Mom of Special Needs Child Spreads Light on Health Care Flaws & Struggles in America

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While many of us have volunteered and worked with special needs children and adults in the past, those few hours we spent and felt so good about ourselves after completing,  were exactly that, just a few hours or maybe days. The real MVP’s are the parents and care providers for whom breaks and days off are seldom. They are not looking for signatures for community service, service learning, or some church mission. They are doing for those they love and want to see the best for.  Libra Hicks is an advocate for special needs families and the founder of Our Children’s Story, a resource hub for parents of special needs children.  Hicks is organizing the Purple & Green Gala to raise awareness of Epilepsy and Cerebral Palsy November 4, 2017 in Atlanta, GA.

Fancy:  What inspired Our Children’s Story?

Libra: What actually inspired me is of course my son-you know, who has special needs, but I was also really inspired by the lack of resources of services and the connection in the community. It’s almost like when you come across resources, people are not so willing to share them. Coming across the resources is hard to do, and I wanted to be able to be a resource location. So when I come across resources, I want to be able to share it without families having to go through a headache to get it. Typically, in order to get quality resources and get help, you have to hire an advocate, and an advocate can run anywhere from $500 to $1,500. Usually within this community, we don’t have those type of funds to spend that, and so we go without because of that.

Fancy: If you don’t mind, can you share what it has been like raising your son with special needs?

Libra: Absolutely, so my son is 11- years old, and he has cerebral palsy. He also has epilepsy and a host of other challenges. Raising him has really been a challenge. There was a point in time when he was first born that I didn’t have the money needed to take care of him and applying for government assistance is a real headache. It’s almost like a hit or miss. If you don’t know the right advocate, you will almost certainly be denied, and you will have to go through an appeal and all types of stuff, and it’s going to be some emotional drainage. There are times I questioned my ability to take care of him, and I questioned whether or not I should put him up for adoption or give him to a family. I didn’t have the income to take care of him.  People really think that you can go out here and apply for these resources and get them with no problem, and unfortunately that’s not how Georgia works. I don’t know about other states, but Georgia doesn’t operate like that.  There have been times when I have been denied SSI, and it took me three years, to get close to getting it. Then once I got it, I could only work a certain amount of hours. I couldn’t make a certain amount of money, because if I did, he would lose his benefits. So we were in poverty for a very long time. There was a time when I brought him home from the hospital with his challenges, and we were close to being foreclosed on our home, no place to go, no relatives- our family didn’t take us. I really had to struggle and push myself in order to keep going with him. If it wasn’t for my husband, I would have given him up for adoption, because being able to take care of him financially at that time was a strain, and it still can be a strain.  Fortunately, I have been able to get the resources and benefits, because I was blessed with someone sponsoring me and paying for the advocate.  Many families go without because at the end of the day, it’s a money thing, and if you don’t have the money, you don’t get the help. It’s just so unfair. I do my best to try to take my experiences and breathe life into other families, letting them know that they can do it. There was a point and time where I completely lost hope, because it was kind of I was like, “oh my god, my son needs this breathing machine, but I have to pay rent. “ It’s almost like how do you choose one over the other, because you need both, but at the same time my son needs his life. So I paid for the feeding machine, but now I am taking the chance of being evicted and on the street. It’s a real struggle, but I want to be that voice, because there are a lot of voices out here, but a lot of people that run those organizations aren’t really living that life. A lot of people can’t really relate, so I try to do my best and give the resources to people and I find ways to pay for it and be able to do so.

Fancy: Tell us about your organization, Our Children’s Story.

Libra: Our Children’s Story has been in existence since 2010. We started out as a support group where moms would get together. We would vent, share things, and bounce ideas off of each other. From then the support group kind of grew into a resource website. Unfortunately at this time Our Children’s story no longer does the support group, because it is a matter of the moms and dads being able to find time to attend the group. Since I have transitioned from the support group to a resource website, I now host different events within the community. One event being the Mommy Makeover where I take a mom who raises a child or an adult with special needs, and I give them a whole makeover-from  hair, makeup, clothes, photos and kind of let them know you can still love yourself and breathe life into yourself even though your child has these issues. You can still love and take care of yourself.

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Fancy: Can you share a little about the purpose of the Purple & Green Gala and what guests can expect.

Libra: Purple represents epilepsy, and green represents cerebral palsy, so that is why I call it the Purple and Green Gala. Guests can expect entertainment, food, and a silent auction. Also we will be giving away awards to people who have made an impact in the special needs community whether it is through advocating or working on a political level to try to get certain laws pushed through or changed.  You will be able to meet my son, Anthony Jr., who I call Mook. I will be there, my husband will be there, and there will be other sponsors in attendance that help me put together the event.

Fancy: What do you all currently need or how can others help?

Libra: What we need right now is ticket sales. Tickets sales are important, because the funds will be filtered back through Our Children’s Story, so that I can continue to sponsor our moms for their makeovers and the inclusion camp- oh, and also free classes. So we need tickets sales and additional sponsors. Sponsors get their logo on the flyer and on the Purple & Green website. Because the event is at a brewery, they will also get drink tickets to get drinks that are brewed right at the location. Packets start out at $55 run up to $150, just so I can get funds needed to help support this community. Case in point, I had a mother of a sick child with Down’s syndrome, who reached out to me to see if there were any funds, because she was about to get evicted. It was one of those situations where you have to choose medical equipment over rent and / or bills, and because there are lacks of funds with Our Children’s Story, I wasn’t able to give her the money, so she could at least get a hotel room. The donations and tickets sales are very important so we can support these families.

Fancy: Do you have any other upcoming projects or events you are working on?

Libra: I’m also putting together my first inclusion camp which will take place in 2018. It will include typical kids and kids with disabilities and inclusion play.  I think that that exposure is important. Just because you have these differences, doesn’t mean you have to separate from someone else.

We are also putting together a cruise, which it will be backed by Autism on the Sea . This way we could have families of children with disabilities travel and still have the rest of the support they need while on vacation. Disability is really big to me. I have been doing it since 2010, and my plan is to be here for as long as I can.

Our interview with Libra not only shows how deep a mother’s love is, but also just how bad of a condition health care is in here in America.  If you would like to attend the Purple & Green Gala or send donations, be sure to visit the following links below.

https://www.eventbrite.com/e/1st-annual-purple-and-green-gala-tickets-32876045136

https://www.purpleandgreengala.org/

Libra will be on It’s T’Marie Radio Show with T. Marie, August 30, 2017 12-2.  click below if you would like to tune in.

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Written by 

Fancy is the Founder/Publisher/Editor-in-Chief of SwagHer Magazine. She attended Southern University A&M College as a mass comm major with a focus in PR. As a mother of 3, she resides in Baton Rouge, LA. She loves business, branding, Black people/culture/men, simple beauty.