Saturday, October 4, 2014

No, Sophia!

One of Sophia's favorite books right now is, No, David!, by David Shannon.  Every time we read this book, I can't help myself but to think that this title could easily be changed from, David, to Sophia :)

Behavior problems are something that all parents deal with at one time or another with their kids.  Not obeying your parents, or other adults in authority, is part of the job requirement when you're a kid.  But sometimes behaviors can start to interfere with development and learning.  They can also begin to be disruptive to the family, school or workplace, and may be harmful to the child or adult or to others.

Children and adults with Down syndrome are more likely to have medical problems starting as babies, all the way into adulthood.  So the first step in evaluating a child or adult with Down syndrome who presents with a behavior concern is to determine if there are any acute or chronic medical problems related to the identified behavior.  Some of the more common medical problems that may be associated with behavior changes are:

* vision or hearing deficits

* thyroid function

* celiac disease

* sleep apnea

*gastroesophageal reflux

* constipation

* depression

* anxiety

Evaluation by the primary care physician is important when first noticing behavior problems in children or adults with Down syndrome.

The behavioral challenges seen in children with Down syndrome are usually not all that different from those seen in typically developing children.  However, they may occur at a later age and last somewhat longer.  For example, temper tantrums are typically common in 2-3 year olds, but for a child with Down syndrome, they may begin at 3-4.

When evaluating behavior in a child or adult with Down syndrome it is also important to look at the behavior in the context of the individual's developmental age, not only his or her chronological age.  So even though a child may be 5-6 years old, developmentally they may be more around the age of a 3-4 year old.....causing some behaviors to still be "normal" for that age of development.  Receptive and expressive language skills are also important to look at, because many behavior problems are related to frustration with communication.  Since communication, especially expressive communication, can come later for a lot of individuals with Down syndrome, it is important to help the child/adult find ways to communicate more effectively.

Some common behavior concerns for parents and caregivers of loved ones with Down syndrome are:

* wandering/running off

* stubborn/oppositional behavior

* attention problems

* obsessive/compulsive behaviors

* autism spectrum disorder

If your child is a wanderer, or tends to run off when you are in public places, it can be a very scary thing as a parent.  Sophia definitely likes to do what she wants to do, and when she wants to do it.  Even though Sophia is small,with little legs, that girl can disappear in a matter of seconds!  The one time I lost track of Sophia we were at a department store shopping.  I had her in the cart, belted in, but she desperately wanted out.  I'm a sucker for giving her chances to prove to me that she will indeed follow the rules.  I know sooner got her out of the cart and she darted behind some shelves of clothes.  I waited to see which side she would come out on, but I never saw her.  When I went to look behind the shelf, there was no one there.  I immediately went into panic mode.  I looked all over that area, then began my search around the area close by.  Nothing.  I went to the front to report her missing, scared to death she would make it out the front doors and into the parking lot.  After about 5 minutes I found her on the other side of the store just wandering around, saying "Hieee" to everyone walking by.  Probably one of the scariest moments for me so far.

Stubborn.....that might as well be Sophia's middle name!  She will pull the non-compliant card whenever and wherever she feels like it, and there is very little that anybody can do about it.  Children with Down syndrome are often very good at distracting parents or teachers when they are challenged with a difficult task, or asked to do something they don't want to do.  Right now we are struggling with extreme stubbornness at school.  Apparently Sophia didn't get the memo that you're expected to follow rules, AND learn stuff ALL DAY LONG.

Hi, my name is Sophia.  I like to......SQUIRREL?!!  Oh the good old attention span, or lack there of.  Individuals with Down syndrome can have ADHD, but they should be evaluated for attention span and impulsivity based on developmental age and not strictly chronological age.  Sophia definitely has trouble staying focused and on task.  She is constantly needing cued on what she is suppose to be doing, or what she is NOT suppose to be doing!  Impulsiveness is a real struggle too.  Sophia rarely thinks before she acts.  She just goes or does, and doesn't even consider the consequences.  Maybe this is one of the reasons why I resemble a helicopter....constantly hovering around her 24/7 :)

Obsessive/Compulsive behaviors can sometimes be very simple; for example, a child may always want the same chair.  However, obsessive/compulsive behavior can also be more subtly repetative, like dangling beads or belts when not engaged directly in an activity.  While the number of compulsive behaviors in children with Down syndrome is no different than those in typical children at the same mental age, the frequency and intensity of the behavior is often greater.

Autism is seen in approximately 5-7 % of individuals with Down syndrome.  The diagnosis is usually made at a later age (6-8 years of age) than in the general population.  Regression of language skills, if present, also occurs later (3-4 years of age).  Potential intervention strategies are the same as for any child with autism.  It is important for signs of autism to be identified as early as possible so the child can receive the most appropriate therapeutic and educational services.

So when should a parent or caregiver approach behavior issues in individuals with Down syndrome?  (I'm trying to figure that out myself right now!)  Some things to think about can be:

* Rule out a medical problem that could be related to the behavior.

* Consider emotional stresses at home, school or work that may impact behavior

* Work with a professional (psychologist, behavioral pediatrician, counselor) to develop a behavior treatment plan using the ABC's of behavior.  (Antecedent, Behavior, Consequence of the Behavior)

* Medication may be indicated in particular cases such as ADHD and autism

Intervention strategies for treatment of behavior problems are variable and dependent on the individual's age, severity of the problem and the setting in which the behavior is most commonly seen.  Local parent and caregiver support programs can often help by providing suggestions, support and information about community treatment programs.  Psychosocial services in the primary care physician's office can be used for consultative care regarding behavior issues.  Chronic problems warrant referral to a behavioral specialist experienced in working with children and adults with special needs.

What about behavioral changes in adulthood?  These can be caused by a number of factors:

* difficulty with transitions into adolescence or young adulthood

* loss of social networks

* departure of older siblings

* death of a loved one

* move out of the home or transfer from a protective school environment into a work situation

* sensory deprivation

* either visual (cataracts) or auditory (hearing loss)

* emotional trauma

* hypothyroidism

* obstructive sleep apnea

* depression

* Alzheimer's disease

Any time you ever have any concerns about your child's behavior, talk with the people who are around him or her the most.  See if you can find a reason why they might be acting out differently. Never be afraid to seek help from your child's doctor or other trained professionals.  Every child is different, and every child reacts to the environment around them differently.


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