Tag: Parenting

Independent Living for Young Adults

Over the last few years, I have worked with patients who are aging out of the public school systems. Often, their families are planning to have that child continue to live with them, because they feel that their handicapped child is unable to live independently. Many of these children/young adults are not good candidates for group homes, because they are too high functioning, but they cannot live without support either. The problem becomes more complicated because as these young people get into their 20’s, their emotional development is similar to their non-handicapped peers—they want to be living out in the world, not in their parents’ homes.

As a result, many parents have worked to figure out an in-between arrangement where these young adults can live in apartments and have the staff come in to provide support. Some have joined together with other families so young adults can be sharing a house and support staff.

For young adults living at home or in one of these alternate settings, there are still concerns.  Here is a partial list:

  1. They continue to be isolated. They may live in the community, but many have very limited interaction with people in their neighborhoods or in their communities.
  2. Most do not have transportation except for their family members. This makes it difficult for them to be truly independent.
  3. The opportunities available in the community for recreation are somewhat limited. The opportunities for casual relationships and activities is very limited.

The parent of one of these young adults showed me a program in Florida that seemed to me to provide an answer to some of these concerns and I have been encouraging as many people as possible to begin a discussion of whether this may be an answer for the young people in this area.  Basically, the people at Noah’s Ark in Florida have built a community, with a community center in the middle. It is my understanding that there are a variety of housing options in the community—group homes, supported apartments, etc. Then, programs are developed at the community center that residents can participate in. I have learned since first hearing about this that there are several other similar programs in the country. In some ways, this looks similar to some of the models developed for senior citizens.

It would be interesting if this type of program could include a fitness center, where residents could swim. Or a café where they could go for coffee. I could see a number of possibilities for our young adults to live a more “normalized” life in a community that provided both safety and opportunities for independence.

Some have told me that one of the reasons not to support this type of program is that the emphasis should be on integration into the community. I would argue that we don’t really have integration at the present time; these young adults are very isolated. I think this model could be “integrated” by bringing in non-handicapped peers to staff the programs or possibly to participate in events.

My goal at this point is just to begin a dialogue about whether this type of program might be a possibility for handicapped young adults in this area. I hope that parents will begin to discuss this, because it has been my observation that parental input is crucial in developing new programs to meet their children’s needs.

A Strange Perspective on Strength

A number of years ago, I had two patients come into my office, one after another. The contrast between the two has remained with me for a number of years.  It helped me learn something about strength.

The first one was a young man who was tall and what we would call, “well built.” He had the size of a football player. What he didn’t have was much emotional strength.  Every time I suggested something to him as a way to cope with his problems, he had a reason not to do it. Sometimes he said that it was “too hard.”  Sometimes he complained that it would take too much effort. It quickly became clear to me that this young man was unable to face very much. Even though we would have regarded him as being strong and capable, which was true of his physical abilities, it was not true of his emotional abilities.

This become even clearer with my next patient. This was a girl who had struggled for years with a major medical problem. She had tolerated and survived many medical procedures. On the day she came to see me, she was having a spinal tap. She regarded that procedure as just something else that had to be done. I asked her how she tolerated the pain and her response was that, “it really didn’t last too long.” What a difference between these two people. He was physically strong, but had little emotional capacity to tolerate any discomfort. She was physically compromised but had the grit and tenacity to cope with the most painful of procedures.

It was interesting to me that she did not see herself as strong or brave. She just saw her treatment as what had to be done. He saw himself as being strong, and was insulted if I suggested that he had any kind of weakness.

I wish we could begin to value emotional strength. I wish we could understand how much value it has for our lives. I wish we could spend as much time and money developing this type of grit and of resilience. I also hope that we can begin to value it in others and in ourselves.

Why Do They Do That? Consistent Reinforcement

One of the best explanations for children’s behavioral issues is the concept of reinforcement. All of us have heard about the effects of positive reinforcement or “reward.” We have heard that one of the ways to get children to obey is to give them an immediate reward for specific behaviors. In the opposite way, people think that the way to change or eliminate a behavior is to give a negative reinforcement or a punishment.

The one thing that parents don’t often consider is something we call the “candy aisle phenomenon.”  For psychologists, this is the type of reinforcement that is most important. Here is how it works. A child is in the candy aisle and asks his/her mother for a piece of candy. Mom says, “no.”  In fact, Mom says “no” on every one of the next 5 times that her child asks. So far, so good. Unfortunately, the next time the child asks, the mother gives in. The child has learned to keep up with the questioning for a longer time. This is what we call “intermittent reinforcement.” The behavior in question is reinforced or rewarded sometimes, but sometimes it is not. What happens is that you child has learned to keep trying! After this type of reinforcement, the behavior is very difficult to change. In fact, it is the type of response that is the strongest in prolonging the behavior.

Many parents tell me that they don’t use this type of reinforcement, that it is not a problem for them. What I think happens is that parents don’t notice how frequently they engage in this type of reinforcement. In public, it is often easier to give in rather than have your child melt down, right in the middle of the candy aisle. And, as you have noticed, children do have the capacity to wear you down, even with the best of intentions!

