A Dad's Perspective on Raising his Child with Cerebral Palsy.

Jae and Ant Puente of the podcast Let's Discuss It, sit down to discuss the male perspective of raising a child with complex medical needs.  This episode was followed by the brothers interviewing Marsh Naidoo and that episode will be aired shortly.  So subscribe for latest updates @ https://podcasts.apple.com/us/podcast/lets-discuss-it-w-jae-ant/id1482589539 

Thank you for listening and be sure to read Jae Puente's  honest and heartwarming blog at https://www.raisingkellan.org/

“Where do I start when it comes to raising a child special needs...

No words can describe the amount of love, patience and understanding that Noah allowed me to learn by raising him. From his daily routines, G-Tube feedings, many weekly therapies Noah has never let a day go by without smiling.

Having a child who can’t verbally interact with you, or hug you or ask if you get him a glass of juice breaks my heart. Just the simplest of things we take for granted that our kids do. I begged and pleaded to God to please let me see Noah walk one step alone, stand up alone or even something as simple as pick up a fork and eat by himself.

Noah Puente

I’m not here to question why..I’m here to stand with him so he won’t be alone. I’m hear to speak on his behalf. I’m here to take those steps with him on this journey. So cherish your blessings and be patient with us parents with disabled kids. We are doing our best daily.

Don’t be afraid to say Hi to Noah. He loves to hear kids laugh, he loves to hear joy and compliments.

So is it hard? Yes.

But he’s worth it.“

About the Author:

Jae Puente is Noah's dad and cohosts Let's Discuss It with his brother Ant Puente. This amazing podcast creates a platform for open discussions on relevant topics.

Here is the link to the podcast https://podcasts.apple.com/us/podcast/lets-discuss-it-w-jae-ant/id1482589539. The brothers can be followed on facebook @ https://www.facebook.com/LetsDiscussItWithJaeAndAnt/

Transcript

Marsh Naidoo (00:08):

Welcome to this episode of Raising Kellan, the podcast to motivate, inspire, and educate parents, raising kids with special needs. I am your host, Marsh Naidoo, and today I'm sitting down with Jae and Anthony Puente brothers and co-host of Let's Discuss This. Welcome to the podcast guys.

Anthony Puente (00:31):

Yes, thank you. Thank

Jae Puente (00:32):

You for having

Anthony Puente (00:32):

Us. Yes, I thank you.

Marsh Naidoo (00:34):

I'm gonna start with a real serious question, Anthony. Okay. What's it like working with your brother

Anthony Puente (00:40):

<laugh>? Oh, well we have our good days and bad days. I'll say that sometimes I can't even get a word in, but I always say that he's the Batman and I'm the Robin. But sometimes I don't wanna be Robin. I wanna be Superman, <laugh>. But no, it is really good because we're very good. We think alike at some things. Some things we do agree me, disagree on, but we like the same things and we can discuss it. We talk all the time, so it's nothing new. It's just a microphone in front of our face. That's pretty much it.

Marsh Naidoo (01:11):

So what was the fire to start? Let's Discuss It Jae

Jae Puente (01:16):

So I started, Let's discuss it because I'm really big in the talk radio. I listen to a lot of Joe Rogan. I listened. I used to listen to the old Howard Stern. Howard Stern now is a lot more serious, so hearing him now, it's a way better experience to listen. But I think right now talk radio is the future. I think a lot of people are getting away from the music and actually want to educate themselves. There's a lot of crime story podcast, there's a lot of history podcast and there's a lot of people going through difficult pregnancy podcasts. I've seen people who have equality podcasts, Everything's everything that's a topic is becoming a podcast to help educate and spread awareness. And I felt like I wanted to have an opinion, but I also want to gain an understanding from things I don't know. So I wanted to start a podcast and bring people in with the expertise of what I want to know and have an open discussion with it

Marsh Naidoo (02:11):

Guys. Cerebral palsy is a complex medical condition that impacts all three of us. And as a female, I know me and other mothers just talk about stuff, but guys very rarely do. So. Today's podcast, I would like to gain the male perspective of you and as an uncle and a dad of a child with a special needs. That's fine. So let me start with your first. Okay Jay, what went through your mind when you received the diagnosis? Noah's diagnosis?

