7 Common Behavior Issues In Children With Down Syndrome And Tips To Manage Them
Every individual with Down Syndrome is unique, but there are commonalities we often see especially when it comes to behaviors. These behavior issues can be frustrating for parents, teachers, and other caregivers.
Some, such as elopement, are downright dangerous. They can also interfere with our children’s ability to make and maintain friendships which are really important for overall well being.
Hey Mama Bears, full disclosure here. There are affiliate links in this post so if you click on the link and buy the product I will earn a small commission. Now that we’re clear on that let’s get back to rocking life with special needs!
There are important reasons to manage behavior problems in our loved ones with Down Syndrome but often we’re at a loss of how to go about it.
Since behavior can be a huge source of stress for special needs Moms I’ve decided to write a three part blog series about it. This post is #2 in the series.
By the end of the series you’ll be better equipped and hopefully empowered to rock any and all behaviors you may encounter with your child.
If you haven’t read the first post in the series…
6 Brain Differences In Your Child With Down Syndrome And How It Impacts Behavior
be sure to check it out!
When Max was young Hubby and I worked with licensed behavior therapists to learn behavior intervention techniques.
Mama Bears, it was hard work.
Behavior management is tough. You have to be super consistent, it requires a lot of effort, and you have to mean what you say and follow through.
So, if you say you’re going to take all electronics away for the rest of the day if they don’t do something you better follow through on that consequence if they don’t do it.
Hubby and I have learned having a positive relationship with our children is SUPER important.
A child who doesn’t feel connected, secure, and loved by their parents will communicate that and behavior is a form of communication.
Having a strong parent-child relationship will help parents as they navigate how to address behavior issues.
Not all parents have access to behavior therapists like we did and for those parents I’ve discovered a fabulous book written by David Stein called Supporting Positive Behavior in Children and Teens with Down Syndrome.
This book is a MUST have!
Dr. Stein is a Down Syndrome behavior guru. The book came out in 2016 so Max was already 9 years old when it came out. Since Hubby and I had already been working with behavior therapists for years we knew a lot of the stuff but there were still great nuggets of information.
In his book, Dr. Stein talks about the brain differences in people with Down Syndrome so we can understand why our children may do the things they do.
He then talks about some of the more common behavior issues seen in children with Down Syndrome. This is what we’re going to focus on today along with a few tips and tricks to manage them.
First though, I want to review the two mindsets Dr. Stein recommends we as parents change when it comes to our thoughts on our child’s behavior.
The first one is not to view undesirable behaviors as intentional.
Our children really didn’t wake up and decide they were going to ruin Mom or Dad’s day by eloping in the parking lot. Rather we need to think of behavior as a form of communication. This helps us respond in a more constructive manner.
Secondly, behavior management is not intuitive.
When we’re super frustrated and want to scream and punish our child for misbehaving this is when they need a hug and a calm parent the most.
Common Behavior Issues In Children With Down Syndrome #1: The Flop and Drop
In his book Dr. Stein calls it the “stop and flop” but when getting together with all of my fellow Mama Bears we always called it the “flop and drop”.
I am well acquainted with the flop and drop because Max was a flopper.
I say he was a flopper because as children with Down Syndrome become older the flopping will usually stop and it will turn into task refusal. Max is a teen now so rather than flopping and dropping and refusing to do something he remains upright and refuses.
The flop and drop tends to occur with transitions.
Sometimes you can anticipate when a flop and drop may occur such as when it’s time to leave a birthday party.
Who wants to leave a fun party?
Other times you may not.
Perhaps it’s time to leave for soccer practice and your child LOVES soccer. You think it’s going to be smooth sailing to get your child out the door.
NOPE!
Big ol’ flop and drop before soccer practice. You’re left scratching your head asking yourself…
Why does this happen?
Dr. Stein tells us to remember the brain differences in people with Down Syndrome.
If processing new information is difficult and remembering that new information is even harder then something new or different from what you were doing can be scary.
Also, remember the differences in motivation and the gas tank theory. New tasks require energy and effort and can be hard. If our children with Down Syndrome already have a lower motivation they’re not really internally incentivized to take on something new.
Plus, because they use up more “gas” to do tasks they may not have much gas left in their tank!
So when they flop and drop it’s their way of communicating to you “I don’t know what’s coming next and I’m scared.”
Or “I don’t understand.”
