A Fascinating Mind

As Reagan, 16 y.o. with Down syndrome (Ds) gets more mature, I become more fascinated with the way she thinks and responds to life. She is quite verbal so I am given a wonderful picture of what she thinks and feels.

Feelings/Emotions

Reagan often tells me she has feelings. It’s funny, at times, because she displays her emotions clearly. I know she has feelings! She verbalizes them quite well. I have no doubt she experiences the whole range of emotions common to humanity. If you’re willing to listen, she will tell you her life history, marked by events that are important to her displaying the joy or sadness (or something in between) that accompanies the events.

Reagan often asks me to tell her the stories of her infancy and toddler years. Those years of which she has no memories - like most of us. She wants to hear them in chronological order starting with her growing inside my womb, her birth and then year by year by birthdays. I tell her the stories which she greatly enjoys, she to commits them to memory and then to retell the stories – great exercises in stretching auditory processing skills! She then tells the stories of which she has no recall with the feelings I project and articulate. The rest of her life story of which she has wonderful recall she adds so that her life story is orderly and makes sense to her just like she is reliving it - emotion and all.

Fascinating.


Thinking

Did you know that people with Ds often think and recall events in pictures? It makes sense because of their relative visual strengths and weaknesses in auditory processing. They have excellent visual memory skills and an amazing recall of people, places and past events. Their strong visual skills are useful in so many ways – learning, in social areas and enhancing independence.


So why do I find this fascinating?

It is who she is. As a mother, I find the way my children think and respond to life fascinating. Because of the intimacy we share, I enjoy the uniqueness of my children. It has been a journey of discovery and joy getting to know how their minds work and who they are.

Mourning. Reagan's mourning is different. She mourns the sister who died before she was born as if she knew her. She mourns the loss of the pets she remembers, a dog and a cat – beloved members of our family. These pets died 7 and 5 years ago respectively. She mourns them in the same way she mourned them when they died. It’s intense, tearful and she verbalizes the same pain and sadness today as she did yesterday, last month and the years since they died.

Changes. I am trying to help Reagan with the changes in her life today. She is adjusting to Kiera being off to college but it is still hard. She has “rain clouds” in her eyes daily. She tears up frequently and expresses great sadness that her sister isn’t here with us.

The Problem

I know Reagan is a concrete thinker. She shows me little in the way of abstract thought.

She knows what time it is and what she needs to be doing.

She doesn’t, however, have a sense of time. It is just something marked by the clock and the calendar.

Today, I opened up Mental Wellness in Adults with Down Syndrome, A Guide to Emotional and Behavioral Strengths and Challenges* by Dennis McGuire, Ph.D. and Brian Chicoine, MD to gain some insights and found some great information that helped me put the pieces together that might help Reagan and found:

Disadvantages of a Strong Visual Memory

Characteristics of memory recall in people with Down syndrome

"Difficulty in linking memories to time
Although people with Ds have exceptional memory for past events, they often have little understand of when these events occur in time – due to the abstract notion of time. Many people with Ds do not have a good sense of recalled events as part of the past or as part of an historical sequence of events

The tendency to relive past memories in the present
It seems that combining their visual form of thinking with the absence of a sense of time results in a unique phenomenon. People with Ds do not seem to remember a past event so much as to relive or experience as if it is happening now – often with the same feelings and emotions experienced at the time of the event.

The tendency to repeat specific memories
Many people with Ds replay certain specific memories over and over. These repeated memories are often memories that elicit strong positive or negative emotions. Given the intensity of their visual memory, they are able to transport themselves virtually backing to relive these experiences."

This is Reagan! Her difficulty adjusting to the changes in our lives and mourning her losses does not interfere with her ability to function. These mourning episodes are brief and then she is done. It is incredibly sad for me to watch but now I understand better why her fascinating mind works the way it does!

*Do not wait until your child is nearing adulthood to buy this book. It is full of insights into our children with Ds too

The Pace

I have always loved an essay by Dennis McGuire, Ph.D, of the Adult Down Syndrome Center of Lutheran General Hospital in Park Ridge, Illinois called The Pace. One of the most valuable lessons Reagan (15 y.o. with Down syndrome) has taught me is to slow down and delight in the little things in life. Moving with her, at her pace, brings many new discoveries and joys. She sees the world and delights in it like it is new every day. What a gift!

While Reagan does not have obsessional slowness, an obsessive-compulsive disorder found in some people with cognitive impairments, she does move at her own pace. A pace where she can take in, process and react to her environment.

It is a slower pace. A pace where beauty flows and God is allowed in every moment. In fact, it is about living in the moment. There is a rhythm to it that I had not known before. Its almost magical.

