Living With Communication Disorder – Uniquely Us

It Can Be A Learning Process For Everyone

Last year, my daughter Lilly had an epic meltdown in the car. She was trying to tell me something, but I couldn’t understand her. I played detective, asking all sorts of questions hoping that she would give me some sort of clue as to why she was upset. Yelling escalated to screaming, headbanging and kicking, and I ended up pulling over for safety’s sake. The screams tapered into quiet sobs, and we eventually made our way home, where I discovered the source of her distress: she had left her favorite notebook at school. Living with a communication disorder can be a learning process for everyone.

Living with a child who has a challenging time communicating can be trying. It’s exasperating when they can’t get their needs across, and the frustration can result in many challenging behaviors. We’ve learned many things through trial and error and are always searching for new ideas to make communication easier for Lilly.

We’ve learned to be proactive whenever possible. If your child has a preferred method of communication (sign language, picture communication cards, or an electronic communication device), it helps if the same method is used consistently at home and at school.

If your child receives speech therapy, be consistent with any “at home” exercises they recommend.

When Lilly first started using a tablet as a communication device, it took some excessive prompting to get her to use it regularly, especially if she was already frustrated. Once she reaches a certain point in a meltdown, the tablet is likely to go flying, and its purpose is totally defeated. Getting the tablet into her hands at the first sign of aggravation to prevent a meltdown is a goal we are constantly striving for.

At home, Lilly is in a comfortable bubble surrounded by familiar things and the people who know her best. Venturing outside that bubble can be scary. If something unanticipated happens, a lot of patience is needed; it is easy to get flustered out in public, trying to calm a distraught child and feeling worried that all eyes are on you. Be kind to yourself, breathe, and know you are not alone in this journey.

These are some free resources that we have used. 

• Instructions for making PECS binder.
• Let Me Talk App for Android and iOS.

Feel free to share any resources that have worked for your family – let us know at pn@northstateparent.com.