Raising a Child with Special Needs (Episode 59 of #WYFWTY)
In Episode 59 of What Your Friends Won’t Tell You, we explore the challenges, the resources and the game-changing tool that many families with special needs children rely on. This episode, sponsored by Banyan Global Investment Advisors in Boca Raton, is dedicated to Luke Fernicola, a 9-year-old boy with autism who passed away in July.
On Episode 59 of What Your Friends Won’t Tell You, we are tackling the sensitive topic of raising a child with special needs – the joys, the struggles and the major financial impact.
This episode of WYFWTY is brought to you by Banyan Global Investment Advisors, who agreed to sponsor this show because of their Certified Financial Planner Lori Fernicola. Her son, Luke, was diagnosed with autism at the age of four. Unfortunately, he started to regress. By the age of nine, he could not swallow. He was having major, major problems. They did a battery of tests and discovered that Luke had a rare chromosomal disorder. Luke passed away in July 2018.
SUZANNE: I didn’t even know Luke, but I’ve met his mother. Shannon and I did a lot of research and talked with Lori, about this episode. We are very sensitive to this topic.
SHANNON: Please know we’re coming from a place of so much empathy and compassion and love for families that have children with special needs. We are in awe of these parents and the way that they love and what they endure and the emotional capacity they need to have. We are hoping to contribute just a smidge to families that have special needs children. I feel very passionate about what I’ve learned about special needs from having special needs families in my life.
SUZANNE: The interesting thing that Lori said to me, and this never even really occurred to me, but she said, the hardest part is just getting out of the house when you have a child with special needs. Because your house is kind of like your safe place. When you leave that safe place, it can be scary. If you have typical children as well, then sometimes you have to break the family up in order to do activities. I didn’t even think about something like that. The other thing Lori said to me that really opened my eyes, she said she wished people would have a conversation with her instead of just starting at Luke. Lori wished people would have asked her more questions.
SHANNON: How wonderful would it be if I’m in the grocery store with my special needs child and a little person who’s harmless says, “Why is he like that?” I can say “Oh, he has Down syndrome.”
And he comes over and he says, “Oh, you have Down syndrome? Well, I have a truck.”
Now they’re interacting in some way and there’s a connection. I think that would be wonderful – that genuine, authentic conversation where everybody learns, and everybody feels connected.
SUZANNE: The other thing I thought was really interesting that Lori told me was the plethora of resources and benefits that are available to these parents. Lori said Florida has a very good school system and is very good when it comes to children with special needs and a lot of parents don’t know how to navigate it. Lori wants to educate parents about the emotional support that’s out there and the financial support that’s out there, because there are some things that that are real game changers. Lori said she didn’t even know about some of the resources until Luke was much older. We want to share resources that are so important for helping you and the financial aspect.
It can bankrupt you with all of these treatments, especially if you don’t know how to maneuver those benefits. Florida offers a lot of free services.
I think when you first have a child and you realize they have, whether it’s Autism or Down Syndrome or whatever special needs that you’re dealing with there’s sort of this shock in the beginning.
Lori said now that she lost her son she’s realized what a blessing he was and he made her a kinder person. He made her a more patient person.
SHANNON: I think most special needs parents or parents of children with special needs will tell you in the beginning, they did not feel that but now they feel that their child is a blessing. The first thing that happens is an immediate grieving process. What we see is that grieving process can last the entire length of that child’s life, in the sense that it’s always something else that you’re having to grieve. When they’re 15 or 16, people are talking about applying to college and you realize “my child won’t be applying to college.” Although FSU now has a special needs college, which is amazing. It’s a constant grieving process. However, I have heard from everyone that it is the greatest gift that you’ll ever receive and what that child experiences they say they wouldn’t change.
SUZANNE: The other thing is I know some people who have disabilities. I used to work with a man at CBS12 named Mike Caruso, who has some form of muscular dystrophy, and he’s basically been wheelchair bound his whole life, but he is one of these people that never let his disability get in the way of his dreams. He always wanted to be a sports reporter and he started as at CBS12 doing sports reporting, so he was on camera. Then he became a sports producer, then he was he was an editor for many years – a very talented and extremely good editor.
Mike is just this person that no matter what happened to him, he would have to go into the hospital, he would get pneumonia and it’s different than for someone who’s able bodied because his immune system gets so compromised by it, but he would come back to work and have the best attitude. He’s happy. He’s cheerful. He’s optimistic. He talks a lot about his parents and how they always told him that no matter what – he could do whatever he wanted in life and he went on to do that.
SHANNON: I see that with the with some of the families that I’m connected to, is that things turned out better than they had expected.
Now let’s open up Shannon’s Toolbox:
- Live in the moment:
- The first thing our brain does is races ahead. What am I going to do for school? What am I going to do for kindergarten? How am I going to travel? How am I going to afford this? Your head just starts to spin. You never know the resource that will become available in the moment that you need it to be available.
- Ask for help:
- It seems so simple, but when you are a special needs family, you have to understand other people do not have a clue what you’re going through. They have no idea that my daughter took two hours to get into bed last night. That is nothing compared to what somebody goes through with the child that has autism, where they literally might be obsessing about something and or saying the same sentence over and over and over again and doing the same repetitive behavior that could be dangerous for them and you’re trying to dissuade them from that for six hours straight. How would I ever know about that? If you’re a special needs parent, inform and educate, be vulnerable with your trusted people and share with them.
- Take care of yourself:
- You’re so exhausted and you just feel like everything is about this child, but it’s very much like a plane. If the plane loses sudden cabin pressure, put the mask on yourself first and then small children, because if you don’t, you will have nothing to give and the last thing you need to do is become sick or auto immune deficient while you’re trying to take care of a child. Do the basics, drink eight glasses of water a day, sleep eight hours, take a shower. Take care of yourself. You don’t need to feel guilty. It’s self care, and self preservation. If you don’t preserve yourself, you will have nothing to give.
- CARD: Center for Autism and Related Disorders
- Florida’s Early Steps Program
- Consumer Directed Care Plus
- ABLE Accounts
- Special Needs Trust
- Special Needs HelpLine
Now it’s time for the BEST THING EVER!
Shannon found the perfect shampoo for people with curly hair. It’s called Ouidad. You can buy it at Sephora or Ulta. They also have a salon in Fort Lauderdale.
We always like to leave you with a mantra.
Today’s mantra: “I am not alone.” That’s what we want you to take away from this episode. Lori said for her she always felt so alone. She said there are all kinds of other people going through what you’re going through, so don’t be afraid to ask for help.
We want to thank Lori again and Banyan Global Investment Advisors. Don’t forget to sign up for our weekly newsletters.