We have a new Featured Parent to introduce you to!
Fun and Function: Who are you and your kids?
Kristy Kargel: I'm Kristy Kargel, and my kids are Emily, 5 3/4, and Isabelle, age 3.
FF: What is the nature of their special needs?
KK: Emily is our child with special needs. She has multiple diagnoses which are: Intractable Complex Partial Seizures, Cerebral Palsy with hypotonia, Cortical Visual Impairment (CVI), Dystonia, and Global Delays which include being non-ambulatory and non-verbal. Isabelle is neurotypical which sometimes makes her more of a challenge than her sister with multiple needs!
FF: Do you have a blog?
KK: I have an informative web site more than just a blog, Special Parent Connections.
FF: What would you say is your biggest challenge in raising a child with special needs?
KK: Emily has multiple needs and the biggest challenge would be to keep everything straight and advocate for her the best that I am able to. There is always dealing with the stares of people as you walk by with your child in their wheelchair. Many times those stares from adults feel as if they are a look of pity and others are stares of almost disgust. Either way it is hard to deal with them no matter what the content. It is also hard to know the right way to answer a child when they ask questions about Emily and why she can not do something.
FF: What would you say is your greatest joy in raising your children?
KK: The greatest joy to me is hearing their laughter.
FF: What would you say has been the biggest help you in raising your kids?
KK: For my child with special needs it has been the grant and waiver programs that our state and county have to help with the medical challenges and provide modifications to our home to accommodate Emily's growing needs. We also have family close by and they provide a great deal of respite help so that my husband and I can get away for a few hours a week and sometimes a day or two overnight somewhere.
FF: Give us one tool you would hate to live without.
KK: Emily's iPad or my iPhone. Both pieces of technology keep all of us entertained especially when we are at the doctor's office or hospital. The fact that there are so many applications that can open up the world to those who are non-verbal and visually impaired is so cool! Technology has come a long way and is making life with disabilities a little bit easier.
FF: If you could give one piece of advice to another parent who's child has just been diagnosed, what would it be?
KK: I can never really give just one piece of advice. Life, after learning that your child has just been diagnosed with one or more challenges, is truly hard. However, with time, it does get easier. So I have six things I would advise a parent of a newly diagnosed child: 1) That you always have the right to tell a doctor that you respectfully disagree with them no matter what the situation might be. 2) Educate yourself as much as possible on your child's diagnosis and any medications or therapies they may be prescribed. Knowledge will allow you to make an educated decision on whether or not you want to try that treatment and you will also know the pros, cons, and potential side effects to look for. 3) You have the right to find a new doctor or therapist if you do not agree with them, or that doctor does not treat you and your partner as a member of the decision making team. 4) You are always the one who knows your child best so stand your ground when advocating for them. 5) In time "it" will get better. The symptoms may seem to get worse and more challenging, but over time you will know how to deal with "it" better and that is how "it" will get better. 6) Network with anyone and everyone you can that has a child with the same or similar diagnosis as yours. These parents will soon become your close friends and support system of people that really "get it."
Kristy, 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 us know!