Two days in a row last week parents asked me about non-verbal learning disabilities. One child had been given that diagnosis and the other had been given a diagnosis of Asperger’s Syndrome. I told them both that people in different academic centers used one or the other of these diagnoses to describe the same general population of children, at least according to my experience. When pressed to give a diagnosis, I tend to use a more inclusive one of autistic spectrum disorder that has three criteria only – (1) Difficulties with speech. (2) Difficulties with social engagement. (3) Behavioral sterotypies (rigid, repetitive behaviors such as flapping, rubbing, sniffing.) I also told both sets of parents that categorical diagnoses are useful for obtaining services and sometimes for planning interventions, but otherwise tell you little about an individual child. I generally refer to children like theirs as “quirky” or as having “regulatory problems” that can interfere with their learning and growing. The parents asked me what I would recommend that they do to help their children at home.
An important source of ideas about helping parents with NLD children is my friend and colleague, Dr. Anne Berenberg. Over the years, in our many conversations in Massachusetts, Illinois, and Michigan, Anne has taught me a great deal about the challenges faced by these parents. She co-authored a chapter in a recent book: Palombo, J., & Berenberg, A.H. (1999). Working with parents of children with nonverbal learning disabilities: A conceptual and intervention model. In Understanding, Diagnosing, and Treating AD/HD in children and Adolescents: An Integrative Approach. Ed. J.A. Incorvaia, B.S. Mark-Goldstein, & D. Tessmer. Northvale, New Jersey: Jason Aronson.
Through my own clinical experience, through my study of development, and through consultations and conversations with colleagues like Anne, I have developed a set of recommendations for what parents of NLD children can do at home to help them grow. In keeping with my two earlier postings – “Ten Ways to Help Your Child Behave” (of which I have only written five to date!), http://www.supportingchildcaregivers.com/?sort=&search=behavior, and “Ten Ways to Handle Sexual Abuse Disclosure”, http://www.supportingchildcaregivers.com/?sort=&search=sexual+abuse, I will write “Ten Ways to Help Your Child with NLD at Home”. When reading these suggestions, it is always important to remember that your child is unique. Although he or she may seem to “fit” a certain cluster of behaviors or problems, how he or she developed these problems, what these problems mean to the child and to the family, and what will help, is highly variable and depends on the individual child and family.
1. Imagine your child’s mind:
Probably the most important thing you can do to help your child at home is to get better and better at “imagining your child’s mind”. A wonderful parent of a child on the spectrum sent me the following email (the names have been changed for confidentiality purposes):
“I want to share a story from this morning regarding Jane. Jane woke up and told us that Jack (her second grade teacher) sings songs that all the kids disliked. I asked her how did she know that the kids all disliked Jack’s songs. She replied because they all moaned and groaned and said, “Stop! Stop!” I thought that is may be a case of Jane being very literal in her interpretation of what she saw. So, I told her a story about how her cousins get squeezed by their dad, her uncle, and they shriek, “Stop!” when in fact they really love what’s going on. I also said that sometimes, kids say the opposite of what they really mean (kind of like sarcasm, which is a concept I introduced a while ago). For example, some older kids say that they don’t like their parents to hug and kiss them and act upset when their parents kiss them. In reality, they really actually love it and they’d be sad if the parents stopped hugging and kissing them. She paused for a bit to consider this and then she said she didn’t like Jack’s songs. I then said to her that it’s OK for her to not like Jack’s song. She can just go away from it.
The mother was emailing this to me and to others on Jane’s “team”, including her teachers. She added, “I would love to get your respective perspectives on this. If you agree that Jane is being literal in interpreting what she sees and is generalizing her own feelings, this might be a great opportunity to help her understand that there may be alternative meanings to what she is observing.”
What I liked so much about this email was that the mother “imagined Jane’s mind” enough to not take her complaint about Jack at face value, to first inquire more to find out what Jane’s observations had been to allow her to draw that conclusion, and then to imagine how Jane might have misinterpreted the other children’s behavior. If Jane had been distressed by Jack’s singing, she might have misperceived her own distress reflected in the other children’s joyful protests. I also liked the fact that Jane’s mother did not criticize her for “not liking” her teacher’s song, but instead legitimized Jane’s feelings, while at the same time pointing out that she could behave in an adaptive way (“go away from it”, instead of making a fuss).
2. Slow down:
The second suggestion I would give to parents of all children who are struggling would be to slow down. Slowing down gives you a chance to think. Slowing down gives you a chance to manage your emotions and your stress level better. There are many ways to slow down.
One is to give more time for transitions. A big transition is getting up and out in the morning. It is always hard for families to manage this transition, but when the family has a child with this kind of regulatory difficulty, it is many times harder. Giving yourself more time for this transition usually requires a combination of getting up earlier and organizing things ahead of time. Both are huge challenges, but if you can turn these habits into rituals, it will save time in the long run.
Another way of slowing down is talking more slowly. Talking slowly means speaking with a slower pace and leaving more pauses. Pauses are important because they chunk your communication into pieces that your child will more easily apprehend, and the pauses also invite him to let you know if he has had enough of the conversation.
