Parenting a Child with Down Syndrome during a Pandemic Has Good Days and Bad Days, Says This Mom

Tin Panopio’s firstborn son, 5-year old Jace, was diagnosed with Down Syndrome when he was still in the womb. We asked Tin a couple of questions about her parenting journey, and how she manages to take care of her two young boys in the middle of this pandemic, while her husband supports their family by working abroad. Here’s what she shared!

Mom Shares: Parenting a Child with Down syndrome During Quarantine

After two miscarriages in 2013, Tin and her husband John were finally blessed with their first baby. However, during a routine checkup on her 12th week of pregnancy, Tin’s doctor noticed a fetal anomaly occurring, and suggested a procedure to diagnose the baby’s condition. The procedure was risky as it could lead to another miscarriage, and so Tin and her husband declined to do it. They opted for a safer but less accurate procedure instead, which only involves a blood test. The results came out showing a 75% chance of Down Syndrome. When he was born, it was then confirmed that Jace has Trisomy 21.

 

(Layout) How did you feel upon learning Jace’s diagnosis?

 

At first I could not believe it. The trauma of the previous miscarriages still haunted me. There is always this fear that we will lose him. With his condition, I was already considered a high risk pregnancy. It was really a hard time, but we held on to our faith and believed that God gave us this special gift for a reason. My husband and I were grateful for the support of our families and closest friends. They loved Jace even before he was born, and because of this, we were able to accept the new life that we were about to have. It will be a little different from a typical family. So, we tried to prepare ourselves by researching about Down Syndrome and joining support groups to have a better understanding about our son’s condition. The early detection really helped us prepare financially for Jace’s medical needs.

 

(Layout) How has it been like caring for your child during this quarantine period? Were there any particular challenges made more difficult by the pandemic? 

 

Being a mom of two is hard, but what makes it harder is that I don’t have someone to help all the time. My husband is not around because he is working overseas and my mother-in-law can only look after my kids when I need to cook or eat. Prior to ECQ, Jace was undergoing his regular Occupational Therapy, Physical Therapy, Speech Therapy, and Special Education sessions. The challenging part is providing therapy for him since I cannot bring him to the center during quarantine. I opted for tele-therapy. I just realized how hard it is to be a therapist! Kudos to them! It is physically and emotionally draining.

There are good days and bad days. Good days when Jace would really cooperate and enjoy all the activities and bad days when he is not in the mood and would just whine and refuse to do the tasks. But regardless, I am happy that I get to have this time wherein I can give him the undivided attention that he deserves.

 

 

(Layout) Can you tell us about specific 'good day' and 'bad day' experiences during Jace's therapy sessions?

 

Good day therapy sessions consist of completed tasks without, or less, whining. For example, doing memory exercises where the teacher would ask him to get the letter. If he is in a good mood, he will be able to identify the letters without fussing. But if he is not in the mood or not focused, he will resist following instructions, ignore the teacher, and end up not doing the tasks. We will then both end up frustrated because I will be insisting him to follow me even if he does not want to.

For PT, there are certain activities where he is less cooperative because it challenges him physically. He does not like doing kneeling activities since it needs more work on his pelvis and balance. His therapy is focused on strengthening his core, because Jace has low muscle tone which is very common for his condition. So, it is expected that when we have a PT session and there is a kneeling task, Jace will get easily frustrated. Other than that, he manages to complete the session without any fuss.

 

 

(Layout) Apart from transferring to tele-therapy and adjusting your home routines, what are some of the other ways that helped you and Jace cope during this time?

 

During the ECQ, we strictly stayed at home. The only time we got to see the outside world was when the ECQ was lifted. We went to my parents’ house and that 10-minute ride from our home was a treat for all of us! And to keep my children entertained, I decided to buy a new slide set for them. Jace loves indoor playgrounds in the mall, so this is the closest thing that he can get for now!

 

(Layout) Throughout this quarantine, what are the new discoveries or lessons you gained about yourself and Jace?

Doing the therapy sessions with him helped us bond more. He follows me more now. Prior to the quarantine, after his therapy session, I am tasked to practice the activities at home and I often tell the therapists that it is difficult for me to get Jace to cooperate with me. Honestly, I feel like I was not able to give the attention that he needed when his brother arrived. But it all changed, when our tele-therapy began. My son sees me now as his teacher as well and he is more compliant when doing the activities in our sessions. It serves as our “us” time where we work together for his developmental needs. Seeing his milestones no matter how little it may be is the most fulfilling reward for me.

 

 

(Layout) What are your hopes and dreams for Jace? 

 

My dream for Jace is very simple – for him to be able to live his life independently wherein society will look past his disabilities and instead focus on what he can contribute. Together with his father, we will always be here to support him in any possible way we can so that he can have a good and happy life.

 

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