Robin Hurd

When AAC Change is Needed

by Robin Hurd

New Year’s Day is a time when people often re-evaluate their lives and make changes. For parent’s with a special needs child, that re-evaluation is more or less constant, but I will take this opportunity to talk about the process of figuring out what to do if changes need to be made with the AAC interventions your child is using.

I am going to assume that you have looked at how your child is doing with the current AAC interventions, and decided that something must be done to build communication competence and achieve the potential you feel possible. Now comes the hard part: deciding what needs to happen to improve results. As you read the column, keep in mind that the focus is not simply on the device or technology per se, but on the AAC system and the way it is being supported or taught.

Reasons why change with an AAC intervention is needed are varied. We must figure out which of these categories our own situation falls into, and then we can decide what needs to be done from there. Here are the categories:
1) The AAC system my child is currently using has never been useful to him or her—he just doesn’t use it at all.
2) My child used to use his or her AAC system, but doesn’t want to any more.
3) My child uses the AAC system in one setting (like at home or in therapy), but is not using it as effectively other places (such as in the classroom).
4) My child got this system, but the school team doesn’t seem happy about using it and may not be supportive. (If you have another category to add to the list, please let me know.)

Once you decide what category your child’s situation fits into, you may begin to experience that “bear robbed of its cubs” feeling coming over you. Resist it at all costs! Go take a warm bath, have some chocolate, sit by the fireplace, or whatever calms you. You are in the midst of evaluating the situation; don’t let your emotions get in the way of you getting a clear game plan. (Many of us have been through some pretty rough IEP meetings, but right now we can’t let that emotional baggage get in the way. Make this your mantra: I am going to be well prepared for whatever changes need to be made. This time, things won’t be so bad!)

Category one: the AAC system has never been useful

If your child’s situation falls into this first category (the system has never been useful), what needs to happen is a re-evaluation of your child’s needs. Two things can cause this problem. Either there is a mismatch between your child’s physical ability to access the system and the system itself (My child wants to use the system, but it’s too hard for him to actually do it.) Or, your child simply doesn’t find that the system in place meets her need to communicate!

This can be a bit more complex than it first appears. Take a look at the other ways your child uses to communicate—signs, gestures, words you might understand but others don’t. What do you see? If there is a lot of communication going on, even if it is very unconventional, it is obvious that your child has the desire and skills needed to communicate with others. So you can assume that the problem is that his current system is not meeting his needs. As I have said before, language is all about power. If I can have more powerful communication with my unconventional methods, why would I choose to use a less powerful system? Many early systems that are given to kids are activity based. There is the circle time activity, the snack activity, the color activity, the book reading activity… Many times these activities are based on what teachers think “good kids” should want to talk about, not what regularly developing kids are really saying!! (In addition, these types of systems are set up so that an adult has to change the system from one activity to the next, so that if the child should want a word from a different activity, he cannot get to it by himself.) If the child has never flourished with the system, you don’t need to waste any more time trying to make it work. It’s time for a new AAC evaluation.

Before any new systems are put before your child, do your homework. Get on the websites and look at what is out there. Think about whether your child would respond well to a voice output system, if he currently isn’t using one. Think again about her other methods of communicating. Is she putting “words” (gestures, signs etc.) together? Then look for a system that allows that. Does she have a variety of signs, gestures and/or words that you as a parent understand? It may be useful to figure out exactly how many he is currently using. Any new system must have more vocabulary than your child currently has, or you are doomed to the same situation you are in now. Think of how well your child adjusts to change. If this is a big issue, look for a system with plenty of “grow room”. Is there an outside expert on AAC in your area who you feel is more qualified to evaluate your child? AAC is a specialty field; if you are lucky enough to have local resources available, you may wish to use them in the evaluation process. Only after having done your homework thoroughly, are you ready to talk to the school about the changes you think need to be made.

Category 2: My child used to use the AAC system, but doesn’t now

The second situation is similar, but your child at first was using the AAC system, and now is not. As a general rule, this is a sign that the child is bored with the system and ready for more. Occasionally, there has been a change in the disability of the child, which makes the system no longer a good match. If you do see a change in your child’s physical abilities, you will want to find out from the doctors what to expect long term, so you can help find an AAC system that will be accessible for your child long-term. If you suspect boredom with the current system, evaluate other ways your child can communicate. If your child doesn’t have voice output, play around with a tape recorder or talking toy, and see how your child responds. Josh and Caleb have a Leap Pad, and one of their books for it is a Richard Scary book which includes a part where one character asks, “Would you like a cookie?” and the other responds, “Oh yes, thank you!” Shortly after the boys discovered this page, it became a new “AAC system” for them, when they wanted a cookie. If you are seeing this kind of use for talking toys, it’s definitely time to consider voice output!

