Let’s talk about special needs fathers this time.
It’s almost Father’s day and what better way to honor them than to put out this post on how they are as partners of their wives in taking care of their special kids.
We all know that there are lots of struggles in raising up kids, more so if they have special needs and these become challenges that are easier to hurdle if both parents are present for their kids.
Thus, we cannot underestimate the help that our special needs fathers do.
I don’t know if you agree that dads give more tough love than moms, and I don’t know if they are really tough even with their special kids.
Let’s all find out, shall we?
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Jojo and Nathan
A very responsible family man, Jojo is a full time nurse who likes to go fishing and do some basic carpentry in his free time.
Married also to a nurse, they have 2 kids, their eldest daughter is in medical school and the youngest is Nathan, “the most special in the family, ” according to him.
Tell us about Nathan
At present, he’s still having a hard time expressing his needs.”
When did you know that Nathan was special and how did you react?
” Actually, I was in the Philippines attending to my sister’s funeral when I learned that my son had questionable genes and that they would have to do some studies later to confirm his diagnosis, since he had the features of Down syndrome.
It was like a double blow on my part, attending to my sister’s funeral and my son having Down syndrome, at that time in my life.
And I was helpless because I was in the Philippines and my wife was still in the hospital since she delivered earlier than expected. I couldn’t get to the US in time for the birth of my son and I couldn’t miss my sister’s funeral. “
According to his wife, Diane, it was really difficult for him to accept at first. ” Jojo was given a parental leave for a few weeks, he just can’t function and think straight. I had to encourage and push him to get up and move on.
It took him probably 2 months to accept everything that happened to us.”
Is there a special activity that you bond together as dad and son?
” We like to watch TV and listen to music together. We also love visiting my sister and her husband who lives in the same city as us. “
How do you share with your wife in taking care of Nathan?
” We take turns, since we’re both working 12 hours, on our days off (we alternate our work schedules, too so that there is always someone present for Nathan) and I bring Nathan to let him attend to some activities, like soccer and basketball with the other special needs kids via special olympics.
I also like to cook and Nathan loves to eat ( and me ) so, this is one thing that my wife loves me doing for Nathan and our family.
When Nathan was younger and starting to be potty trained, I really tried hard to let him go to the bathroom on specific times of the day and before I went to work and it all paid off.
He has been fully toilet-trained since he was around seven.”
Do you have any fears or concerns about his future?
” Yeah, since we’re getting old and we don’t know what will happen to his future.
Luckily he has a sister who loves him very much and willing to take care of him.
Hopefully by that time he can express what he wants and his needs and will be able to do some daily basic living activities. “
Does he have any big challenges at the present and how do you handle them?
” Nathan doesn’t talk and when he doesn’t get his way he stomps upstairs and won’t come downstairs for awhile or unless someone goes to get him.
We put a certain time limit and if he doesn’t come down, we check on him or we turn on one of his favorite shows so he will hear it and come downstairs.
He also hurts people, especially if he’s in an unfamiliar environment and can’t communicate what he wants.
To amend that, we just talk to him in a nice way and explain that hurting people isn’t what you’re supposed to do.”
Is there an activity that he excels?
“He doesn’t have any noticeable talent yet. He just enjoys watching TV, looking through his books, playing with his favorite stuffed toy snake, or listening to music.”
How does Nathan make you and your family happy?
” We are glad when he is enjoying his shows and is dancing with the music that also occurs in the program.
Sometimes whenever he listens to simple things that we say like,” Help us prepare the table,” and then does what we say, we are happy.
We also enjoy when he shows that he is responsible, like he brings the laundry basket back to its proper place and when returning home from school he will take off his shoes and socks and place them by the door where they belong without any prompting from us.”
How do you celebrate Father’s day?
” Simply, we just have a family dinner together at a restaurant. Or enjoy food with extended family. “
How did Nathan affect your views on life?
” Sometimes, we still question why there is such a thing as a special kid.
