The Casserole Society

HOW CAN I SUPPORT A CAREGIVER OF SOMEONE WITH SPECIAL NEEDS/CHRONIC MEDICAL ISSUES?

Support

By: Cara Koscinski ,The Pocket Occupational Therapist

*Re-Printed with permission

The old adage says, “You never know what happens behind closed doors.” Everyone has struggles and triumphs. Some deal with their situations more quietly than others. Raising a child with special needs or dealing with chronic illness can bring tremendous joy for families as their child reaches his goals and takes baby steps toward a more functional life. On the contrary, there are many “bad days.” The amount of stress parents must deal with on a daily basis can be great. The same may be true when you find out that someone in your life (or even yourself) has a chronic medical condition. The fact is, chronic medical conditions and disabilities can change every day. Just when you feel you’ve got a handle on things, circumstances change. There may be feelings of isolation and helplessness. Often times, we think “No one knows what I’m going through.” These feelings are normal and are expected. Having a support system in place is critical in dealing with trials we face.

Our society has been trained to be supportive in the short term. For example, when someone has surgery, we bring them a meal and a card or flowers. As a therapist, I call this the “casserole effect.” Yes, it’s my own term and I’ve used it for years. The patient is expected to make a full recovery and everyone moves on with life and their own business. Here’s another example: A greeting such as, “How are you doing today?” can be a formality in our society. The greeter may not want to know how you are doing and if you’d begin to tell him, he’d probably look at you like a deer in headlights. Everyone wants to move forward and deal with their own problems. No one wants to hear about yours-repeatedly. So, what to do when you’re dealing with a chronic illness and things just don’t “get better.” Most families lose friends and even some family but there are a few faithful people who stay for the long haul.

As an occupational therapist, it’s my job to look at the person as a whole and to assess how disease and disability affects each person’s daily life. Since every person is different, every person experiences things in a different way. Hopefully you or someone you love may benefit from reading the following lists.

The DON’Ts of providing support:

1) Don’t make promises you cannot keep. Do not offer to help if you do not mean it. Remember that someone may be counting on you.

2) Do not compare your situation to theirs. EVERYONE is different and there is no need to talk about yourself while the other person is trying to vent or lean on you for support. It is extremely irritating to me when I am speaking about my child’s medical procedure and the listener begins to complain about her own paper cut.

3) Do not make a food that contains any allergen/food someone cannot tolerate. I can think of nothing less considerate than making a meal with nuts if a child in the household is allergic to them.

4) Do not say that the illness is in the person’s head or that they are faking it. *Even if you think it….keep it to yourself.*

5) Do not give medical advice or treatments you’ve seen on television that are “cure-alls.” Leave the medical treatment/information to the person’s care team and medical staff.

6) Do not belittle someone when he/she is having a bad day. Just be a quiet listener and offer hugs, a listening ear, or kind smile.

7) Do not ask how things are going or how someone’s day is if you do not have the time to listen. It’s extremely rude to ask as a formality when someone else is hurting and could use a listening ear.

8) If you cannot say anything nice-do not say anything at all. Rude, hurtful, or thoughtless comments can cut deeply.

9) Do not compare the person’s illness to someone else who you know has something similar. Most likely, there will be lots of similarities from person to person in disease symptoms BUT the difference is how the symptoms affect the person’s daily life.

10) Do not appear frustrated when the person is having a bad day. Some days are good and some are bad. They are sporadic and not at all predictable. The person with the chronic condition wishes for good days too, believe me!

Here are the DOs in providing support:

1) Try to listen-whenever necessary. Be a quiet listener without offering advice. A shoulder to cry on or laugh with is of utmost importance.

2) Send random messages of support, texts, or e-mails. It is great to know someone’s thinking about you.

3) Learn about the illness or disease and ask how it specifically affects the family. Showing you’ve researched can show thoughtfulness. (Be careful not to offer medical advice, though. Researching statistics on the disease or it’s symptoms is helpful).

4) Volunteer to do errands. It’s easier to volunteer for specific tasks, “I’m going to the grocery store, do you need me to pick up anything for you?” “I’m driving past the restaurant; may I pick you up a meal?”

