Dear Caregiver

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.