Or even, “I’m tired and I need a minute.”
How To Manage The Flop And Drop Behavior
We can manage the flop and drop better if we understand why it’s occurring.
If it’s occurring because your child has difficulty with transitions in general then techniques preparing your child for what comes next may be effective.
Reminders
Max does struggle with transitions. They’ve always been super tough for him. We’ve found he needs verbal reminders of an upcoming transition with most things. We start giving him the heads up around the 10 minute mark.
Examples of this are…
Your child is playing with their toys but it’s going to be dinner soon. You start preparing your child for this transition by saying “Max in 10 minutes it will be dinner time. We’ll put your toys away and eat.” After 5 minutes have gone by you give another reminder saying “Max in 5 minutes it will be dinner time. We’ll put your toys away and eat.”
You can adjust this to your child’s needs. Some children may need you to start telling them about a transition 20 minutes before it’s going to happen or they may need more frequent reminders.
Some children need the verbal reminders but also benefit from a visual reminder too. Setting a timer that they can reference can be helpful. If it makes a sound when the time runs out that’s an auditory cue that can help our kids with transitioning.
You can set a timer on your phone or I-pad. I’ve seen timer apps specifically for kids with fun designs. You can also use your stove or you can go out and buy a physical timer. Physical timers can have sand, colored oil, or whatever they use in lava lamps to count down the time or there are ones that look like the oven timer my Mom used when I was a kid.
Visual Schedules
Help your child understand what’s coming next or what their day is going to look like with a visual schedule. Max always wants to know what comes next so he’s a big fan of schedules.
Examples of this are…
Your child struggles with transitions at school so in the morning they are given a small schedule of what their day is going to look like. They carry it around with them or keep it at their desk so they can reference it when needed
Your child struggles in the morning with getting ready for school so you create a morning routine schedule they can reference and mark off as they do the task such as brushing their teeth and eating breakfast.
Max’s morning visual schedule. The visual schedule increased Max’s independence and made the morning routine run smoothly.
Remember, our children with Down Syndrome can struggle with memory. That’s why Max has a small personal schedule he keeps at his desk and carries with him at school. Looking at a schedule in the morning is great, but by mid-morning he may have forgotten what comes after lunch.
Incentives
What if your child flops and drops because they were doing something super fun and it has to end?
Examples of this are…
Your child is at a birthday party and it’s time to go but your child wants to party on like Garth and Wayne.
You're having fun at the park but you’ve been there for over an hour and it’s getting close to nap time. It’s time to go.
Your child is watching The Wiggles on their I-pad and they don’t want the Wiggly party to end.
This is when I break out an incentive.
Your child doesn’t want the fun to end and who can blame them! Having an incentive combined with reminders may be just the ticket to prevent a flop and drop.
For things like a birthday party and the park I often think ahead and come prepared. Meaning, I have a snack and Max’s I-pad waiting in the car.
Typically, I’ll start giving Max reminders when there’s about 30 minutes left until it’s time to leave. As we near the 10 minute reminder I tell him we’ll leave in 10 minutes and in the car he can watch his I-pad and eat a snack.
I always pack a highly preferred snack such as pretzels or goldfish crackers. Baby carrots just won’t cut it in this kind of situation.
I know incentives, rewards, or whatever you want to call them can be controversial in the parenting and education realms. They have always been a big part of our behavior management strategy with Max. They work for us.
Dr. Stein who has studied behavior in children with Down Syndrome also recommends them.
Think back to the brain differences in children with Down Syndrome and how it impacts their motivation. Plus I know I would be less inclined to get up and go to work every day at my day job if I didn’t receive a reward…ahem paycheck, every two weeks.
Now, if we’re at home and Max is Wiggling out to the Wiggles I’ll give him reminders as usual. If it’s appropriate I’ll have a snack waiting for him and at the 1 minute mark I’ll tell him about the snack waiting for him at the table.
In a scenario where he’s watching the I-pad at home and he has to transition to a non-preferred activity such as doing chores or homework I’ll break out the First-Then board.
First-Then Board
A first-then board is a visual support. It lets your child know what the expectation or task is and what will follow it.
I use the first-then board so Max knows there’s an expectation such as he has to do his homework, but after that he gets to do something fun like watch his I-pad.
This visual support helps with structure and predictability. It allows him to understand what’s expected and what will follow. Not only that, it provides motivation. He knows once he does his chores he can watch the I-pad.
