By Chana Feinstein, M.A., CCC-SLP,
Cleveland Hearing & Speech Center
Angelman syndrome is a rare neurogenetic disorder that occurs in about one out of every 15,000 people. Most people with Angelman have very limited speech, or no speech at all. If you’re the parent of a young child with Angelman, you may be wondering how you can help your child learn to communicate, since speech is not going to be their main way of communicating. Here are a few suggestions to get you started:
- Make a communication dictionary. Notice all the things that your child currently does to communicate and write them down, along with what you think your child means when she does them. For example, does your child shift her body a certain way when she’s getting tired? Having a communication dictionary will help everyone who works with your child to notice all the subtle communication that your child is already doing, even if your child is not yet aware that she’s doing it!
- Develop a plan for responding consistently to the communicative behaviors you listed in the communication dictionary. For example, if a child wiggles in a way that usually means he wants a hug, people should consistently respond by saying, “Oh, I see you’re wiggling like this…I wonder if you want a hug,” and then offering the child a hug. Over time, this will help the child learn that their behaviors affect other people’s actions. Once they understand the power of communication and become intentional communicators, a whole new world will open up!
- Introduce a paper-based or electronic communication system that has lots of vocabulary in it, including verbs, nouns, describing words, prepositions, exclamations, etc. There are many options out there, including communication apps on iPads, paper-based communication books, and communication software on traditional speech-generating devices. In each of these communication systems, you touch word buttons to create messages.
Initially, your child won’t understand how to use the system. But if you and everyone else who works with your child models language on it consistently (for example, while talking to your child, you might say, “Let’s go to the library,” while simultaneously touching the buttons for “go” and “library”), your child will gradually learn to use the communication system for expressing whatever he or she wants to say.
- Find a good speech therapist who specializes in AAC (augmentative and alternative communication — basically, technology to help people who can’t meet their full communication needs via speech). Many speech therapists don’t have much knowledge of AAC, so you’ll want to make sure that your speech therapist does, or at least has a colleague who can help guide them.
Ask questions like: What experience do you have working with kids who need AAC? Have you done any extra training in AAC? Is there anyone you work with who can give you advice about working with my child?
Ideally, you want to find a speech therapist who can do a complete AAC evaluation and make a recommendation about the best AAC system for your child (this should include in-home trials of different communication systems so you can try out options in the “real world”). This AAC evaluation is necessary for insurance to cover an AAC system.
Your speech therapist also can help you learn how to:
- model language for your child on the AAC system.
- embed communication opportunities into everyday activities throughout your day.
- help your child learn to communicate a wide variety of messages, such as commenting, protesting, asking and answering questions, participating in social routines, telling stories, etc.
- Don’t feel guilty if you can’t work on communication skills right now! If you’re feeling overwhelmed and exhausted and can’t think about working on communication skills at the moment, know that you’re completely normal! Many Angelman parents feel guilty if they’re not working on communication because other priorities — maybe feeding issues, sleeping issues, etc. — are taking priority. Be kind to yourself. When things settle down, you can focus on communication skills when you’re ready.
Meanwhile, recognize that every interaction you have with your child is essential. Communication is about connecting with other people and sharing your wants, needs, thoughts and experiences with them. So even when you can’t formally work on communication skills, the loving care you give to your child throughout the day is helping him/her understand human interaction and connection and is laying a strong foundation which you can build on when you’re ready.