We have a new Featured Parent to introduce you to!
Fun and Function: Who are you and your kids?
Angela: I’m Angela, and my kids are Monkey, 8, and Prince Charming (or Grumpy Badger on a bad day), 5 ½.
FF: What is the nature of their special needs?
A: Both of my boys are diagnosed on the autism spectrum (PDD-NOS, which stands for Pervasive Developmental Disorder, Not Otherwise Specified – meaning a highly-functioning form of autism similar to Asperger Syndrome). They both also have SPD (Sensory Processing Disorder) and multiple food allergies.
FF: Where can we find your blog?
A: I write at Caffeinated Autism Mom.
FF: What would you say is your biggest challenge in raising a child with special needs?
A: This is a tough question to answer because there are many challenges. It’s especially true when I have kids who are the exact opposite even though they have the same diagnoses. I guess I would have to say that the most difficult thing to deal with is the difference in the way my boys process neurological information. They both have lots of sensory issues, so their responses to the world around them can be very surprising. Simple things to me can be painful or irritating to them, like the temperature of food or the sound of a fan in a bathroom. Along the same lines, it’s hard to know when something I say truly resonates with understanding in their brain. I find myself saying the same things over and over again, knowing that the information has not been internalized. Because their processing is different, it can take a long time for things to click in, and sometimes I never know if they truly “get it.”
FF: What would you say is your greatest joy in raising your children?
A: There are lots of joys, especially in light of the hardships. I find myself celebrating the little things more because they mean so much. Prince Charming was nonverbal and violent until we changed his diet. Little steps can mean a lot when you place it in the perspective of where you came from. For each of these moments we have joy. But if I had to say only one thing, it was when both of my children were able to spontaneously express that they loved me, and I knew for sure that it wasn’t scripted or prompted. They truly understood what that meant and it was pure joy!
FF: What would you say has been the biggest help you in raising your kids?
A: I’m a very independent person and I never thought I would come to rely on the connections found in a support group. Boy, was I wrong! In fact, I was so wrong that I actually started my own group. If nothing else, it was a way to help myself, and if others showed up and learned with me it was even better. We’re approaching our third year and the group is still going strong. When I was new to the world of autism, having other moms with similar circumstances serving as my mentors taught me a lot and helped me to feel less isolated. They helped empower me to trust my instincts, continually seek information, and have the confidence to pursue what I needed for my children. I am in debt to all of the wonderful moms who have shared of themselves for my benefit. I am so happy to pay that forward with my own group now. It’s a wonderful experience to share with other parents and hopefully make their journey easier because of what I’ve been through. This is the reason I decided to start blogging at Caffeinated Autism Mom. I figured I had a lot to share, and if what I write helps someone feel less isolated, gives them an idea to try, or just makes them laugh, then that’s a great thing.
FF: Give us one tool you would hate to live without.
A: One of the most beneficial tools my husband and I have used with great success is the token economy system, which helps us to positively support our children’s behavior. We started out with a very simple system a couple of years ago. We had a few rules and appropriate behaviors represented visually (using clip art), like “no hitting” paired with “calm body.” The boys could earn treasure coins for demonstrating appropriate behavior and the coins could be turned in for desired items or activities, like watching a favorite cartoon. We have evolved the way we utilize the system over time, but it is always relevant to the individual problem areas that my boys need help with.
FF: If you could give one piece of advice to another parent who’s child has just been diagnosed, what would it be?
A: Don’t accept everything you are told carte blanche. I was too trusting of medical professionals and quickly became disillusioned when I realized I was getting nowhere fast. I began seeking information independent of their recommendations, often finding better solutions. This is where support groups and mentors can play a huge role. You are your child’s advocate! Don’t accept the status quo if it doesn’t feel right. I sought a second opinion when I had a negative experience with “the” doctor in our area. I went out of our locale when seeking therapy because the waiting lists were much shorter and I didn’t want to wait to get help. I educated myself about alternative methods of treatment, like diet and nutrition, because I felt more comfortable with those options as a way to treat symptoms. All of these efforts have led to big improvements for my boys, and I plan to keep pushing forward.
Angela, 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!