Jae Puente (02:48):

So when Noah was born, he was very sick early on, premature stated in NICU, in Nashville for five to six weeks I believe. Or actually it might have been even less maybe for to five or six weeks. And really in all honesty, I wanted him just to get better from that cuz premature babies have the tendencies to being sick. But they also overcome later in life, later, I think around his one year, a year of age, we started seeing that he was delayed in everything. Wasn't trying to reach for things eye coordination, wasn't correct wasn't attempting to crawl, wasn't attempting to walk, wasn't attempting to do anything. And so when we got the diagnosis that he actually has something called spastic cerebral palsy it was a little devastating because it is hard to think that your son won't do things that other kids can do. It's hard that Jude wouldn't be able to push Noah over and Noah run after him to push him back. I think it was tough to know that I might not see him dance at a wedding or I might not see him go to his first pool party, stuff like that. It runs to your mind. But you have to stay optimistic. You have to think that the best is ahead. I think it's a little difficult still because you get a daily reminder what your son is going through. I think that's the hard thing about it.

Marsh Naidoo (04:17):

When did you tell Anthony about Noah's diagnosis? How did that happen?

Jae Puente (04:24):

I told him and a bunch of my family all at the same time. I said, Hey, we just got word back that this is what it is. I don't think they really knew what it was like. I didn't only heard of that term ever so often. Didn't really hear about it much. Not a lot of people. We grew up in the town, we grew up in Crockett. Did you ever see anyone with a disability like that? So it was a lot of researching, it was a lot of looking into the worst thing you can ever do is get on the internet. I believe they make it <laugh> make things so much worse. So I think when I told my brother he was hurt for me, I think he was hurt. I think a lot, it hurt him hard because I mean it's not easy to see your sibling go through an emotional state. I think just for him to see me, which I'm not really an emotional person for him, but for him to see me go through something so troubling, I think that hurt him too, in all honesty.

Anthony Puente (05:26):

Yeah, it definitely was because like Jay said, I didn't know I was 16 years old if I wanna say 16, 15, around that area. When I found out about Noah and I was hurt because what Jay said, that's stuff that goes to your mind as a parent. But I'm an uncle and it was exhausting because they did have to go to Nashville, they did have to do all this and I can't really explain, but I was exhausted for him already and what he was about to go through in his life.

Marsh Naidoo (06:04):

I totally understand. I do. Guys. Jae, gimme an idea of what your day is.

Jae Puente (06:14):

Usually if we're pertaining to my day with Noah I wake up, usually he's awake before me. He wakes up early. I don't know where he got this from because my mom wakes up at five in the morning. But then so does my son. So he'd wake up at five. The first thing you do is you check his diaper you check, make sure he didn't wet the bed, which he's kind of prone to that. If you feed him late and he falls asleep, check his diaper, check his G-tube, make sure it's all intact. Cuz at his age he's more likely to grab it, grab his G-tube. And he doesn't understand that when he pulls that it's only getting worse cuz he's one of those he grips and then he just doesn't let go. One time he grabbed his hair and then realized that he was the one grabbing his hair. So he grabbed his hair and he kept pulling and the more he pulled the harder he cried. So it was really just a routine check of checking to make sure everything, him being comfortable with the new pamper, fresh clothes setting up his feeding, getting his bags ready, getting his water for his flush ready medication setting him up, making sure he's not congested. Cuz one thing about cerebral palsy kids that I've heard about is respiratory issues. They decline as they get older if they're not able to be more functional, more active.

(07:38):

So I really check on him a lot more often in the evening time or in the morning time too when he lays down. Cuz with the weather change and people, everybody getting sick, a cold to him or being congested to him is harder on him than it would be just a regular kid. So checking him, making sure he's all good and just kind of keeping him comfortable throughout the day. Playing his favorite shows. But during the week he has therapies, he has aqua therapy, he has occupational therapy, he has feeding therapies stuff like that to the extent. But for the most part he's really cool. He's really laid back. He likes to laugh, he likes to hear his shows. Anywhere you go, you gotta take his wheelchair. So he is comfortable.

Marsh Naidoo (08:24):

<laugh>. Thank you Jae. Now listen, as a dad of a child with special needs, what do you want other parents or other folks to know?

Jae Puente (08:36):

I think the one thing I would want them to them to know that if we're walking around, be courteous, be a little courteous. We know what we're dealing with. We don't need reminders, looks and just be sweet. Noah's really good. I'm sure any kid with cerebral palsy or autistic or anything to that extent that has a disability down syndrome, they want to be loved and they want to be spoken to politely. Just say hey to 'em and just be very kind to, I feel like people who have special need kids, their day by day is very underestimated. I think that not a lot of people see what happens behind closed doors of dealing with, you know, come home, you can go home and sit down and watch tv. It's not that easy for us. You know, gotta make sure that they're being fed. You gotta make sure that they're, they're not sore from sitting down most of the day.

(09:33):

You know, gotta make sure you lay 'em down vertically. You gotta give 'em a bath. Giving a kid with CP a bath is probably the hardest thing cuz they get heavier. If you don't have a walk-in shower you have to lay 'em down or you got that bath chair and it's not that easy. It's hard cuz they get heavier as they get older. So I just don't underestimate what someone's gone through. I feel like just be kind and just be courteous to that end. As far as what people may misconceive of what having a special needs kid would be like.