First-Then Board. A visual to help a child understand what’s comes first and then after.
This will not work if there are two non-preferred activities on the First-Then board.
Max is not going to be motivated if first he has to do chores and then he has to do Math. Math is a subject he struggles with and thus does not like. Now, if Max loved Math then sure!
First-then boards do not have to be fancy. We use one that our behavior therapist made. It has velcro and pictures of non-preferred and preferred activities that we stick on the board. As Max has become older I’ve used a white board too. I’ll even verbally tell him first chores then I-pad.
Common Behavior Issues In Children With Down Syndrome #2: Elopement
Elopement is when a child runs away from a parent/caregiver or wanders off when a parent/caregiver is distracted. Nothing gives a parent more gray hairs than a child with Down Syndrome who loves to elope.
Parents who haven’t ran in years will suddenly be able to qualify for the Olympics as they race after their child.
Thankfully, Max did not elope a lot. I do recall one time when he was about 4 years old he suddenly took off in a busy parking lot.
Mama Bears, I have never ran so fast in my entire life! I am not a runner, but there I was channeling Usain Bolt in the Target parking lot.
When I finally grabbed him I was what my Gramma would call “spitting mad.” I was so mad I refused to look at him and I was afraid of what would come out of my mouth if I opened it so I said nothing. I marched his little butt to the car and strapped him into his seat and we drove home in silence. Thankfully I had the steering wheel to hold onto because my hands were shaking so bad.
Apparently, I unknowingly handled the situation as Dr. Stein recommends.
How To Manage Elopement
Dr. Stein recommends we use the respond but don’t react method.
Respond But Don’t React
Obviously elopement or bolting as some people call it is a very dangerous behavior. We absolutely have to respond and not ignore the fact our child is running through the Target parking lot.
Here’s the kicker though, when we finally catch up or find our child we do NOT want to be super animated and engaging.
For most of us when our child elopes and we finally catch up to them our natural response is going to be very animated.
We’ll either be yelling or perhaps crying. We’re going to be looking them in the eye and our faces are going to be animated because we’re experiencing some very strong emotions at that moment.
If you’ve read Dr. Stein’s book or my first post in this behavior series you know this type of reaction is very rewarding to your child because it’s a very strong social response.
Even though you’re trying to discourage your child and your words are saying “No, don’t do that” they’re not processing what you’re saying.
Have you ever watched Charlie Brown?
You're the teacher and all your child is hearing is “Mwah mwah mwah.” They’re focusing on your very strong and exciting response. It then becomes a fun game for them
Token Board
Max didn’t elope a lot but when he did it was usually when we were out in the community. From the age of 15 months until he was about 8 years old we rarely left our home without a token board.
A token board is a form of positive reinforcement where Max would earn tokens for following the rules and once he earned all of his tokens he was given a reward.
Max’s token board. A form of positive behavior reinforcement. He would earn tokens with good behavior and receive a reward once all token were earned.
Before we would head out into the community we would review the expectations with Max.
Stay with Mom and Dad
No hitting or kicking
No yelling
These were the basics and as his behavior improved so did the expectations. As we would get out of the car or leave a store I would review the rules with Max. If he held my hand and followed the rules in the parking lot he would earn a token.
If your child elopes from your home my heart goes out to you!
We never had to deal with this, but I do know of some families that did. Consider investing in door alarms and motion sensors that tell you when someone has left the room.
Common Behavior Issues In Children With Down Syndrome #3: Physical Aggression
Physical aggression includes hitting, kicking, biting, etc. In general, I do not feel our kids are more aggressive than any other kid. They do face challenges that others who don’t have Down Syndrome do not.
These challenges are very likely the reason they resort to physical aggression.
Oftentimes Max would hit or grab when he became frustrated because he could not effectively communicate something.
We didn’t understand what he was saying or what he wanted and he’d act out.
We also ran into an issue at school. Max would want to play with another child in his class and didn’t know how to express that. He would resort to grabbing the child by the arm and dragging them somewhere or giving a hug that was more like a tackle.
He would also resort to hitting when he became overstimulated.
Obviously, hitting must be addressed. If there’s another child involved, remove the child from the situation immediately.
How To Manage Physical Aggression
The best way to manage physical aggression is to understand why it’s occurring. Once you know why you can help your child so it’s less likely to happen again.
