Special thanks from a Special Needs Family

An open letter of thanks from parents of a Special child

This is a letter of thanks and appreciation from parents with a child diagnosed with ASD (Autism Spectrum Disorder). Children with ASD usually have difficulty communicating or interacting with others, and find it hard to function socially or professionally.

It can be an overwhelming experience for parents and families. There is usually considerable stress, both financial and emotional. Even though autism is not covered by insurance, there is still a crucial role that financial planning plays in securing a family’s future.  Alan and May know all about it, and this is their story.

Life is never easy with ASD

Being a parent of an ASD child, life is never easy. I believe all parents with ASD children feel the same as we face a multitude of frustrations, issues and challenges (persistent difficulties such as repetitive behavioral issues, sensory issues, meltdowns, etc.) along the journey.

Nicole is non-verbal, thus, social communication and social interaction are our main challenges since she was diagnosed. It is hard to watch her struggle with words and we have been finding ways and working hard on ways of communication.

Acceptance is the first step – but that is not enough

Though we have accepted autism a long time ago, but acceptance does not have an ending point. It’s an ongoing road with us carrying the fears and worries along the demanding journey. We deal with the fears and uncertainties that come with having a child with ASD.

Will she become verbal?
Will she be independent?
Will the society accept her?
Will she be able to hold down a job?
What is her future?

Who will be looking after her after both me and my husband pass on?
Who will pay the extra expenses when we are gone…?

I don’t have the answers to these questions and that terrifies me. No one likes to think about it, a child with special needs will likely need specialized care if something happens to the parents.

There is a future worth fighting for

However, we are not going to let our fears get over us. We realized that we have to get going right away because time is of the essence. We need to  focus on what our mission is. I was once told, “Just think of what strengths she has and where she needs help. It is like a marathon to help her grow to full potential.”

We did a check on all services provided for special needs children such as biomedical, acupuncture and massages, occupational therapies, speech therapies, home teaching, behavioral management courses, etc. We did all we could to hope for a ‘cure’.

Over the years, we gathered information and searching for resources that could help Nicole reaches her full potential and that has so far cost us a bomb!

Autism is a condition that is not covered by insurance, so all of the expensive therapies and treatments have to be paid out of our own pockets.

Nicole enjoys handicraft such as cross-stitch, sequin-sewing, copper-tooling, etc. She loves baking and cooking too! Her strengths include the ability to learn, following instructions and the ability to complete work tasks at table for a period of time. She is currently helping out in our daily house chores too.

Core problem? How will Nicole cope in the future. The future is full of unknowns.

I was suspicious of Financial Planning – at first

I was hesitant when Goh Jui Teow (JT) first approached me and explained about trust funds and financial planning. He is someone I did not know and I was suspicious of his intentions at first. I did a check online and decided to keep an open mind after discussing with my husband. As we knew we have to do some planning for Nicole, we met up with JT  to find out more. The meeting turned out to be a real pleasure and we appreciated his great service and support.

He opened up our perspectives and changed our mindsets.

Everything changed after the meeting – for the better

It’s not just about how much money you leave your ASD child, but also how you leave it to them. This was the big one.

Simply leaving a will and leaving everything to an ASD child is not practical so it is important to sign up at SNTC (Special Needs Trust Company) to dictate proper guardianship of our ASD child, the execution of the will and trust upon our passing.

Editor’s Note: The Special Needs Trust Company is an independent company granted NCSS (National Council of Social Service) membership, Charity and IPC (Institute of Public Character) status.They specialize in trust services and management of  endowment funds for the benefit of persons with special needs.

We have first thought of letting her elder brother Nicholas to do this thankless job, but later changed our mind. It would be unfair to him as he needs to start a family of his own. He will be heavily burdened financially.

JT  later reviewed our financial picture, developed a monetary strategy and offered options that made perfect sense for our situation. Our main goal is a proper plan for the additional financial needs that Nicole may have when we are gone.

He focused on helping us create a positive quality of life we can enjoy, as well as planning for the future.

Financial Planning serves a great purpose

The emotional and financial struggles faced by families with ASD children can at times be overwhelming but there are several planning solutions to the financial problems that they now face and also in future. Every family and situation

Every family and situation is different and every child with autism is different. It is important that parents of ASD children properly plan for the additional financial needs their child may have from adulthood to old-age.

It is important that parents of ASD children properly plan for the additional financial needs their child may have from adulthood to old-age. Not only to discuss the guardianship, I personally think that parents should find time to meet a financial planner who specializes in autism to discuss and review your options for financial planning, wills and trust.

By meeting them, I believe parents of these children with special needs will be able to take the heavy load off their minds.

In the words of JT

I am a financial engineer with One Estate Solution. I first met May in Metta School. Like many of the parents with special needs children, they worry about Nicole’s future when they leave her for good.

However, they are too busy to think and have little clue on how to go about planning. I shared with them the importance of special needs planning to secure Nicole’s future by setting up a special needs trust with SNTC (Special Needs Trust Company). I arranged a meet up for Alan and May together with the case manager from SNTC to prepare a detail care plan for Nicole.

Now, the parents have a greater peace of mind knowing that they have safeguarded Nicole’s future with sufficient funding and the funds will be managed by SNTC.

While securing Nicole’s future, it is important to note that Alan and May did not have to compromise their own retirement plans. They are now focusing on building the retirement nest that they want.