. My heart goes out to the SN moms out there. I am so glad Migo is such an angel. And that he has an angel in you.
myGloryBox says
Oh my Dungho. If it was a hard read, it was even excruciating writing it. Once finished, I had to sit for a full minute just to allow emotions to boil over, and to… warm/calm down…. That is why I seldom write about SN you may have noticed…. – Your D.
Marifel says
Cha, this made me teary eyed. But please continue to write.
Tet says
It’s heartbreaking to read about the travails that parents of kids with special needs go through. I hope that more people like you will share and be a support to other parents in the same predicament. I think your passion for writing is part of God’s plan for you. You are educating us and at the same time, you serve as an inspiration to a lot of people. Keep it up, Chachi!