Give Your Child A Voice
A lot of the time Max would become physically aggressive because he couldn’t effectively communicate and he’d become frustrated.
Giving your child a way to communicate is key.
There are many ways to achieve this and which method you choose will depend on your child. Augmentative and alternative communication can be achieved using many different things. Also, one way to communicate may work in one type of situation but not another.
In Max’s toddler years we taught him sign language. Once Max learned sign language we noted a decline in his undesirable behaviors.
Of course, in order for this to work Max can’t be the only one to understand sign language. His teachers, his aide, and the kids in his class all learned several basic signs too.
Children with special needs may use an I-pad with special apps on it, PECS (picture exchange communication system) which allows kids to communicate using pictures, and there are dedicated speech devices such as the NovaChat.
We also found Max would become physically aggressive when he was overstimulated. By giving him a way to communicate he could tell us when he was becoming overwhelmed allowing us to remove him from the situation for a short period of time.
Max had a “break” card he could point to or hand to his aide when he was getting overwhelmed. When he would do this he and the aide would go to a quieter area or room and the aide would set a 5 minute timer. This gave him 5 minutes to decompress before going back in.
Respond And Remove Your Presence
One of the things our children want most in this life is…US!
Yes!
Our children want our love and attention.
They want us to engage with them and play with them. Whenever Max would hit Hubby or I we’d respond by saying “No hit” and then we’d remove ourselves from him.
Remember, big reactions are highly rewarding to our children even if they are negative reactions.
We’d remain calm and keep our language simple because Max wasn’t going to process a lecture from us on why we don’t hit. “No hitting” or “No hit” is absolutely fine and then “ignore” your child for a short period of time after.
After a little while we would go back and engage with Max again. We’d be sure to give lots of verbal praise if he was playing nicely with us and not hitting.
Max learned he received lots of praise for playing nicely but when he hit he didn’t get a big exciting reaction from Mom and Dad and he lost our attention and engagement.
Common Behavior Issues In Children With Down Syndrome #4: Stimming
What is stimming?
Stimming is shorthand for self-stimulatory behaviors. Dr. Stein writes these behaviors do not serve a particular function but are “self-reinforcing.” Meaning it feels good. Examples of stimming are flicking fingers in front of one’s face, flapping hands, and rocking back and forth.
Stimming is a self soothing behavior. It helps children manage overwhelming sensory information.
Max stims after school. He has a train table with marbles on it. He rolls the marbles back and forth over and over and over again. He does it for about 30 minutes and then he is usually ready to engage with the family.
Dr. Stein recommends not worrying about stimming unless it’s getting in the way of your child living their life.
For example, if Max came home from school and the ONLY thing he wanted to do for the rest of the night was stim. Not eat dinner, talk with his family, play with the dogs.
How To Manage Stimming
I agree with Dr. Stein. If stimming is not interfering with your child’s ability to live life then I would let it go. Sometimes it does interfere though. For example, at one point Max was stimming a lot at school and it was interfering with his school day.
Restrictions
When stimming starts to interfere with your child’s ability to live life then some restrictions need to be placed around it.
When Max was stimming too much at school they removed things he liked to stim with which included long pencils. When he needed to stim they would set a timer for 5 minutes. He would be allowed to stim for that 5 minutes and then he had to get back to his school work.
Building stim breaks throughout his day helped decrease the amount of time he spent stimming when it wasn’t appropriate.
Common Behavior Issues In Children With Down Syndrome #5: Self Talk And Imaginary Friends
Dr. Stein writes particularly as they become older our children may engage in self-talk and some seem to return to imaginary play with imaginary friends.
Max is now in his teen years and we’ve definitely noticed the self-talk.
Max loves the puppy bowl. He’s always “recruiting” dogs we come across out in the community to join his “team.” Even after the recruited dog is long gone Max will be sitting there by himself and I’ll hear him say “You want to join my team? Yeah, OK.”
It’s like he’s replaying the previous conversation in his head or thinking about it but he’s also reenacting it too. He will also do this with music videos or skits from TV shows. It’s not uncommon for him to reenact an entire Wiggles skit.
Dr. Stein reassures parents who are concerned their child may be hearing voices or seeing things that are not really there is rare in kids and adolescents with Down Syndrome.
Rather, as the world is a complicated place and becomes more complicated as you become older, similar to stimming, our loved ones with Down Syndrome find self-talk and imaginary play calming and a way to process.
