Parenting Special Needs Magazine • May/June 2016 • Cultivating Support

Have you ever experienced this situation: Your child has a meltdown, resists participating in an activity with other children, or does something that is just unusual given the circumstances – and you handle the situation in a way that makes sense to you? After witnessing or hearing about the situation, a family member or friend makes a comment such as…

You might feel judged, offended, or unsupported. Or perhaps you feel angry or embarrassed, thinking about ways to avoid the person or situation in the future. Later on, after you and your child have had a chance to calm down, you may reflect on the events and consider what you could do in the future to make the situation better for your child. But how do you respond to the family member or friend?

First, it is important to consider the reasons people may make these comments (or just give you "the look") People are shaped by both their personal experiences with parenting and the training and education they receive. If they are raised in a permissive - or punitive - household, they may transmit those values to their parenting practices. If they are exposed to information on particular methods of discipline, they may embrace those ideas to the exclusion of others. When determining how to respond, it is important to consider why the person may be making the comment. The likelihood is that they either believe they have insight that would help you, or are simply uninformed.

Second, it is beneficial to determine whether a response is worth your time and effort. If the person making the comment is someone you rarely see, it is probably best to simply let it go, assuring yourself that you are doing the best you can and that their opinion is not important. If, however, the person is part of the fabric of your lives, education is critical. The following explanations (with you filling in the italicized blanks) may enlist support.

"My child's disability makes it difficult for him to (understand and interpret social cues, know where his body is in space, communicate his needs, negotiate circumstances that involve...). As a result, when he has to be exposed to (being told he cannot have something, left alone, asked to do.) , he may (cry, run away, strike out). When he does this, people often respond to him by (giving him what he wants or lots of attention, leaving places). That may solve the immediate problem, but does not teach him better ways to respond - which ultimately perpetuates his behavior."

"I know that (specific circumstances, environmental arrangements, social interactions) can be confusing or difficult for her. To help her understand and behave better, I often head off problems by (explaining complicated situations or expectations, reorganizing surroundings, bringing along items or activities that are enjoyable). This helps her tolerate situations. I also remind her of what she can say or do to let me know what she needs; that way she can express her needs appropriately rather than using her problem behavior. When she handles situations well and/ or tells me what she needs nicely, I try to respond quickly and provide positive feedback and rewards. I try not to give in to her problem behavior - even though it might be easier - because I want her to learn to participate in all important daily activities and communicate effectively."

When (I have to tell him no, I ask him to do , we are going into a crowded environment, a stranger approaches him) happens and he behaves inappropriately, it would really help if you could support me as I try to follow through with my plan. This might mean (helping me remove , remaining by the door, looking away from him until he is quiet). If we work together, he will quickly learn how to behave better.

Whereas some of the comments from family and friends can seem completely off-base, others from experienced parents or genuinely concerned individuals may offer keen insight and direction, especially since they may be seeing the situations and behavior from a more removed, objective perspective. You might even solicit opinions when things are calm, asking questions such as "What are you seeing in this situation?" "What seems to bother ?" "How am I responding?" And "What do you think may be contributing to this pattern?" It never hurts to listen, determining whether their ideas align with your values and the principles that guide your approach.

Openly discussing - and possibly sharing written information - about behavioral support with people in your life can have multiple benefits. It demonstrates respect and strengthens relationships. It provides an opportunity to brainstorm solutions to challenging situations. And it cultivates the support needed to care for a child with special needs.

Meme Hieneman, has a Ph.D. in Special Education and is nationally certified as a behavior analyst. She has published a variety of articles, chapters, and books including "Parenting with Positive Behavior Support: A Practical Guide to Resolving Your Child's Difficult Behavior." In her professional career, Meme has worked with children with severe behavior problems for more than 20 years.

"Hiteshvara's disability makes it difficult for him to tolerate crowded spaces, sit quietly, and participate in group activities. When he goes to story time at the library with his siblings and cousins, he becomes frustrated and starts pacing. Then he may throw the books that have been set out for children. When he does, people often respond by picking up the books. That may solve the immediate problem, but does not teach him better ways to respond - which ultimately perpetuates his behavior."

"I know that being in the library can be overwhelming for Hiteshvara. To help him understand and behave better, I often head off problems by laying out a blanket for him to sit on towards the back of the group. This defines "his space" and helps him tolerate the busy room. I also remind him that he can let me know what he needs with words or pointing rather than using problem behavior. I bring a choice wheel with other activity options such as looking at his favorite Minions book from home or drawing a scene from a favorite movie. When Hiteshvara handles situations well and/or tells me what he needs nicely, I praise him, give him items from his choice wheel, or let him take breaks from the activity. I try not to give in to his problem behavior - even though it might be easier - because I want him to learn to participate in all important daily activities and communicate effectively."

"In situations like the library story time, when Hiteshvara behaves inappropriately, it would help if you could support me as I try to follow through with my plan. This might mean that you silently signal me when Hiteshvara begins to pace so I can redirect him. It would also help if you could look away and leave the books L on the floor until I can ) guide him to pick them up at the end of story time. If we work together, Hiteshvara will quickly learn how to behave better."