Invisible Solider

Dear Solider,

The other day I saw you at the grocery store.  You were chasing your little one around.  A lot.  You looked tired.

"Travis, put that down!!" "Travis stand still!" "Travis stay here!!!"

Then you turned your back to load your groceries and Travis came up to me.  He held his hands up to me and gave me a hug.  Then he proceeded to load ALL the Hershey Bars in my shopping cart (that's a boy after my own heart).  You turned around looking panicked and opened your mouth to yell, but I stopped you.  "He's here!"

You came over looking frazzled and not really in the holiday spirit.  You opened your mouth to apologize to me.  But then you heard laughter and turned around to see your son tickling my daughter.  In her wheelchair.  Two children.  One with Cerebral Palsy and one with Down Syndrome. Your frown turned into a smile as you recognized another invisible solider.  We chatted and laughed about our kids and you took your son home.  I unloaded all the chocolate and checked out.  Your son brought a smile to my face the rest of the day.

You see, not all soldiers are stationed far away.  There are many you see every day.  We don't fight with gun and grenades.  We are your neighbor or even a member of your family.  We keep in the shadows so we can fight for the most important thing in our lives.  Our children.

We fight our own enemies.  We fight insurance, doctors, therapists, and supply companies.  We fight so our children have access to all they need to help them grow and thrive.  Somedays we even fight the world so they can see how wonderful and amazing we know our children are.

We stand with our troops.  When one of them takes a hit we gather around them.  We offer encouragement, resources, and most of all we pour our hearts and strength  into them so they can stand once again.  We are there for each other.

Happy New Year my troops and my friends.  You have helped me make it through many battles this year and without you I may have been taken prisoner by the enemy of despair.  We have fought long and hard together and I am proud to stand and serve by you all.  May your days be full of hope and victories and your losses be few.  Know that I am there ready and willing and able to battle with you.


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Amy Fields is a mother of two special needs children.  You can follow her journey on her blog, Many Kinds of Families

“I Need a Break!” – Respite & Other Stress Relievers for Family Caregivers

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Recent research indicates that family caregivers of children with special needs actually have accelerated aging down to the cell level, up to a 10 years difference from other parents.  This is made even more difficult by the fact that children are with disabilities are more likely to be raised by single parents than children without disabilities.  However, there are things that parents can do to preserve their physical, and mental, health.

 

Talking with other Parents

Sometimes speaking with other parents who have “been there” is all that is needed.  The latest study indicates that peer support helps reverse the lengthening of “telomeres” (aging.)  There are support groups as well as “matching” with a trained volunteer parent of a child with the same condition through Parent-to-Parent.  The American Self-Help Clearinghouse lists support groups nationally, including one-to-one telephone assistance (see Resources.)

 

 

 

 

 

 

 Photo www.centrolasamericas.org

 

 Exercise, Quiet Time, etc.

Parents need to take care of themselves so they can take care of their child.  Sometimes families may be able to involve their child, which is always best if possible, such as going on walks or doing yoga together.  Even if your child doesn’t participate, there may be a way for a parent to try to do healthy things while supervising their child.  For example, sometimes my daughter will play on a videogame while I do exercise videos in the same room.  There’s such a variety such as aerobics, “stepping”, and even walking videos that can be done indoors if the weather is bad.  Or a parent can use a treadmill, exercise bike, or even a simple “pedaler” while their child looks at a book, or watches TV or a video. 

 

Parents may just need some downtime, rather than “doing something.”  Sometimes families can read, do puzzles, etc. alone or together while their child is engaged in another independent activity.  Or sometimes reading to the child, or just being in the same room reading together, is calming.  Music or meditation can also be helpful.  Even if having a “quiet corner” that the parent uses to regroup with candles, aromatherapy, etc., could give the parent the relaxation that s/he needs.  If both parents are present, one parent can watch the child while the other takes a mini-break, even if it’s just for 5 minutes.

 

Respite

Ultimately, parents of children with disabilities may just need to get away for a bit.  Parents have to feel comfortable with the person who will be with their child, so it may be a gradual process.  Families may want to stay home the first time, then increase the time away.  Even a few hours a month is beneficial.  In some states, children with developmental disabilities or other conditions, receive respite services.  The source of respite will differ from state to state.  Many times, the Title V (Maternal/Child Health) Program can give families leads on how to find care.  Family Voices/Family-to-Family Health Information Centers and Parent-to-Parent programs can also give parents helpful resources.  There is also a national respite locator for families (see Resources.) 

There are many ways that parents can de-stress, for either a short time period or hours.  Parents of children with special needs can talk to other families, take care of their physical/mental health, or just get away for a bit and come back refreshed.

Resources

Support groups - American Self-Help Clearinghouse

http://search.selfhelpgroups.org/selfhelp/

 

 

 

 

 

 

 

Parent-to-Parent

http://www.p2pusa.org/p2pusa/SitePages/p2p-support.aspx

 

 

 

 
 

Mental Health help

http://www.nami.org/Template.cfm?Section=Your_Local_NAMI&Template=/CustomSource/AffiliateFinder.cfm

 

 

 

ARCH national respite locator

http://archrespite.org/respitelocator

 

 

 

Helpful Contacts:

 

Title V (Maternal/Child Health)

http://www.amchp.org/Policy-Advocacy/MCHAdvocacy/Pages/StateProfiles.aspx 

 

 

 

 

 

Family Voices/Family-to-Family Health Information Centers

FV http://www.familyvoices.org/states

F2FHIC http://www.familyvoices.org/page?id=0052

 

 

 

 

 

 

Remain Hopeful,

Lauren  

 

Lauren Agoratus is a parent/advocate who works for the Statewide Parent Advocacy Network and serves as the NJ Coordinator for Family Voices (www.spanadvocacy.org), a national network that works to “keep families at the center of children’s healthcare” at www.familyvoices.org or FB www.facebook.com/pages/Family-Voices-Inc-National/137783182902269.  She also serves as NJ representative supporting caregivers across the lifespan for the Caregiver Action Network (formerly National Family Caregivers Association) in a volunteer capacity at http://caregiveraction.org/ or FB www.facebook.com/CaregiverActionNetwork.