I wrote this several years ago for Reagan’s first extended
time away from home. I think she was
about ten when she went to church camp for the first time. I wasn’t sure how well-schooled her camp
counselor might be in dealing with a child with special needs so I tried to
briefly cover some bases to assist the counselor and ensure that Reagan had the
best experience possible.
I broke down my concerns and what might be important for the
counselor to know into various categories.
I tried to make it simple and easy to read so as not to be overwhelming
to someone who might not know the lingo that we all come to know as the parent
of a child with special needs.
Interestingly enough, her first camp counselor turned out to
be a special education teacher who has a heart for children with Down syndrome. What a blessing that week was for all of us!
I think this format would be easy to adapt to many other
situations where the caregiver or volunteer might not be comfortable without
knowing a little something about our kiddos with special needs such as Sunday
School, youth group or other youth activities.
Dear ______,
Reagan is excited about spending time with you and wants you
to know a few things about her.
Reagan has Down syndrome.
Children with Down syndrome have cognitive delays, speech and language delays and
physical challenges. In getting to know
Reagan, the following might be helpful:
Personhood
Reagan has Down syndrome but it doesn’t define her. She is a child first. She has the same dreams and desires as other
children. She wants to do and
participate with others without a great deal of attention drawn to her or her special
needs. Treat her as you treat all other
children.
Safety
Of utmost importance is safety. Children with Down syndrome are known for
wandering off in the blink of an eye. It
is important to have a pair of eyes trained on her as she participates in individual
and group activities. You might expect
her to wander if she is bored, if the activity is too loud/overstimulating or
if she is upset.
Reagan may make unwise decisions and needs to be watched
closely in new situations – and redirected/corrected as necessary.
Developmental Age
Though Reagan is __, her developmental age is younger. The most important element of her younger
developmental age is that she is a concrete thinker. Therefore, communication should be conducted
in a concrete manner - simple, familiar (but not babyish) language with shorter, concise sentence structure. Idioms, figures of
speech and slang are often meaningless to her.
Speech and Language
Reagan has wonderful language skills and can express her wants and needs quite well. She understands more than she can say.
Reagan’s speech can be difficult to understand at times. Ask her to slow down and try again and she usually corrects any errors.
Memory
Reagan has trouble with her short-term memory. Repeat rules or commands as necessary. Her long-term memory is excellent. Once she knows you and loves you, you will be
her best friend forever.
Processing
Reagan may not fully understand what you want from her at
times - especially in new situations. If necessary, simplify, repeat, and/or rephrase requests.
Behavior
Reagan is generally compliant but has some stubborn moments. It helps to verbalize expectations and what
needs to be done. Reagan will not
understand most nonverbal cues unless they are specifically taught. For example, most children respond to gentle
shoulder pressure to move along. Reagan
will not understand unless you verbalize your expectations at the given moment.
She may need longer to transition to a new activity unless
she is aware of how the day will go. A
few minutes before transition to remind her of what is coming next should help
immensely.
To encourage compliance:
1.
Insist on eye contact when speaking to her
2.
Keep language simple and straightforward
3.
Simplify, rephrase and/or repeat instructions as
needed
4.
Have her repeat what you told her if necessary
Negative consequences are generally ineffective with
Reagan. Gentle, persistent encouragement
is most effective as is “1, 2, 3 magic.”
If Reagan is bored or tired, she may enter into her imaginary
world. It is preferable for her to stay
in the real world but sometimes she needs a break from the demands of stressful
(above her developmental level) situations.
Social
Reagan is a very social child and loves being around
people. She is occasionally socially
inappropriate.
She loves to hug others.
“High fives” or a handshake should be encouraged instead of hugs.
Violating the personal space of others is common. We use the term “personal space bubble” when
referring to a violation and she will respond appropriately by moving away.
Physical
Reagan has fine motor (small muscles i.e. fingers) and gross
motor (large muscles) delays. She may
need assistance with crafts and games.
She generally moves slower than her peers and needs encouragement at
times to keep up with the group.
Reagan is a good swimmer and independent in the pool.
Reagan has a permanent pacemaker and cannot play contact
sports/games.
She wears her glasses 24/7 (except in the pool) and cannot
see without them.
Hygiene
Reagan is independent in self care but may need reminders to
complete activities of daily living.
Church Services
Reagan knows what is expected during church services and is generally
well-behaved. She participates fully and
takes Communion.
Spiritual Gifts
Reagan has been blessed with many gifts which will enfold
before your eyes. She loves
unconditionally and very sensitive to the feelings of others. She has a joyful spirit that is
contagious. All who take the time to
know her will be immensely blessed.
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