The immediate reaction of many school staff when faced with a child who is not using a system, is to move them down the hierarchy of AAC systems to something “less complex”. Many times, the opposite is what needs to happen. You will want to do your homework before you request an AAC evaluation. Some suggestions on how to do this were listed in the preceding paragraph.

Category 3: My child uses the AAC system better in some situations than others

In the third situation, your child is doing well sometimes, but other situations need improvement. You can be pretty sure that the system in place currently is working, but there are some problems with support, or distractibility, or the child just needs a bit more time to get proficient at using the system under pressure. You will want to think about these things, to decide what you think the basic issue is.

Sometimes, the people around a child begin to “help him” convey his meaning, so that the child will say, “crayon”, and the person will say, “Oh, you want a crayon” instead of asking the child to clarify what he is trying to say. If you think this is the case, you will want to talk to the staff about pushing your child to use complete thoughts. Maybe you find yourself doing this, also. Begin to expect more at home as well.

Sometimes, a child can be so distracted by her environment that communication is difficult. Look at where the best communication takes place. Is it a very calm environment? Is the situation with the least AAC use a busy one? Then it might be that distractibility is a problem. Before you go running out to get some Ritalin, see if some more practice in a less busy setting helps your child to improve his skills to the point that he is no longer so distracted by the setting. Using language is hard work, especially when you are new to it!

Another reason why some settings are tougher for kids is performance pressure, or stage fright. If you are sitting in circle time with 23 other people looking at you and you must say something, the pressure is on! For many kids, this can be tough. Add a language delay and possibly motor problems, and it can be really tough.

No matter what you discover about your child as you reflect, share it with the staff who work with you child! Call a special meeting to talk to them all together. Explain what you are seeing in different situations, and explain what you think the issue is. Then explain what you think will help (more time to get comfortable with the system, a less busy environment, a different way of working with the child, etc.). What you have noticed can really help the staff to help your child.

Category 4: lack of support by the school team

The last situation is the hardest. Your child’s school team may not be pleased about using an AAC system, and may not be providing the support your child needs. You will want to figure out what exactly you think the child does need to be successful—more staff training, support materials to help staff teach the child on the device, or simply a better attitude. Do your homework to see what you can find to help the school get what they need. Find out who can train them on the AAC system or intervention strategies. Look into support materials that are available. Consider funding the AAC system with your private insurance, if a system isn’t available to your child 24/7.

If the problem is attitude, you may want to do two things simultaneously: Try to build up and support anything you can find that is going well at school, bring snacks to your meetings and generally try to be nice, while at the same time, look into other school options for your child. Most of us can’t move to a new district (school), but we may have private school options where our child would find a more supporting attitude. (Staff with a good knowledge of AAC is not as important as staff who are willing to learn!)

After you have done your homework, you will want to have a meeting about the situation. Let the school team know that there are some things that are adversely affecting your child’s progress, and then explain clearly what these are. If it is lack of training, tell them what is available to help. If it is the need for support materials to make teaching the system easier, tell them where they can be found. If it is attitudes, tell them that as well, but describe what your ideal team is like -- refer to the AAC Rules of Commitment as a resource. Chances are, they would like to be a part of that ideal team as well! Find out what their suggestions are for getting from where things are now to that ideal situation. This will give you a pretty good idea of whether things can be improved. If they can’t, you have been checking into other options, so you may soon be able to make a recommendation for a different placement altogether for your child. (I would hold off on mentioning this in the first meeting. Wait until you are sure that your current team situation can’t be improved, and until you are sure that the other placement is truly an option for your child.)

In the United States, we are given the right to take the school district to court to force them to provide services to our special needs children. The problem with this is that we cannot force attitude change. Your legal action with the schools may pave the way for better services for other families in the future, but it probably won’t get the attitude change that you may really need in order for your child to be successful. If you do choose this legal option, be aware that though your child may receive equipment and services he or she needs, the underlying attitude problems that affect success will probably remain, or perhaps even grow stronger.

All of us will go through times when our child’s AAC intervention needs to change. Evaluating what is happening and looking for solutions before talking about the problem with school staff will go a long way toward helping us not to feel intimidated, and to be able to offer solutions that staff may be too busy to find on their own. You are the world’s greatest expert on your child; put that knowledge to work to make your child’s school experience using AAC all it can be!

As always, feel free to write in with your comments, questions, and suggestions for future topics to cover. parents@aacinstitute.org. I love to hear from you!