- Disabilities & the Disabled
Chromosome 16 - Local Community Resources
Not Letting Chromosome 16 Deletion Hold Her Back
Some of the first things that you can do as a family is talk to your hospital where your beautiful child was born. Luckily we have a Children's Hospital in our major city nearby. My daughter was born and a few days later she was transferred to the children's hospital for further treatment, and we are blessed that they recognized the signs. But children's hospital and all their wonderful workers was a one stop shop for referrals and assistance for what do we do next. Yes we can go online and look and find other parents that are going through the same thing but sometimes, something like this, which can be so devastating to a family, it is nice to know that a local place is available to talk to someone in person. Call, visit and ask around. Call different hospitals and ask if they have a special department or brochures about various different programs available.
Go into a pediatrics doctor’s office and pick up one of the free magazines. I noticed the same magazine kept showing up every time we went to a specialist and I saw it at my own Dr.'s office. It was a kid’s magazine with different things available for children and things to do when you don't know where to turn. I asked my Dr's office how long they had such a magazine and they said forever. I just never noticed it before until I needed it. I feel bad, when I think about the other world outside my own. Sometimes we are all caught up in our own world that we forget that we have to share this earth with other families. I am more observant of things and I try to donate when I can to help all causes instead of saying no. My daughter has benefited from some great local programs that would have otherwise cost an arm and two legs but we qualified for reduced or free services. We have to take her to a specialty learning center 3 days a week that is in another city not too far away, but it’s sponsored by donors and it has helped her tremendously. We wouldn't of never knows about this program if it wasn't for our local children's hospital.
A lot of times you will see advertisements for special needs programs, or developmental programs for children. These are fine, but check with your local nonprofit agencies first. Every city works differently so I can't list the facilities that are available for me because they might not be available to you. But just ask!
If you do not have a major children's hospital in your city, visit the website for the nearest children's hospital. They will usually have a PDF file you can download so you can get the correct information. If you do not have a local program, this is the best time to set one up! You don't have to provide services, but you can start an online chat room or online blog for your area for other parents and families that may think they are alone. The internet is a great place to start, but the grassroots campaign of asking around your local area first sometimes gives the best results.
The other place to locate information is your local school district. My Sunshine was accepted into the local school district program for kids with special needs. We were extremely grateful, because without this program, we would have needed to really try to find and afford a place that understood her needs and helped her develop at her level and speed. The school had various options and programs that were available to our child that we did not know existed. I understand they don't advertise what is available, because resources are slim. We are always grateful for what has come our way because of the chromosome 16 deletion that my Sunshine has. The school district had us bring her in to their facility to evaluate her. Even though she has been in a special needs program for most of her life (she is about to turn 3), non-profit organizations, and the local school district have their own criteria. Nobody is an expert when it comes to your child’s condition. No matter what they tell you. Especially at the school level. Chromosomes are such a new uncharted gateway to further exploration by scientist and doctors, that we as parents become experts in what our children are like and what they can and can't do.
It hasn't all been rosy for out little one, when we have butted head with Dr.'s, but you will know when you need to speak up. The community support from the local programs helped us help our child better. It also helped us want to help other local children with disabilities. Reach out to your community. The hospitals, all of them are your first stop, and if someone doesn't know the answer when you call, hang up and call a different department and ask that person. You will be amazed at the different answers you will get when you talk to different people. Sometimes it takes talking to 3 or 4 people before you get the answer you need or you get the confirmation that they do not know. I will call 100 times if needed to get information that will help my Sunshine.
She will be 3 in a week, and I can't wait, she has faced many obstacles and she is stronger than me, and her big sis, and her mommy and me, her daddy loves her very much.