Parenting Children with Special Needs
Aliw: Hey, it’s Aliw. You know, one of the biggest milestones in a person’s life is raising a child. And we’ve tackled that topic on Making Changes a few times, most recently with our episode Dads with Autistic Kids. But we wanted to hear more from parents with special needs kids. So, today, I want to share with you an episode of Faith and Family, another podcast from INC Media audio.
In this episode of Faith and Family, two moms, each with a son with Down’s syndrome, have a conversation about what life is like with a special needs child, and how to overcome special needs parent burnout. But also the life lessons that’s changed their perspective in this beautiful journey. Let’s listen in.
Mariel Gutierrez: Hi everyone, you’re listening to the Faith and Family podcast, a Christian family community that aims to promote Christian values for every phase of your family life. I’m Mariel Gutierrez. This week, we have two moms, each with a son born with special needs.
Maribel Aquino: Hi, my name is Maribel Aquino from Pomona, California. I have a three-year-old son named Brennan.
Acelyne Parco Sagabaen: My name is Acelyne Parco Sagabaen from Burlingame, California. My son is Jaxson, and he’s one year old.
Mariel: Acelyne’s son, Jaxson was diagnosed with Down’s Syndrome during pregnancy, and Maribel’s son, Brennan was diagnosed at birth. Down’s Syndrome is characterized by intellectual and developmental delay due to a chromosomal disorder. Despite these challenges, a growing number of people with DS live independently and are able to find employment.
Life with a special needs child
Maribel: Three words to describe Brennan. Number one, he is brave. He’s sociable and diligent. He is brave. Actually looking back, my husband and I were thinking, “There must be a reason why we named him Brennan because the meaning of this name is brave.” Brennan is sociable. He gives a hug to everyone he meets. He lights up the room with the sweetest smile. And Brennan is diligent. Until now has been receiving therapy, physical therapy, occupational therapy, and then now speech therapy. And he works so hard and he doesn’t complain.
Acelyne: Three words to describe Jaxson. Jaxson is strong, and loving, and mellow. Maribel, what’s a fear that you had when you first found out about Brennan’s diagnosis? And looking back what would you tell your old self about that fear?
Maribel: More than anything else, I feared for his health, and I feared for his life. You know, those unanticipated health issues. When we learned about his congenital heart defect, we were so scared. And looking back, what will I tell myself, I will tell myself that everything will be okay. Learn to let go and let God take control of everything. And everything will be okay. I remember where during NICU (newborn intensive care unit) days hospital stays, I kept telling myself: “Nothing God gives that we cannot handle.” I kept on repeating those words in my mind. And it helped me get through all those difficult situations.
Acelyne: I had fears of—I had a lot of fears when I found out about Jaxson’s diagnosis, like, I had fears that people wouldn’t include him or love him just because he had a disability, like, I was so scared that people would leave him out. And I also had fears of having the ability to care for a child with a special with special needs, because I had no idea how to care for someone with special needs. I’ve never been in that situation. I also had fears of having enough time and resources because before being a mom, I felt like I had no time, or I didn’t have enough time for myself. So when I found out about his diagnosis, I kept thinking like, how am I going to take him to his appointments? How am I going to take care of him? And how do we have enough financial resources to bring him to all these specialists and doctors? I was just so scared.
And I also had fears about the future like who would take care of him if something happened to myself or my husband? Like will he be able to take care of himself? I don’t—I just didn’t know.
Looking back, I would tell my old self not to worry. Don’t worry about anything. You may feel nervous and scared but we have a God that can help us through anything. He’s the greatest provider. Maribel, I feel like there’s definitely more worried that parenting challenges, right? What do you think the most rewarding thing is about being a mom of a child with special needs?
Maribel: Raising kids is not an easy task. It takes a village; more so if they have special needs. For me, the most rewarding aspect of being a parent to a kid with special needs is that we get to see, experience, and feel God’s miracles firsthand in our lives. Through Brennan, we see God’s love and power. There’s just so many, like I have a long list of answered prayers. We felt so much closer to God. And this beautiful journey, although it may be challenging, and for others, they may see it as inconvenient. It could be an [unconventional] kind of parenting, but the rewards are so much greater and it outweighs all those challenges.
Acelyne: I love that you said that Maribel! Because like Brennan is three years old now and Jaxson is still one. So I’m still really new to being a mom, how do you find the strength to keep going?
Maribel: If I may share this one experience? The very first surgery. One Monday morning, I received a call from the NICU doctor. Nine o’clock. The doctor told me that they’re going to do the surgery. It’s called exploratory laparotomy. It’s a procedure to open up the abdomen to fix or find out what’s causing the problem. Brennan was few weeks old. We didn’t know what the problem was. He kept vomiting. That Monday morning when they called us, [they said] they’re going to do that surgery on that same day. I was bawling. And I thought I’d lose my mind.
I was so overwhelmed. I didn’t know what to do. My husband was already at work. I was by myself. I ran to our living room. And then I knelt down and prayed. The doctor was even worried about me because you know, when she was telling me about the procedure and explaining my sense of hearing stops, because you know, like, she was like, blah, blah, blah, blah. But all I heard was there’s a surgery, you know, they have to do the surgery.