We wonder if everybody should be the same with their knowledge and growth.
Many times we ask why do we have to take care of Nathan with things, when other kids can do them by themselves. “
Any advice to other special needs dads on how to take care of their special child?
” Just be patient with everything that they do.
Sometimes they get frustrated when they can’t do it the first time or within a certain amount of time, so just explain how to do it with simple words, try to make eye contact, and get down to their level.
This shows that you see them as an equal and are not looking down on them (as opposed to standing) giving off a commanding vibe.
Also when interacting with them or if you’re trying to get their attention, do it in a playful manner.
Lastly, spend as much time with them as possible. “
Any other experiences with Nathan that you want to share?
“He loves to stay with us when it’s bedtime and is reluctant to leave our room to go to his own bed, but because of his bad habits when sleeping (wanting to occupy the whole space) we have to make him go to his room.
Lastly, he loves the water but sometimes when we go to the beach, it’s a struggle since he doesn’t want to go home.”
Arnold and Alyanna
A hardworking dad juggling two jobs, Arnold is a caring father to three kids with Alyanna as the youngest.
As busy as he is with his jobs, he still finds time to fix their house, ( his hobby ) and when he starts a project, he doesn’t stop until it’s done.
His latest project was making a washroom in their basement from scratch.
A self-made handy man indeed!
And a man of few words.
Tell us about Alyanna
” My daughter Alyanna is a sweet little 6 year old child, with Cornelia de Lange Syndrome.
She just learned how to walk confidently on her own and she has been roaming around our house lately.
As long as her tummy is full and she has enough sleep, she is just full of energy and smiles. “
When did you know that Alyanna was special and how did you react?
” At birth, we were told that Alyanna might have Down syndrome, so work up was done right away, but eventually, she was diagnosed with Cornelia de Lange syndrome.
It was easy for me to accept her condition, after all, she is still our sweet little girl. “
Is there a special activity that you bond together as dad and daughter?
” Singing and playing the guitar is our favorite bonding activity.
Alyanna really listens to me intently when I do this.
When I feed her, I also let her watch Nursery rhymes in my cellphone and she loves it.
She smiles and laughs a lot!”
How do you share with your wife in taking care of Alyanna?
” We work alternate shifts, but my mother who is visiting, is having the bigger part of taking care of Alyanna these days.
I’m a hands-on dad, so I have learned how to change her diapers and give her food to eat. “
Do you have any fears or concerns about her future?
” Yes, I just hope that when she is older and we are not around anymore, her siblings could help her in whatever way.
We have been saving some money too, for her future care. “
Does Alyanna have any big challenges at the present and how do you handle them?
“ She is non-verbal, so communication is a big challenge, and she is still very dependent on us for everything, so our love for her and lots of patience do the trick. “
Is there an activity that Alyanna enjoys doing?
” As of now, she likes to walk around the house and listen to me while I play the guitar.
She also loves watching Nursery rhymes in the cellphone or the television.”
How does Alyanna make you and your family happy?
” She is so amiable that her smile and laugh is contagious. ”
How do you celebrate Father’s day?
” Usually I’m working on Father’s day, but my family finds time to celebrate with me, like we eat out in a restaurant. “
Was there an impact to you when Alyanna came into your life?
” Yes, indeed I became more resilient to the challenges of life.”
Papa Erning and Pangga
My dad is caring in his unique way, which I call tough love. He is a disciplinarian, especially for my brothers, who when they were younger, would challenge him in some ways.
Even Pangga then had challenging times when Papa would reprimand her for taking too long in the shower and wasted lots of water.
Papa has mellowed over the years, but his grandchildren would still get his “tough discipline,” from time to time when they would sneak those ice candies from the fridge that were for sale.
Oh well, I guess Papa’s tough love has made us learn how to discipline our very own kids.
When did you learn that Pangga was special and how did you react?
” When we learned later that Pangga was special, we took extra care of her, especially giving her breastmilk from her mom and some milk supplement, too.
