This is the time of year where everyone gathers to discuss the progress and goals for children in IEP meetings. In some of these meetings, the discussion is about a child who is nonverbal and does not have any way to communicate his wants, needs, ideas, feelings or thoughts. So the meeting begins, “He is so adorable! Everyone just loves him! He’s like the mayor of the school!” (Yes, Emperor, your clothes are beautiful.) Another member chimes in, “He is doing so great with his colors! The other day, I put a red and blue card on the table and he was able to choose the correct color!” (The colors that the tailor used are brilliant!). There may be a discussion about the child’s negative behaviors, but no mention of his inability to communicate. (Maybe the tailor should have made the hem just a little longer).
If your child is nonverbal or has limited verbal ability, AAC should be considered and the child should have an AAC system. If he does not have any communication system, he will not have “good” behavior because that is all he can use to have his needs met. For some children, behavior is their most reliable form of communication. If your child has no communication system, start the meeting with that issue and make communication the priority.
If your child is using an AAC system, ask about that system. When I say AAC system, I’m not talking about the same communication book that he has NOT been using for the past three years. I’m talking about something that works for that child. Really works. If it is not working, and you’re being told year after year that “We’re working on signs and PECs,” ask detailed questions. These questions could be in regard to any AAC system, so you can substitute the name of the system or the device that your child is using.
~You’ve been working on signs and PECs for 3 years, how much language has my child acquired in that time?
~ How many signs does my child independently use each day?
~ How many PECs does my child use and is the communication book always with my child?
~ Are you using the actual PECs protocol (which requires a 2:1 ratio) or is it a less structured icon exchange or pointing system?
~ How often is language modeled for my child using PECs and signs?
~ Is the person teaching the signs fluent in sign language? Are they able to spontaneously teach a sign to my child when they see that he is interested or excited about something?
~ Who are his communication partners? Do other children use or understand sign?
~ Is this the same approach you would be following if this was your child?
Put it in perspective for yourself. For example, if a child is learning language at a rate of 5 words per year, by the time he graduates at age 21, he will have 85 words. An average 3 year old has a 1000 word vocabulary. How long are you willing to continue with something that is ineffective? I have heard teams say that they have spent an entire year trying to teach two preferred items using signs and PECs and the child “is not discriminating between the pictures.” Within 30 minutes, those children are able to independently request those same items on a device. So what’s the difference? Voice output. Some children need voice output because it provides auditory feedback, and truly gives him his own voice. It is confusing for some children to have people speak for them because they know that it’s Mrs. Smith’s voice saying “I want pretzel,” so if a child is having difficulty with processing in addition to being nonverbal, they may think that Mrs. Smith wants a pretzel. As a side note, this is also important to consider if you are using something with voice output that requires recorded speech. Use a voice that is not familiar to the child, so he can identify it as his own. Some children benefit from signs and PECs, some children will not. If you wait for your child to be successful with a system that does not have voice output, you may be waiting for a very long time. If your child is not benefiting, it is okay to be the person in the room who says, “The Emperor is naked! This is not working. What else can we try? ” If the team has been trying the same approach for years and the child is not making progress, it is not the child’s fault and not because the child lacks the skill or desire to communicate. It is time to try a new approach.
If there is disagreement about whether the child is communicating effectively and making progress – even if you are the only one who disagrees – ask for data. Before you leave the meeting, put someone in charge of making sure your questions are answered within a week. Ask them to just pick a day and take data on your child’s communication.
If the team agrees that your child is not making progress, decide on a plan before you leave. Make someone accountable to try something different for your child. Choose someone who speaks positively about your child and believes that he has the ability to learn something new. If you look around that table, and you can’t find that person, you have two choices: Ask for someone new (an outside AAC consultant, a SLP in the school who is more experienced with AAC) or be that person who believes in the child.
Once everyone agrees that the child is capable of more and doesn’t really have an effective system to use, they’ll realize that they better go get some thread and a sewing machine because these meetings, from now on, are going to be an honest discussion about what is actually happening. This is the time to put the pieces together and give the child a system that will allow him to be successful, so that next year when you talk about his progress, you’ll be talking about the beautiful tapestry of language skills and the patterns that are in place to continue expanding.
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