Marsh Naidoo (10:05):

I think if there's anything I want other folks to know is please do not park in a handicapped spot. I used to absolutely have to. I do not block me on my way out, please. That is what I want you guys.

Anthony Puente (10:20):

<laugh>

Jae Puente (10:21):

Absolutely never park in the handicap spot. Especially if you see a wheelchair rack behind the vehicle. We don't have one. Do you have one of those?

Marsh Naidoo (10:29):

Not yet

Jae Puente (10:30):

Working on it. I wish I need to get me a handicap sticker because it is hard to pull back, take a truck all the way to the end of the parking lot because you know have nowhere else to park. And then you got a kid with a wheelchair, you gotta walk him all the way that way when really he's entitled to be closer in that closer spot. So yeah, I completely agree with you on that one.

Marsh Naidoo (10:53):

Anthony, as an uncle, what would you like other folks to know?

Anthony Puente (10:58):

Same thing I've seen being with Jae and Noah. People look, people stare. I think that is very hurtful. I could say it's probably very hurtful to Jae if he sees it. It's hurtful for me when I see people look at Noah or turn around and whisper it to somebody that's next to 'em. They might be saying good things might be saying a bad thing. You never know. But I think that's a big challenge. There's no need to stare. No one's just a regular child. Well you know what I mean? The aspect, He's a child so he shouldn't be looked out any other way. And just the same thing. Just not have sympathy, but just know that what they're going through is harder than what you can ever imagine. So I believe that's a good thing to tell people, especially if you see stuff like that on public. S

Marsh Naidoo (11:48):

Well come up to me and ask me what's going on. You know what I mean? Just don't whisper. Yes, just ask. I mean it was very hard for me I think in the beginning to explain. But I mean that's what I'm teaching Kellan right now. When someone asks what's going on? Or why are you using a walker wheelchair? I said, Kelin, you have to own it because if you don't own it, you are not gonna be able to move past it. <affirmative>. Absolutely. And now Kellan says, I have cerebral palsy. Yes. And that's a matter of fact, as you said, you don't expect sympathy, but you don't want anything in return. Exactly. But that's

Jae Puente (12:33):

Just silent courtesy. That's it. I mean really that's it in all honesty. Like you said, Kellan says, Oh I have sir. But that's amazing that he has acknowledged his disability and is able to express it to people who are curious about him. And I have Noah's in a wheelchair in a couple of years, he's gonna have to fly his wheelchair ever. Cause I'm gonna put all kinds of lights on it. <laugh> and wheel lights every time his wheel spin is a different color. So if this is something he's gonna live with, I want him to have the best of it, embrace it and have fun with it. Now look at it as a disability, but maybe a privilege.

Marsh Naidoo (13:08):

So guys, in this journey we are walking in together. What does this time of the year represent you? And let me start with you first Anthony. What does this time of the year represent to you?

Anthony Puente (13:24):

My faith, when I think of Christmas, I think of Jesus obviously. And I believe this is just a time to be thankful, to be with your loved ones and your family members. Because a lot of that, the comfort that you get if you're a parent or if you're related to somebody that is dealing with a child with disability, is the support of your family to go with it. Because they can help you at times. They can definitely help. I know mom and dad has helped Jae times when Jae been exhausted and I know Jay's very appreciative of that. I've helped too. And I think that's the biggest thing is just having your family support. And this is definitely the season to be thankful for

Jae Puente (14:03):

That. Absolutely.

Marsh Naidoo (14:06):

Jae, what does this time of year represent for you.

Jae Puente (14:12):

Another year with Noah?

Marsh Naidoo (14:14):

That's

Jae Puente (14:15):

It. I think every Christmas I have with him is a blessing. We had an early Christmas today with my girlfriend's family. They came by today and he was able to open up gifts with the other kids and it was just, it's inviting that he was with his brother and he was able to do stuff like this. And it just makes it when I can have memories of him at every Christmas that I have with him. And it's just, that to me has always been a good thing for me as far as with Noah. So that's really what this time of year means to me.

Marsh Naidoo (14:50):

Guys, I wanna thank you all so much for answering those questions. I have another quick favor to ask. Okay. Just as I said, from the male perspective, if you all don't mind getting together and writing just a half a page blog, just half a four page of the guy's perspective. And I would put, I'll put that on my blog side. And yes, as I said, thank you so much for sharing your perspective with me. Thank you for having me. Yes ma'am. Thank you. So guys, until we see all the next time, remember to get to the top of your mountain. This is Marsh Naidoo signing out.