During the preparation, I remember the nurse asked for the waiver for me to sign, right? Because I couldn’t sign it. I couldn’t take any longer. I ran to the restroom. And then I grabbed a clean toilet seat cover. I laid it flat on the floor. And then that’s where I knelt. I said—I just surrendered everything to God. It’s His will, whatever happens, you know? “Just give me the strength that I need.” But there’s hope. I mean, I’m praying that he’ll make it.
And then after that, I went back to his room and then signed the waiver form. And then yeah, that they did the surgery after two or three hours and then he’s back. That first surgery, and then here comes another one. And then the third one. He was under the knife nine times. You thought it would get easier. No. Another major surgery was the heart. But thanks be to God. I mean, because of His mercy and compassion, look at Brennan now. He has come so far and we’re so grateful to our own Almighty God. So what’s the most rewarding aspect of being a mom to a child with special needs?
Acelyne: I feel like the most rewarding part is seeing him grow and seeing him like smash all his goals, even though it may take him a little longer than typical children. Seeing him accomplish one goal and how happy he is, it just makes me so happy. Seeing him grow within a community that loves him. So I’m so happy that he gets to grow up inside the Church Of Christ because the community inside the Church is so strong and supportive, I wouldn’t know what I do without all the brothers and sisters in the Church Of Christ. They love him so much and I love seeing how much happiness he brings them, and to know that he’s not a burden.
So that’s that was also one of my fears that he would be a burden to myself or he would be a burden to me and Jones, my husband, or my family, or be a burden to other people. But it was the total opposite. He’s not a burden he’s a ball of love. He’s the total opposite of a burden he’s such a blessing to us and such a blessing to our family and He’s truly a gift from God, that’s a great source of happiness to us.
Special needs parent burnout
Acelyne: So, Maribel how do you overcome special needs parent burnout?
Maribel: Okay, this may sound cliche, but I strongly believe that you cannot pour from an empty cup. So, we have to take care of ourselves, so we can take care of others, right? So how can we take care of others if we’re sick? So we have to be physically, mentally, and emotionally fit, with proper nutrition. Also, I try to squeeze in exercises.
We cannot underestimate the value of “me time” because our needs matter too! Our needs are important too. Also, communication with the spouse or family member. And it’s also an important thing is [to] find a support group. Try to look for resources that are offered within the community. And most of all, pray. Pray that because we have God as our best friend. He is always ready to listen 24/7. Okay, how about you Sister Acelyn, how what do you do to overcome the parent burnout being a special needs parent?
Acelyne: Like you, I absolutely believe that “me time” is so important to overcome special needs parent burnout because, I mean, almost every day we go through therapies and driving there and making sure he making sure Jaxson eats and gets changed and cleaned before therapy and after therapy. [My husband and I], we make sure that we set aside some time to go for a walk just to go outside and get some vitamin D and feel the sun on our faces because we’ve been indoors taking care of Jaxson all day. I love that my husband also allows me to get a massage. I mean simple things like that or just [getting] boba after a therapy like that really helps us out, so we don’t get burnt out. Setting aside time to meditate at the house of worship, and making sure we have that moment of peace and silence, meditating and resetting our mind and our bodies and really get rid of all that built-up stress that we may have throughout the week and be renewed.
Another thing we do to overcome special needs parent and burnout is asking for help when we need it because really, taking care of a child with special needs, it’s like another a whole other job, it’s like a full-time job. So whenever someone offers us help, and we need it, we make sure to take it because we might overstress ourselves or might be mentally drained, because of all the appointments that we have to go. And we make sure to treat ourselves with anything that we like, like even just doing some, doing a hobby that we like to do. So for me, one of my hobbies is reading. So even just a few moments to curl up in a corner and, and read a book or learn a new language, something fun. Spending time to go out for a dinner every once in a while, that that really helps us.
My prayer for Jaxson is for him, to grow up strong, for him to know that he’s loved. For him to understand his purpose, and for him to know that he has a purpose and he’s not worthless. I want him I pray for him to grow up knowing God’s words, to grow up knowing that he’s a loved servant of God, and a loved child of God. I pray he will always be protected from any harm and danger and to grow up with good health and, and the ability to serve with all his heart. That’s my prayer.
Maribel: My prayer for Brennan is that God will give him the strength to overcome all these challenges, because there’s just so many unanticipated health issues with Brennan, you know, like just a simple cough and cold for a typical child to recover for a week, but with Brennan, it may take few weeks, two months, and sometimes it could even mean hospitalization. We fear that you know, like, because hospital life is difficult. Every day we do not take for granted every single day that we are home. We are thankful we are home, because that means he’s healthy. We are home, that means we are not at the hospital. And [in] our prayer, we are thankful to God because we have him. He’s alive. He’s been through a lot, but he is with us. God continues to entrust Brennan to us and that is a very big blessing to our family. This journey, it’s challenging, but it is very beautiful. It’s one thing that I would not trade anything in this world.
Mariel: Thanks to Maribel and Acelyne for sharing tiny snippets of what life with a special needs child is like. You might be surprised to find out that it sounds similar to your own parenting journey, even though you may not even have a child with special needs. Parenting a child with developmental or intellectual disabilities used to be very stigmatized, but thankfully people with disabilities are more advocated for in society today.