Category: Children with Special Needs

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.

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.

Why Do They Do That? Because It Works!

Very often, parents ask me why their children engage in specific behaviors.  Many times, these are children with special needs, but many of these suggestions apply to all children.  I have a list of seven things that can explain why children do what they do.  Here’s the beginning of my list.

#1.  Children do what they do because IT WORKS!

They get what they want, they get attention, they get control of the whole household.  It works.  Let’s look first at the attention part, because I think parents generally don’t think about the power of their attention.  Here are some general principles.

  • Good attention (praise) and bad attention (yelling, punishing) serve the same function. You see them differently, but your child does not.  In fact, negative attention is often much stronger than positive attention.  Think about it.  When you praise your child, you may focus about 10 percent of your attention on him/her.  When you are angry, it is like a laser, with 150% of your attention directed to your child.  As a result, negative attention may be more reinforcing than positive attention.
  • In addition, when you are focused on one child, no one else is getting attention. Other members of the family are not getting their needs met.

In addition, you will need to consider the essential question—“Who is in control?” If one child is able to act in such a way that he/she is in control of the family, then the behavior has “worked”. It accomplished the goal of controlling everything.

The final reason that the behavior “worked”, is that the child got what he/she wanted. If it was a tantrum about a toy, a TV show or her/his own way, then if the end result was getting what was wanted, the behavior worked.

For Parents

  • Make sure that you are not inadvertently reinforcing behavior by your attention (negative or positive)
  • Make sure that behaviors only “work” if they are ones that are acceptable to you.
  • This is another reminder that parents need to be in control of the household, not children!!

If you decide to placate your children just to keep peace, you will NEVER have peace!  It will never be enough. It is much more important to have parents in charge, even though children may complain, tantrum or act out!  In the long run, parents who are authoritative (not authoritarian) will have the best success with their children.

What to Do When the Break Up Happens

Inevitably, relationships end, even for teens or young adults with developmental disabilities. We need to help them cope with this part of life as well. Often, parents are so relieved that they don’t think to help their child cope with the flood of emotions that occur.

What should a parent do?  There are two steps that need to be taken. Your first step is to “normalize” the situation. That means to help your child understand that everyone who has a relationship has a breakup at some point in  life. I have my patients talk about what siblings or friends have gone through. This validates their experience.  Then, you want to help your child identify his/her feelings.  There are a jumble of emotions that need a word to label them.  You child may feel angry, hurt, betrayed, humiliated and maybe even demeaned. Often there is a sense of not being good enough or not being worthwhile. It is important to get some verbal labels on these feelings. Then you can reassure your child that these feelings, though valid, will get better, but not necessarily quickly.  That is true for everyone.

The second step is to talk about the ways to handle the situation. What are the kinds of behaviors that one follows after breaking up. Here are a few suggestions:

  • Your son/daughter should try to avoid contact the ex.
  • The rule is that when they see each other, “Hello” is fine, but then nothing else.
  • Help your son/daughter contain his/her anger. Accusations and outbursts don’t help anything.  Blame is not helpful either.
  • You can help by modulating your own emotions. Being negative about the ex is not going to help your son/daughter feel better. I think it is far more helpful to respond that this is part of life and that even though you were glad that he/she had a relationship, this is a frequent outcome. And, you are confident that he/she can get through it.
  • Then, after you have dealt with the emotions, teach your child the art of distraction. Make a list of the things he/she likes to do and then suggest that using these can help minimize the emotions. For example, you might want to watch your favorite video or use one of your video games to distract you from these feelings.

Even though these are difficult experiences to go through, they can help your son/daughter learn valuable life lessons.

“Mom, Dad, I’ve Got a Girl/Boyfriend!”

These are words that provoke panic in parents of children with special needs. As these young people develop into late adolescence, parents and teachers confront the problem of relationships within this group. We do know that even though there may be some cognitive and social delays in these students, their emotional development is similar to their non-handicapped peers. They want to be like everyone else, like the people they see on TV. They don’t want to be alone. They want to be valued by someone of the opposite sex. Same sex relationships offer unique challenges to special needs children and I will address that in a future blog post.