Also similar to stimming if it’s not interfering with their ability to live life don’t worry about it.
How To Manage Self-Talk And Imaginary Play
Self-talk is very common in people with Down Syndrome and the large majority of the time it is not a sign of psychosis. It can be calming and it’s their way of processing what is going on and making sense of things. Think of it as your loved one with Down Syndrome “thinking out loud.” It actually serves a great purpose for them.
Redirection
If you need to step in while your loved one is engaging in self-talk or imaginary play try redirection. Ask them to help you do something or engage them in a conversation.
Common Behavior Issues In Children With Down Syndrome #6: Insistence on “Sameness”
There was a time we were concerned Max had OCD because he insisted on certain things being a certain way.
Our basement door always has to be closed and the top of his dresser always has to be clear of clothes.
In the grand scheme of things these are not bad things. I mean it’s nice that he puts his clothes away rather than leaving them on his dresser and the basement door really should be closed especially when he had a toddler brother who could easily fall down the stairs.
Dr. Stein writes like many individuals with Down Syndrome, people with OCD also often like things just so. That being said, people with OCD typically believe on some level if they do not do this particular task a certain way something really bad will happen. That’s the “obsessive” in OCD.
He writes OCD can and does occur in people with Down Syndrome, but it is much less common than the insistence on sameness and preferring predictability and order. Most people with Down Syndrome do not have the accompanying thoughts of something terrible happening.
How To Manage “Sameness”
Similar to stimming, self-talk, and imaginary play, this is one of those scenarios where it’s not an issue unless it’s getting in the way of someone’s daily life.
Building In Flexibility
This is where you have to use your judgment and what works for you and your family.
If the basement door is left open and Max wants to close it we let him. I also let him dictate things in his own room such as keeping the top of his dresser clear of clothes.
When it comes to the rest of the house though I do not let him insist on sameness because we all have to live here.
We’ve also found Max doesn’t like it when the “sameness” of the days is interrupted. Max does not enjoy vacations as much as everyone else because it’s a change in his routine.
We have to prepare him by looking at pictures or videos of where we’ll be going and staying. Once we are on vacation Max does enjoy it. We keep taking vacations even though there’s extra work involved because it’s another way to build in flexibility.
Common Behavior Issues In Children With Down Syndrome #7: Problems With Boundaries
Our loved ones with Down Syndrome may struggle with understanding boundaries. Many have problems understanding “stranger danger” as well as impulse control such as not running up to strangers and giving them a big hug.
Dr. Stein writes it’s not surprising our loved ones with Down Syndrome may struggle with these things given they tend to love people and social attention as well as struggle with executive function and impulse control.
How To Manage Problems With Boundaries
Visuals, visuals, visuals. This is yet another example of how visuals are our friends and quite helpful.
Visual Supports
Our behavior therapist made a visual with Max in the center and then enlarging circles around him. Each circle described the appropriate physical contact and interactions for those inside that circle.
The first circle was labeled with hugs and kisses. The second circle was labeled giving high fives and waving, etc. There were pictures of people in his life such as Hubby, myself, his siblings, as well as his grandparents. There were pictures of teachers and kids in his class. There were also pictures of strangers.
Max was handed a picture and asked to place the person in the appropriate circle. Within a couple of weeks of doing this regularly we noted an improvement in Max’s understanding of social boundaries.
Social stories can also be very useful to help our children understand boundaries. Whenever possible using a social story that has a picture of your child with Down Syndrome and actual people in their life.
Techniques To Manage Common Behavior Issues In Children With Down Syndrome
So there you have it Mama Bears!
7 fairly common behavior issues that you may run into with your child with Down Syndrome as well as tips and tricks on how to manage them.
If you enjoyed this blog post then you should check out…
6 Brain Differences In People With Down Syndrome And How It Impacts Behavior
Positive Parenting Solutions For The Special Needs Mom
How To Deal With Temper Tantrums: A Guide For The Special Needs Mom
Dandelion Tribe Takeaway: 7 commonly found behavior issues in our loved ones with Down Syndrome are #1 Flop and Drop #2 Elopement #3 Physical Aggression #4 Stimming #5 Self-Talk and Imaginary Friends #6 Insisting on “Sameness” #7 Problems with Boundaries
Mama Bear Share: Which behavior issues have you struggled with?