5) Offer to go to an appointment or therapy session. Moral support is priceless.

6) Get a gift certificate for the caregiver to help relieve stress. This includes a magazine subscription, massage, manicure, etc.

7) Do ask about the person’s health or personal situation before you ask them for a favor. It’s not all about what YOU want; it’s about being considerate and caring.

8) Offer to babysit or take the children out to a movie or the park. The break from caregiving can do wonders!

9) Do ask if there’s anything you can do for them today. Things can change quickly and an offer made last week may not apply to this week’s issues.

10) Do avoid gossip about the person involved, family circumstances, and any other personal information. Gossip adds to the stress of the situation and it has negative results.

Please remember that you have the ability to create or negate chaos in someone’s life. I’d like to encourage you to be the positive energy in someone else’s life. You never know, that somebody could someday be YOU going through an illness or disability.

About the author: Cara Koscinski has her Master’s degree in Occupational Therapy. She is the author of The Pocket Occupational Therapist-a book for caregivers of children with special needs. She is also the owner of Route2Greatness, LLC-a company providing OT consultations and products for children with special needs. Cara is the proud mother to two sons with autism spectrum and sensory processing disorders. She has systemic lupus and strives to find the positive side of life. You can visit her site for more information at www.pocketot.com

(c)The Pocket Occupational Therapist

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Autism with a side of NORMAL….

Beautifully madeOn any given day I am like most moms.   I help with homework, do laundry, and tuck my sweet boys into their beds.  To look at  my family, you’d think we are just like everyone else.  Two kids, two cars, decent house, clean clothes, etc.  The difference is what you DON’T see behind closed doors.  My two boys have high functioning autism.  They both look like every other kid in the neighborhood. They love to have fun and are loving children.  However, every little step that they take is not at all without effort.  They both have had extensive hours of speech, occupational, and physical therapy.  I have put voluminous miles on my car going to and from meetings and therapies.  In addition we participate in what’s called “ABA,” which means applied behavior analysis -the use of techniques to bring about meaningful and positive change in behavior.  What this actually means is that we have a team of therapists whose job it is to work with my boys to teach them skills that most children without special needs learn automatically. This may include conversational skills, social skills, or gaining independence with daily living tasks.

We have had ABA for over NINE years.  I have to say that it’s not at all NORMAL to have people following you/your child at home for several hours a week.  I’m not saying that I am opposed to any part of the therapy, but that it is a huge intrusion of our personal privacy and space.  In addition, the therapists come to the store, school, and on any errand that the kids and I go on.  They follow us with a little notebook or clip board and I sincerely feel as though I’m on a reality TV show.  Sometimes, the looks we get from others in public are also very uncomfortable.  Throughout the years I have become used to traveling with an entourage of therapists for the kids.  BUT it never feels comfortable or what I envision “normal” would be.

Being the parent of a child with a disability or special need means that you are automatically traveling on a different path than you had expected.  My husband and I never planned on having this life BUT we would do it all over again if we were asked to.  We have a unique story and experience that has built our character and has enriched both of us.  We have learned that every little thing our boys do has come with great work and teaching.  Every baby step is taken with colossal effort for all those involved.

Our hope is that our boys will be functional and productive members of society.  Most importantly, that they will be happy and feel that they are making a difference in the world.  My husband and I get tired yet feel re-energized when our boys do something that we were told they would NEVER do.  We feel blessed beyond measure to have this life.  To those of you at the beginning of the journey….keep a journal and document where you started.  It is by journaling that you will have a real record of those little miracles.  Sometimes we forget where we came from and it’s a beautiful thing to look back at your original goals and put the word “MET” next to them.  Get support from other caregivers who are going through similar therapy.  You will truly be able to empathize with each other.

The moral of this post….DO NOT MAKE ASSUMPTIONS based on appearances. Our NORMAL looks quite different than your NORMAL.  Wait, there’s no such thing as NORMAL!!!!

By- Cara Koscinki MOT, OTR/L 

Author of The Pocket Occupational Therapist- a handbook for caregivers of children with special needs.  Questions and answers most frequently asked to OTs with easy to understand answers and fun activities you can do with your child.  Order anywhere books are sold.  www.pocketot.com