We have a new Featured Parent to introduce you to! Sue is a parent to kids with special needs and graciously answered a few questions.
Fun and Function: Who are you and your kids? Do you blog?
Sue: I'm Sue. I am a mother of 6 kids with special needs, 2 are grown and out of the nest. My youngest range in age from 8-4. Blog: Mom on a Mission
FF: What is the nature of their special needs?
Sue: Isabelle is 4, she has autism and a seizure disorder. She was diagnosed when she was 16 months old. She is pretty much nonverbal. She does communicate with word approximations some signing and gestures and she is making great progress. She is very sensory seeking.
FF: What would you say is your biggest challenge in raising a child with special needs?
Sue: I think the biggest struggle raising a child with special needs is the isolation and lack of understanding and difficulty accessing resources. I have adult children who have disabilities. My children are not neurotypical. I have a child with bipolar disorder, 2 with autism, 1 with ADHD, and 2 with Fetal alcohol spectrum disorders. Four of my children are adopted. Having a child with unseen disabilities carries a whole new set of rules. You can not look into their eyes and see their struggles, they do not need a wheelchair or crutches, people can not see that their brain pathways are different, you can not see the sensory needs or the inability to communicate their needs. I am divorced and lost many friends and acquaintances over the years. It is a fight every year to advocate for their needs at school. It is a struggle to access healthcare benefits as the equipment and treatment they need is not always so clearly defined. It is hard to go to church, to shop, to go to the movies without people staring and pointing. People do not understand why children with autism act as they do and often see a child as misbehaving, acting spoiled etc.
FF: What would you say is your greatest joy in raising your kids?
Sue: The pure joy that they bring. They do not have preconceived notions of what they should have or how things should be. They accept things as they come. They accept people for how they treat them. A simple smile, a hug, blowing bubbles or seeing your child sign I love you the first time makes it all worth it.
FF: What would you say has been the biggest help to you in raising your kids?
Sue: Finding supportive services and surrounding yourself with people who do understand. Not dwelling on the people who don't get it. I have had to let go a lot of my inhibitions as well. Don't be surprised to see me dancing and singing the Yo gabba gabba theme song in the market.
FF: Give us one tool you would hate to live without.
Sue: I have a couple of things in my home that are invaluable. Isabelle is very sensory seeking especially vestibular input, so we have one of the rainy day indoor swing sets that hang in the doorway of the kitchen. It is a lifesaver, all the kids love it and it can hold up to 175 pounds and has 3 different swings. We also have a textured exercise ball that provides a ton of input opportunities. One thing that I designed is a business card that I carry with me that briefly explains autism. I carry them in my wallet and will hand them out or leave them laying when we are out. It has sparked many great conversations and saves me from having to make excuses for her behavior.
FF: If you could give one piece of advice to another parent who's child has just been diagnosed, what would it be?
Sue: Soak it all in. It is ok to grieve, it is not what you thought of when you thought of becoming a parent. Then embrace the journey, educate yourself, and surround yourself with people who understand and can support you. Treasure every milestone because there will be many. Enjoy the ride!
Sue, 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!