Interestingly enough, I do not talk to her at a slower rate. We do our school work at a very rapid pace so that she does not get bored. Boring is another "B" word (along with brush and bath) around here. If Reagan senses a "B" word, watch out for avoidance behaviors and mild irritation!

Yes, I have know frustration with the pace...and I ask God to forgive me for being so selfish and small. The pace has blessed me abundantly and I am grateful.

So, we pace our days with her - planning a little more time during activities of daily living and outings to allow for her pace. My life is better for it. It lets us see the little things that might otherwise pass us by. Life it so much less stressful at Reagan's pace. The pressure is off and we are free to enjoy.

The pace - one of the many blessings of having a child with Down syndrome.

Down Syndrome and Challenging Behaviors

If you are a parent with a child with Down syndrome (Ds), you might know our kiddos show higher rates of challenging behaviors than their typically developing peers. Challenging behaviors common to children with Ds include wandering, attention difficulties, inappropriate social behaviors, noncompliance, and compulsive behavior.

Did you know that many children with Ds do not respond to typical parenting styles? As parents, we often use negative consequences (time-out, spanking, punishment) for inappropriate behavior. In many cases, using negative consequences with the child with Ds can exacerbate behavior issues!

Reagan was one of these kids. Like many children with Ds, she has quite the delightful personality. She is kind, thoughtful and affectionate most of the time. She is right there when someone is in need to offer her love and support. I don't think she has a malicious bone in her body but we have faced many challenging behaviors. Challenging behaviors in children with Ds tend to be complex in nature - related to processing/language difficulties, fear of failure/motivation, cognitive issues, lack of choices, etc.

For Reagan, the most challenging behaviors stem from her highly stubborn nature. I think every parent of a child with Ds deals with what appears to be an exaggerated stubborn streak. Negative consequences did nothing to change her patterns of behavior.

As a homeschooling parent, I took our discipline issues very seriously. After all, without control of challenging behaviors and discipline (on all parts) we cannot effectively educate our children at home. Reducing challenging behaviors had to become a priority if we were to continue on our homeschooling journey.

In my research, I found that children with Ds respond better to positive behavior supports which encourage appropriate behaviors. Little things like sincere praise, positive attention to appropriate behaviors, and rewards made a huge difference in effecting changes in behavior.

My parenting patterns had to change to effect changes in Reagan’s behavior. I had to be much more creative in parenting this child to make our home environment more conducive to learning and her behavior outside the home socially acceptable so that learning and social opportunities were more available to her.

I learned about looking at behavior in the context in which it occurs. I learned about A-B-C (Antecedents – Behavior – Consequences) patterns to look for ways to effect changes in behavior.

I learned that ridding a child with Down of problem behaviors often takes more learning trials than it would with a typically developing child.

I learned that you must teach the child exactly what you expect. Most young children with Down syndrome learn little incidentally (by example) - appropriate behavior must be explicitly taught and modeled. Skill building vs. trial and error which can lead to frustration and even embarrassment!

The younger child may benefit from a pictorial guide to refer to when placed in known difficult situations as a reminder of what is expected. In the school age child, social stories are often used to teach social skills to children with special needs but can be adapted to address challenging behaviors in the child with Down syndrome. They are easy to create on a word processor and can be tailored to the unique needs of the child.

I also ran across a book that I recommend to every parent with a child with special needs, Steps to Independence, Teaching Everyday Skills to Children with Special Needs, by Bruce L. Baker and Alan Brightman. This book not only speaks to skill development but has several chapters devoted to behavior and positive behavioral support. The book does not specifically target children with Ds but I have found it to be an invaluable resource!

At 14, Reagan understands negative consequences and I use them effectively as necessary. In the real world there are negative consequences for inappropriate behaviors so she finds them at home too. I think maturity has made a huge difference in her ability to understand the consequences of her behaviors and increase her compliance.

Homeschooling Reagan at home has been quite beneficial in ridding her of challenging behaviors. She is in an environment where behavior issues can be dealt with immediately and consistently. As she has matured and her language comprehension increases, we can discuss various choices she has as she problem solves and the consequences of her actions. She gets plenty of time out in the community - more opportunities for working on developing proper behavior and social skills. At times it has been exhausting - especially in the early years - but definitely well-worth every ounce of effort! She is growing into a lovely young lady.

Reagan, like most of us, is still a work in progress. We continue to work on appropriate behaviors and social skills in the home and around the community. It is said that good behavior and social skills are the keys to success for adults with Down syndrome so we continue working to become the best we can be!