One more way of slowing down is to take more time to accomplish tasks. Whenever you can, think of the tasks as an opportunity to spend good time together and to help your child learn. If you are helping your child put away his toys, approach this job in an unhurried fashion. Talk about what you are doing as you arrange toys on the shelf. Do not ask many questions, but make comments. Remember that questions place a demand on the child, but comments can facilitate understanding.
3. Take a break:
What I mean by take a break is more than just stopping what you are doing. I mean, take a break to restore regulation, to organize the body and the nervous system. I have learned about these “regulatory breaks” from two main sources – from my occupational therapist colleagues, such as Debbie Bausch, and from an important child psychiatrist colleague, Dr. Bruce Perry, (http://www.childtrauma.org/index.php/articles/cta-neurosequential-model). Most regulatory breaks involve repetitive rhythmic activity, such as walking, clapping, or drumming. Doing these activities with someone else enhances their regulatory effectiveness because the coordination of rhythms between two partners (that occurs out of awareness) is highly organizing. This is true with human-centered animals also. Walking a dog is more regulating than walking alone, although one of my dogs can suddenly lurch to the side when he finds an interesting smell on the path so that it sometimes can be dysregulating to walk him! Also, horse back riding can be highly organizing for the same reason – even more so, because the human rider is coordinating rhythms with a living creature with whom she is in physical contact. Often children with NLD need to take regulatory breaks during the school day. They may take a walk to the principal’s office carrying a heavy load, which can be regulating to the body. Or, they may jump on a trampoline, or run in the playground, if these activities are regulating to that particular child. If the child likes to run, it is better to avoid random running. Instead, one can construct a simple obstacle course that indicates a route for the child to take, or a route designated by objects the child must tag, before returning “home”. Sometimes the child may request to take a break, but many children need these breaks built into their school day. If the child is able to anticipate a break, he may be able to stay organized and engaged better.
4. Tell a story:
A useful technique I use is one I learned from my friend and colleague, Dr. Gil Kliman, (http://www.childrenspsychological.org/content/view/36/46/). Gil’s technique includes building a “reflective network” by talking about the child and his experience of the world with others in the presence of the child. When you do this you are not declaring what is in the child’s head. Instead, you are relating events and what you can tell about the child’s subjective experience of them. For example, when Mom comes home, then Dad might say, “Oh, Mom, George and I had such an interesting afternoon. First we went to the library, but there were too many children in the library making noise, and George didn’t like the noise, so we left. Then we walked along the stone sidewalk and looked at the spring flowers coming up in the park. George got a pebble in his shoe, and it hurt his foot, so we sat down on a bench and took off his shoe and shook the pebble out and saved it, and here it is!” This story (perhaps most appropriate for a preschooler) is probably just too long for some children, and not long enough for others, but the idea is to provide the child with a snapshot of his daily experience in language that he might not be able to put together in coherent form himself, and link this experience to his expressed emotion. As I mentioned above, I find it is easier for a child to think when you do not ask him a question; a question is an implicit demand, and often it stresses the child. Don’t worry about getting the story right; the child will correct you if it isn’t, or if he doesn’t he understands that the story you are telling is only a guess. It is often best to direct your gaze at the other adult when you speak so as to not stress the child unnecessarily (direct eye contact can be highly stressful for these children). Later, Mom may set the table with George and say to Dad, “Dad, George and I set the table, and George asked me why there were spoons, and I said, because we are having soup tonight. I can understand why he asked me that because we hardly ever have big spoons like that at supper!” You can see how these simple stories can help weave together events of the day into a coherent story that puts together what happened with how the child felt about it, the outside world with the child’s inside world. It is an exercise in integration.
Creating a narrative incorporates the first idea also, in that while you are telling the child about his experience you are practicing imagining his mind. As you search for words to describe his time at the library, you are creating something that includes part of his subjective experience and part of yours, because you don’t really know what he was thinking or feeling, you can only imagine.
Another suggestion I make to the parents of my little patients is to read to them, and when you read them stories, stop periodically to ask the child to tell you what is going on in the story. That is because children with this kind of learning disability often have a hard time “finding the forest for the trees” and get lost in the details of the story. Therefore, they can use help learning how to find “the forest”, or the main theme of the story. This can be tricky, because if it is too hard for your child, or if you get too anxious or sad if they don’t get it right, this process can backfire and make the child dislike reading or fear your disapproval. But if you back off when your child starts to resist, it can build their skills.
A hallmark of children with NLD is a lack of flexibility. This has nothing to do with actual intelligence, but only means that the child with NLD is challenged by novelty and unpredictability. Therefore, it is important to help him or her prepare for the new or unexpected. That means rehearsals – walking through a new school before the school year starts, looking through the picture book that will be read in afternoon meeting ahead of time, making a calendar with pictures or words representing the events of the days and week ahead, and planning small visits with an important new person such as a babysitter before being left alone with her. In school, it is necessary for the child to be introduced to a new subject matter or a new academic technique slowly, and to be given frequent reviews.
The second set of five ideas for the parents of children with NLD will appear in the next posting. I would like to offer you illustrations of how these ideas can or cannot work, but the very best examples are real ones, so I am inviting my blog readers to send me comments that I can incorporate into my next posting.