Friday, February 10, 2012

Getting to Know You

"For the LORD gives wisdom; from his mouth come knowledge and understanding." 
(Proverbs 2:6, NIV)

While this blog is typically given over to devotional posts, an online conversation one week ago has spawned some terrific sharing by mothers in Christian community.  During our Special Needs Ministry TweetChat (#SpnMin) we were discussing whether Individual Education Plans (IEPs) are or should be shared with the Children's Ministry at church. (Click here to see the transcript.)  In the course of that conversation, I had mentioned that we have historically used our own little care summary of our son's diagnosis and treatment for schools, churches, extra-curricular activities and even babysitters.  This gives them a brief, understandable way of quickly gaining just what they need for day-to-day life with our son's rare disorder.  Sharing this suggestion inspired mother and homeschooler, Amy Dunaway to share her wonderful version "Dear Caregiver".   Katie Wetherbee, who is also a mother as well as an educational consultant and Key Ministry team member shared her "Meet My Child - Proactive Partnering in One Page" too.  Their insights and strategies are definitely worth your time and review.

Since we can learn and glean specific pieces that we like from various versions of the same type of document, I thought now was the time to share the edition that our family has used for almost 12 years now.  Besides, since I was the instigator with this entire avenue of discussion, I felt I owed people as least that much!  You will find that my care summary for our son puts more focus on the physical than the other two I've linked-up on this post, due to the fact that his chronic disease creates more concerns with its medical nature.  So here goes...
                                                                                                                                                                   

Getting to know
Li'l Mister (name changed to protect the innocent)
Prepared for Smart School
Updated 2/1/12

Li'l Mr's Diagnosis
Li'l Mr has Severe Hemophilia A, a blood clotting disorder and related anxiety disorder.  See attached sheet for further details on hemophilia.  (We attach a brief, plain language sheet that can be found on the internet.)

Li'l Mr does NOT have HIV, hepatitis or any other blood-borne disease.

What his illness looks like in him
Li'l Mr's main problems with hemophilia tend to be joint bleeds in his ankles and in his knees, hematomas (raised, hard bruises) from bumping his head or body, and recurrent nosebleeds.  External cuts are not usually an issue.

When he gets a joint bleed, he may limp, express pain, and the joint will be swollen and hot.  For example, his ankle may look like an old lady with bad water-retention problems.

When Li'l Mr bumps his head hard enough to cry, you will typically feel a large, swollen "goose egg" on his head.  A rule of thumb to follow is that if the object he hits (with any part of his body) does not move, you have need for some concern.

He may often look bruised.  This is just part of his disorder.

Li'l Mr's Limitations
He can play sports and games like most other children.  However, there are some he should avoid.  Football, wrestling, gymnastics and other high-impact sports are not activities that he is medically able to participate in.  If he has any sort of physical accident, although it may not be an emergency, his parents need to be notified.  We recommend that another student helps him to the health room if there is a nosebleed.  You will need to call one of his parents to bring a special medication to help aid the cessation of either mouth or nose bleeding in the health room.  Whenever you are in doubt about anything, please feel free to call his parents any time!  We really don't mind!  Most days, you will not even remember that there is anything different about Li'l Mr.

If our son tells you that he is in physical pain or thinks he is having a bleed, please take him seriously.  The most serious, life-threatening bleeds you cannot see externally with your eyes.  Please allow us or the doctor to make the determination if he is "faking it".

PLEASE TREAT LI'L MR LIKE EVERY OTHER CHILD.  We have gone out of our way to avoid babying him or being overprotective.  He really is just like other kids in most ways.  We are happy that you are willing to work with us and learn about our child's disorder.

Li'l Mr's Emergency Protocol
In the event of emergency, first call his mother.  If unable to reach his mother, call his father.  If the emergency consists of severe injury or a head trauma, call 911 first then his parent(s).  In the event of an ambulance transport, please be sure to give the EMT his medication on hand (ie his Factor bag).

Confidentiality
As a family, we are very open about talking to people regarding his diagnosis.  However, it is up to Li'l Mr as to whether or not he wishes to share his health status.  Sadly, it is not uncommon to have him be excluded by parents or other students out of ignorance or fear.  Please encourage anyone with questions or concerns to contact us directly.

Thank You,
Li'l Mr's Parents
866-555-1212 (Home)
999-555-1212 (Mom's Cell Phone)
899-555-1212 (Dad's Cell Phone)
                                                                                                                                                                   

Some points to note with this format:


  • It can be easily adapted for an overview of any chronic illness like diabetes, juvenile arthritis or the like.
  • You are giving personnel information that they need to know rather than bogging them down with details and labels that may not be necessary.
  • Additionally, you are giving a practical look at what daily life with this diagnosis will look like for the recipient of this page.  The psycho-social component can be especially helpful with a physical diagnosis.
  • Making those caring for your child aware that you don't mind them getting in touch with you is a BIG deal!  Often caregivers worry that they may be bothering you if they make contact.
  • In a school, it is STRONGLY suggested that you do both an inservice and/or have a 504 plan or IEP meeting around this information.  This page will merely be a brief leave-behind to help jar people's memory or for convenient use.
  • This is a terrific format to use with a babysitter or in a Sunday school setting with a child who has this type of special need.
My prayer is that this blesses you.  Many of the difficulties or challenges we can face as parents of these terrific kids can be the direct result of poor flow of information.  Be a wise advocate for your child and communicate with people in a way that will make it easy for them to grasp the essential things you are trying to convey.  This will result in you being found to be a wise steward of the precious gift God has entrusted to your care! 

Pray:  Lord, grant me Your wisdom as I put easily accessible information down on paper for my child.  Help me to include only what You advise me is necessary and good for others to help him.  Make me a faithful steward of this irreplaceable gift!

*For further reading:  See Sharon Fuentes' insights on the "One Pager" in her outstanding book THE DON'T FREAK OUT GUIDE TO PARENTING KIDS WITH ASPERGER'S

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