We have a new Featured Caregiver to introduce you to!
Fun and Function: Who are you and your kids?
Evelyn: My name is Evelyn, and I am the proud Aunt to two amazing kids that live with me. Austin (Iceman) is 10, and Dakota (Stormy) is 6. Their nicknames are because of their medical issues.
FF: What is the nature of their special needs?
E: Austin has Chromosome deletion 15q13.2, Amblyopia Strabismus (visually impaired in left eye), Atrial Septal Defect (hole in the heart not repaired), Autism, Cerebral Palsy, Ectodermal Dysplasia (genetic skin disorder in which he does not sweat, has missing teeth, brittle hair/nails, and lack of eyebrows), Far sighted, Hyperextendible joints, intermittent hearing in right ear, tumor on forehead (awaiting surgery for removal and to see if it’s cancer).
Dakota has Chromosome 15q13.2 deletion, Autism Spectrum Disorder, Two types of Cerebral Palsy, Ectodermal Dysplasia (she too doesn’t sweat, has brittle hair/nails, and sparse body hair), Epilepsy, Far sighted (losing vision), GERD, Hyperextendible joints, Left leg longer then right, Malrotated stomach (twisted stomach not repaired), Pronating ankles (she walks on top of inside of feet), PICA (she loves to eat toilet paper), and Strabismus (left eye goes inward and upward).
FF: Do you have a blog?
E: I do not have a blog but am working on a group page on Facebook under the name Team Olive, will be public shortly.
FF: What would you say is your biggest challenge in raising a child with special needs?
E: The biggest problem is lack of funds. The kids can not go outside if it is hotter then 71 degrees Fahrenheit. Their internal organs will start to burn up. But I don’t have the funds to buy them cooling vests. Dakota needs special shoes because of wearing braces on her feet. We have tried other regular shoes that are wide but they are destroyed within a month. Austin desperately needs some kind of communication device (Ipad etc) because of his difficulties with his hands and speech. Another big problem is because there are about 15 kids in the world to have their chromosome deletion, no one knows anything about it! No ideas on prognosis or anything. Which also means no one wants to work with them. The doctors are too afraid.
FF: What would you say is your greatest joy in raising your children?
E: The greatest joy about Austin and Dakota has to be their perseverance. They will do everything with 110%. They have hearts of gold.
FF: What would you say has been the biggest help you in raising your kids?
E: The one thing that has helped me the most is my faith in God. He is the ultimate healer and provider.
FF: Give us one tool you would hate to live without.
E: The greatest tool is a Convaid Stroller that we are borrowing from a family at church. It is an adult size stroller and both kids can sit in it while I push. Due to State of California having no funds we can not get a stroller of our own. It took 6 months just for them to approve Dakota’s braces on her feet.
FF: If you could give one piece of advice to another parent who’s child has just been diagnosed, what would it be?
E: The advice I would give is: Pray and Fight! Our school district does not understand the severity of the kids Ectodermal Dysplasia. It has taken 8 months for them to realize that the children still need to have outdoor time which can be possible if there is shade. They don’t always have to have air conditioning. But finally the district is starting to listen. So just keep fighting! Some of our kids can’t speak for themselves we are the only ones who can. I would love to meet with anyone who’s child(ren) also has the deletion. But I’ve been told by one genetic group that there are 15 kids in the world and another genetic group that my kiddos are the only two.
FF: And finally, an addition to our interview series, how do you help your kids make it through summer?
E: Making it through the summer is very difficult. Where we live is usually over 100 degrees Fahrenheit so we do a lot of ice/water play.
Evelyn, thank you so much for taking the time to talk to us and all the readers here at Fun and Function.
If you would like to be a featured parent or professional, just let me know!