What should a parent do?  First, be careful when you tell a child “no.” You must be really willing to enforce it. If you are not sure, then don’t give a response. This is true of situations that involve both major and minor issues. It is true of items in the candy aisle, of promises to go somewhere (“No, I will not take you to Target”), or of possibilities of major purchases. “No” needs to mean “No.”

So, what if you have told your child “No” but then find out the situation has changed. Can you change your mind?  Of course. But, (and this is an important “but,”) you change your mind because YOU choose to, not because he/she has relentlessly campaigned for it. This may sound like a minor distinction, but it really isn’t. It is quite important. It avoids the intermittent reinforcement (of his/her nagging behavior) and that is key!

Why Do they Do That? It’s Developmentally Appropriate

Often, parents ask me why children engage in certain behaviors.  We have looked at a variety of reasons—because the behavior achieves the intended purpose, because it meets some sensory needs or because it is because it is part of a cycle of behavior that is characteristic of children with Down’s Syndrome.  Are there other reasons?  Yes there are.

One reason that hasn’t been discussed is that the behavior is developmentally appropriate.  If you have ever wondered why your preschooler insists on throwing everything off his/her high chair tray, you will understand the developmental explanation.  Children at his/her age are just learning about object permanency, and he/she is experimenting.  Does a toy that is tossed off the tray continue to exist? When they see it on the floor, it is proof that it continues to exist, It takes a number of repetitions before a toddler can have the principle firmly established.  Unfortunately, the repetitions are usually very unpleasant for adults who are involved!

Similarly, there are many actions that are developmentally appropriate. “No!” from a two-year-old is hardly surprising.  Eye-rolling from a teenager is also developmentally appropriate.  I find that many four year old boys seem to develop a pattern of challenging authority, somewhat like we see in preadolescent males. This is not really “bad” behavior, but is a pattern that does present some challenges to caregivers. These elements of growth are developmental, but can also be difficult.

Children with special needs often show a similar pattern of developmentally appropriate behaviors even though their cognitive profile may not be the same. Some parents are surprised to have their impaired teenagers begin to show typical “push back” behaviors that are characteristic of non-handicapped teens. Disabled two year olds will also develop the “no” stage in spite of their handicapping conditions. Young adults with disabilities do develop a desire to have relationships with the opposite sex and often want to leave home to establish their own independent lives. Sometimes these behaviors are not understood and parents are often unprepared to deal with these “normal” types of behavior.  Interestingly, the types of parental response to these behaviors is usually the same—good limits, appropriate amounts of freedom and lots of teaching of appropriate behavior.

Why Do They Do That? Because They Have Sensory Needs!

#2. Children do what they do because they have sensory needs!

Often, children will engage in behaviors because they have some kind of sensory need. Children with a Sensory Processing Disorder often will engage in behaviors that will not necessarily seem sensible or reasonable to you, but these behaviors do meet a sensory need.

Here’s how I think about it.  Have you ever had one of those days when you were craving chocolate?  You might try eating chips or cheesecake, but truthfully, none of it works.  What you really need is chocolate.  Children’s sensory needs work in a similar way. They crave certain kinds of input. Some have a high need for strong sensory inputs. These are children who seem to engage in “rough” play, who jump down stairs or run into walls. The one thing that these types of children can’t tolerate is very mild stimuli (like tags or seams on their socks.) The rough play behaviors serve to give them the sensory input they need. Many parents will describe this type of behavior as “hyperactive”. It really isn’t related to ADD or hyperactivity. Actually, it is sensory seeking. They need the sensory input. If you try to punish or discipline this activity, it won’t work. It is not “bad” behavior.

So, how can you treat this type of behavior?  The specialists are Occupational Therapists, who can both diagnose and treat this type of behavior. In general, what we try to do is to give them the input they need.  Basically, we give them “chocolate.” This meets their sensory need and prevents some of the behaviors that are problematic. If you are in a public place, you don’t want your child running around, seeking sensory input (while you are both embarrassed and frustrated!). Instead, you would want to give him/her the input they need before going out.

There are a number of different types of Sensory Processing Disorder.  I cannot diagnose those, but I do like to help parents understand some of the general principles that may be involved in treatment. One of the main reasons I like to do this is so that sensory issues do not become labeled as behavior problems.

Here is a brief list of some types of behavior that may be related to sensory issues:

  • Dislike of specific textures, including in certain foods
  • Tantrums when their hair is being washed or brushed
  • Can’t tolerate shoes or socks; sometimes they have sensitivity to seams on socks
  • Pain response to loud, unexpected sounds (vacuum cleaners, motorcycles, etc)
  • Everything in the mouth—need for oral stimulation
  • Shutting down in the presence of large amounts of visual information

There is a more extensive list, but these should give you an idea of whether you may want to seek out an assessment for a sensory processing disorder.