It was easy to accept that she is a gift from God and a lucky charm for our family.”
Share with us Pangga’s growth and development.
I don’t exactly remember at what age Pangga learned how to walk and talk, but I’m sure it was later than her other siblings.
When she was big enough, my wife’s aunt took care of Pangga because there were 4 other younger siblings after her.
Every afternoon, they would go to church, so Pangga learned how to sing the prayer ” Our Father,” in the Filipino version.
Eventually, she learned how to talk and would answer simple questions.
She loved to sing, she had a good voice, thus singing became constant for her. “
How did you share with your wife in taking care of Pangga?
I would help the best that I could, like prepare her bed, food, and give her medicine when she was sick.
We are a big family, and although there were nannies to help, I was always there to support my wife in whatever way I can. “
Do you remember any struggles or big challenges as she was growing up?
” Nothing serious when Pangga was growing up, but just before her demise, she got sick with slight fever and wouldn’t eat for about a week until the local doctor treated her for a urinary tract infection.
Later she was brought to hospital because she stopped peeing. Her tummy was observed to be swollen after a day and was advised to be brought to a tertiary hospital in the city where the doctors found a serious abdominal infection due to ruptured appendicitis and pneumonia.
Her sisters brought her to the city, and we stayed behind in the province because my wife and I are already quite frail for our age to travel.”
Did you hope that Pangga would grow old?
” From early on, we knew that people like Pangga don’t really grow old, more like they pass away in their 20’s, so we feel that we were lucky to be with her until she was 46 years old.
Though we were unprepared of her death, somehow, we were comforted that she is now in heaven without those pains and suffering, and looks upon us from up there.
We know that she is now an angel looking after us.”
How did Pangga make you and your family happy?
” Being special, we always believed that she was the lucky charm in our family.
Her innocence and her no nonsense humor made us happy.
Just listening to her songs with some funny lyrics made our day. “
Related post: Luxury on Mother’s day…our Special needs moms deserve it
What do you miss most about Pangga?
” Pangga’s presence in our family is missed so much since she was considered the lucky gem and our home felt so empty without her, especially for the first few months after she passed away.
It has been almost five years that she’s gone and we have accepted it and used to not seeing her around anymore, although her memories will always stay with us.
Of course, when we see people like her, we do really miss her!
She was the first ever member who has gone ahead, in our family of twelve.
Our home used to be somewhat busy with her presence because she was considered the youngest, and mentally she was like 5-6 years old only, thus we have to remind her always about lots of stuff like, to wash her hands before and after eating, after using the toilet and to take a bath and limit her time in the bathroom.
You know if you have kids around the house, it always feels busy and chaotic.
We also miss her singing that even in the middle of the night, she would sing when she couldn’t sleep.”
How do you celebrate Father’s day?
” If we have enough budget, we prepare food for family and extended family.
Usually our kids from abroad call us on this special day and sometimes they give me money to spend for some celebration.
Just knowing that my children are all successful in their careers and married life, with the exception of my other special child ( he is now 56 but mentally, like 7-8 only ), my wife and I are happy that we have raised responsible kids who always see to it that our medical needs are met and are always willing to help us out in whatever way.
For me, I don’t need big celebrations for Father’s day, my children’s greetings and well wishes are all that matters.”
There you go, three special needs fathers and their experiences in raising their special kids.
Their support and help to their wives cannot be ignored, always appreciated.
To my brothers-in-law, Jojo and Arnold, and my dad, Papa Erning, thank you for all that you did and are still doing for Nathan, Alyanna, Pangga and Batch.
To my other brother-in-law, Aries, whom I failed to interview, your care and love for Mark is much appreciated, as well.
Related post: A Mother’s Unconditional Love.. It is for Real
It’s really challenging raising our kids, more so if they have special needs, but of course they give our families pure joy and bliss with their innocence.
Happy Father’s day to all our special needs dads out there!
Hey, special needs dads, what is your best bonding activity with your special kid? Please share with us.