Family Life of Parents with Special Needs Kids

Being the parents of 2 young ones, we understand that parenting, though it is both fulfilling and blissful, it naturally also comes with its own set of challenges as well as potentially exhausting all your energy available. We are indeed blessed to have great family support who play an integral part in helping us jump the parenting hoops, balancing work commitments and even squeezing some quality yet very little time together as a couple. 

However, we do know that there are other parents out there who may be struggling with carrying out the various roles and responsibilities, especially for families needing to provide that extra care for their children or youth with special needs and disabilities. With the current global pandemic, we can only imagine how difficult a period this would be for this group of parents, especially having to juggle their time between the family, livelihood, maintaining the overall development and ensuring the well-being of their special needs child is not compromised in any manner. These parents really deserve our utmost respect as they are the ones who remain strong, resilient and providing endless support to their child in this tireless & unconditional love journey. In order to provide more insights on how they cope and better manage their family relationships despite all the challenges brought forth, we invited one of our personal couple friends, Tian Lee and Cai Xia for a conversation, to share with the readers their family life experiences, on being fully dedicated loving parents to their child with special needs and their supportive love relationship for each other.

Just to provide a little background, Tian Lee and Cai Xia are a happily married couple for 19 years, Tian Lee works as a Sales Director and Cai Xia is a stay-at-home mum. They have two beautiful children – Megan 16 years old and Malcolm 14 years old.  Malcolm was diagnosed with autism spectrum disorder when he was 2 years old.

Here are the highlights of the sharing session that we had with them:

Could you describe how a day’s schedule would be like for your family?

On weekdays, both of us are awake by 5.30am.  Tian Lee’s routine includes a morning run, breakfast with family, meditation, sending Malcolm to school and will usually be at his desk by 8am (home or office). Work is quite intense and will usually last until 6.30pm, with only a short break for lunch. Cai Xia will prepare breakfast for the family. She will be busy with house chores and tending to her balcony garden. Megan usually leaves for school after breakfast by 6.30am and will usually be back by late afternoon. We have taught Malcolm how to travel independently and now he comes home by himself.

After school, Cai Xia will have a simple chat with Malcolm about his day using a special tool called Proloquo2Go. Malcolm has quite severe speech delay so it’s important to practice simple conversation with him regularly. She will do stretch and balance exercises with him to help him with his flexibility and muscle tone. She will also involve Malcolm in daily chores such as food preparation and cooking.

In the evening, we have dinner together as a family. And we will start our bedtime routine around 8pm.

During weekends, we try to have family outings (hopefully outdoors) or stay home for movie nights with homemade popcorn and snacks.

Tian Lee and Malcolm will also have a basketball class on Sunday afternoons.

How do you think your marriage lifestyle has changed before and after having kids?

Before having Megan, we are usually busy with our respective careers on weekdays and come to weekend, we volunteer together at MINDS. This is also where we met each other, pak tor for 1-2 years and got married

After having Megan, Cai Xia quitted her job to take care of Megan full time and later Malcom. With the kids, Life definitely revolves around them. Every decision that we make is with the kids in mind. Both of us are not the “cheong and party” type of couple and we are both quite homely. So personally we feel there is no big change in lifestyle. Having children is definitely what we both wanted in our married life. We still remember discussing how many kids we wanted. Tian Lee said at least 2 and I said at most 2. So in the end we have 2! 😀

Do you experience difficulties trying to balance between caring for your child with special needs and the rest of the family members? If so, how do you try to overcome it?

When Malcolm was diagnosed with autism, we were overwhelmed with the need to learn as much as we could about this condition and what best therapies that we could provide for him. We even engaged a domestic helper during the first two years he was diagnosed so that Cai Xia could be free from doing the household chores to focus 100% on attending classes to teach herself on how to teach and interact with him. She learnt PECS, ABA, DIR floortime from therapists and online classes so as to better equip herself with the skills to teach him.