Unfortunately, our response to these relationships is often to deny or to try to prevent them. The results are often disastrous. When left to their own devices, these students end up putting themselves at risk, experimenting with sexual behavior.  Some become obsessed with the opposite sex or with engaging in sexual behavior, often inappropriately.  They might be punished, lectured, isolated, or shamed.

In my practice, I like to take a different approach. I like to teach them about the issue of relationships, to help them understand but also to give them some rules to follow. Since these teens have compromised understanding, I like to give them rules. They don’t have to figure anything out, they don’t have to interpret anything, they don’t have to make judgments.  They just have to follow the rule.  It is much simpler and clearer for them.  I also emphasize that if they don’t follow the rules, they clearly are not ready for a relationship.  I also point out that skipping steps is grounds for adults to intervene.

For example, I tell them that there are stages for each relationship. So if a teen is in Stage 1, they have identified someone that they are interested in and the person has indicated interest as well.  The purpose is to get to know someone and to have shared experiences. The rule at this stage is “No sexual behavior.”  You are only at Stage 1.  You are supposed to talk on the phone, go places together but nothing else.

Stage 2 means you have gotten to know this person and you have done many things together.  You have gone to Homecoming or have gone to the movies. You have had a chance to talk regularly on the phone. You know this person.  I often ask my patients to tell me about their boyfriend/girlfriend. If they can’t describe this person’s interests or likes, they stay in Stage 1.  If they have learned some things about this person, they can move to stage 2.  They are now ready to physically indicate that they are “together.”  They do this by holding hands, sitting close to each other, kissing etc., but that is all.  That is the rule. I also like to point out that there are many other ways that we show affection for someone. We may do special, thoughtful things for them, give them gifts, take their needs into account.  Learning these things is important before moving to Stage 3.

Stage 3 is for much more serious relationships. My general rule of thumb is that they have to have been together in Stages 1 and 2 for at least a year.  I tell them that this is the most difficult stage, because they now need to take each other’s needs into account. I like to work individually with the teens to review important issues such as boundaries.  This is a place where I think parents need to be involved in outlining acceptable behavior.  Family rules should apply to these teens just as they do with non-handicapped teens. When parents outline the rules they are comfortable with, the guidance needs to be clear and concrete.

What should a parent do when confronted with this situation?

  • Begin by teaching your son/daughter the stages in relationships. This is not clear in the media or in the other teens your child comes in contact with, so they will need to be taught.
  • Ask your school to develop a similar system so that it can be reinforced in school.
  • Even though this is a difficult topic, you can help your teen to develop healthy relationships that enrich his/her life.

Social Integration? Mainstreaming? Start Early!

Do you want your special needs child to participate in our world? This is an important question for parents to consider, even if your child is still a toddler. Often, parents get overwhelmed in working to find programs, get therapy and cope at home and don’t give much thought to the future. But the foundations of future success start early in life.

Schools talk about mainstreaming for special needs children. Usually, they have children from self-contained classes join with non-handicapped peers in gym, art or music.  Just putting handicapped and non-handicapped children in the same space will NOT be successful in socially integrating these groups! It is not a matter of being together. Having them together with no preparation also gives opportunity for negative interactions.

Preparation for your child should begin very early in life, regardless of your child’s diagnosis. Here are the beginning steps:

  • Make sure your child is noticing people in the environment. When grandparents come to the house or older siblings come home from school, make sure your child looks at them and is aware of their presence.
  • Don’t let your child be self-directed. To learn social interaction, they have to be “other” directed. The best way to start is to be sure your child is parent directed at various times during the day.
  • Children need to learn to respond when spoken to. They need to learn to alert to your voice or their name. Insist that they respond the first time you speak to them.
  • Teach your child to respond to the presence of other children. Make them notice, look at and attend to other children.
  • Do not let them get into the habit of social interaction by annoyance. These are children who go from sibling to sibling (or adult to adult) and solicit attention by interfering with activities or annoying others. This is a hard habit to break and will prevent any positive social interaction.
  • Teach and insist on appropriate behavior. Integration will not work if your child’s behavior is markedly different from the other children’s.

Begin working on these steps now. I realize that this plan involves a lot of parental time.  However, without these steps, your child will not be able to function in the wider world.

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