“Life would be simpler if we could counter the fear of change just by telling people, ‘Change is inevitable, get used to it.’”
(Conquering Fear: Living Boldly in an Uncertain World by Harold Kushner)
Autumn is a time of transition from the warm, sunny days of summer to the cold, cloudy days of winter.
Transitions can be challenging – Are we heading towards something we would prefer not to? Are we going to an unknown situation? Are we comfortable with things as they are and don’t want change? Do we have unfinished things to do and feel anxious about leaving it undone?
We know that many people with Down syndrome find transitions problematic and can be fearful of them. It seems that all the above reasons and other reasons can contribute to a difficult transition. Not knowing what is next, where they are going, or what to expect seems to be particularly problematic for many of our patients when it comes to dealing with transitions.
“The primary goal of parenting, beyond keeping our children safe and loved, is to convey to them a sense that it is possible to be happy in an uncertain world, to give them hope.”
(Too Old Too Soon by Dr. Gordon Livingston, quoted in Conquering Fear by Harold Kushner)
There are a number of ways to help people with Down syndrome with transitions. Some include:
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Make sure the individual is aware of his schedule. Schedules and calendars can be helpful. Many of our patients have a better understanding when pictures are used. This can be done on paper or electronically (such as on a smart phone or tablet).
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Schedule projects that can be completed in the time allotted. Assess what can be accomplished in the time available. Break the whole task into time-manageable segments. Work on completing the tasks in the time allowed. Near the end of the time allotment, give a warning or perhaps have a warning alarm (on a cell phone, watch, tablet, etc.) that informs that the transition time is approaching.
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Provide details as to what the next task or activity involves. This can be done verbally but putting it on a schedule that the individual with DS can refer to is very useful and gives the individual more control of and responsibility for his own schedule.
What if the transition becomes too challenging and the person develops anxiety (or the person develops anxiety for other reasons)? How is anxiety managed?
Consider relaxation techniques such as resting in a quiet room or listening to soothing music. At a National Down Syndrome Congress Convention, I heard about people with DS doing yoga. Some of our patients enjoy and benefit from sitting quietly and writing words or letters repeatedly.
Other ways to relax or reduce anxiety include regular exercise, healthy eating, and getting a good night’s sleep. Limit caffeine.
Spending time with family and friends, doing enjoyable activities, and getting outside in nature are also helpful.
Some of our patients benefit from counseling. “Talk therapy” gives the individual an opportunity to share his concerns and discuss strategies for managing them.
An appointment with your medical practitioner is important. Is there an underlying physical condition that is contributing? Many physical health problems can contribute to anxiety such as hyperthyroidism, sleep apnea, and medication side effects.
When significant anxiety is still a problem, medications may be indicated. We have had success with a variety of medications. Our book Mental Wellness in Adults with Down Syndrome has some recommendations (https://www.woodbinehouse.com/product/mental-wellness-adults-syndrome-guide-emotional-behavioral-strengths-challenges/).
Some medication tips include:
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Is anyone in the family on medication for anxiety? What worked for those family members? Consider using the same medication that worked for other family members.
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If decreased appetite and weigh loss are part of the symptoms, we have found paroxetine to be particularly helpful to stimulate appetite.
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We have found sertraline, citalopram, and escitalopram to usually be weight-neutral (neither weight gain nor weight loss attributable to the medication).
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Benzodiazepines (such as clonazepam, lorazepam or alprazolam) give more immediate relief but have dependency potential.
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Consult with your practitioner to find the medication that is correct for you.