Both of us focused on what was important and what we did well in. Hence there was hardly any disagreements between us during the initial stressful years of Malcolm’s diagnosis. We were also blessed that Megan was an understanding and independent child. We hardly ever had to help her in her studies or schoolwork through the years.

Traditionally, the role of husbands has always been viewed as the main breadwinner while their wives would be taking care of the household. However, we have also seen a huge role reversal in recent years. How do the both of you decide who undertakes which role and responsibilities? Has there been any moment which you hope to switch roles one day?

Cai Xia: I have never been career-minded and my nature is always caring for the family first. I even told my secondary classmates during a Career Guidance session that my dream was to be a housewife, have a loving husband and 2 kids. It has come true! I am content to support TL in his career by taking good care of him and the family. He supports me by working hard and making sure we do not have to worry about finances, although sometimes I feel he works too hard and sacrifices time with the family or getting to know more about our children’s lives. Sometimes I do wonder if I had been a working parent, does Tian Lee have to work so hard? But I also feel he enjoys the challenges that his career brings him.

So no, I have never hoped to switch roles as we both enjoy and are good at our current roles.

Tian Lee: I am still the breadwinner. Luckily I am fairly successful in my career but the price is the sacrifice in time and attention. Nowadays, I try to help out in housework in the evenings and on weekends. Actually this housework can be therapeutic and can help me to destress. I don’t think I can ever switch roles with Cai Xia.

Were there ever instances when the emotional or societal pressures of having a child with special needs become overwhelming and that made you almost feel like giving up? How did you all overcome it as a couple?

There is definitely emotional pressure as we worry about Malcolm’s future  and the fear that Malcolm will never have a regular life growing from a boy to man.

This is on the minds of every parent with a special needs child, not just us. We take comfort by knowing we are not alone in this journey and there are fellow parents and support groups we could share experiences and information with. We try to plan for them financially by talking with a financial advisor and getting our finances in order. 

Other than that, we have learnt to just enjoy Malcolm as our son and there never has been a day when we felt that life would be better off without him.  He has strengthened our bond as a couple and we have learnt to appreciate life’s little blessings.

We stayed strong and steadfast and will do our best to prepare for his independence and his life.

How do the both of you manage disagreements? Who makes the final call relating to matters concerning your kids or is this always a shared decision?

We rarely have disagreements as we usually discuss and come to a joint agreement. Cai Xia will usually take the lead in the primary care for the children and I try to focus on the overall financial preparedness of the family.

How do you ensure that your relationship stays strong despite your tight time schedules having to balance work and family? What is your marriage mantra?

Cai Xia: Our roles in the family are quite clearly defined. And we are both happy in our respective roles. But sometimes I do get upset with Tian Lee and fume quietly whenever I feel that he gets so absorbed in his work that he is oblivious to everything else. Then I explode like a volcano. But now I try to tell him what is wrong and he will try his best to understand. I am happy that Tian Lee is trying to be a better husband and father every day.  We are not sure if we have a mantra. Marriage is always a work-in-progress no matter how long we have been married and we are always learning.

What have been your greatest joy and challenge in your marriage life? Do you think that having a child with special needs has strengthened and bonded the family better?

Our greatest joy is our family.  Having a special needs child has given us a common goal to give him the best possible outcome in life and we cannot achieve this if our bond is weak. We certainly think having a special needs child has made our marriage more meaningful and we learnt to appreciate each other much better than we when we were newlyweds.

Any special moments and other tips that you would like to share with the readers on how to make your marriage a wonderful journey and ride through all the challenges?

Both: Accept, Invest, Overcome and Enjoy this strange journey called Life.

We hope that from the sharing by Tian Lee and Cai Xia, everyone is able to benefit from the understanding that they are never alone experiencing all the various challenges managing family relationships and maneuvering life’s uncertainties. There is never a single best formula to solving any family issues but rather the solution should be the one most accessible and acceptable to all parties. As the saying goes, there is always light at the end of the tunnel.

Take care and stay safe everyone! 

Article contributed by Edmund & Jenny (Founders of Dating Moments). Photo by Tian Lee and Cai Xia.