Friday, July 1, 2016

How caregivers can maintain social connections for their family amidst chaos




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My daughter has five life-threatening conditions and autism just to keep things interesting.  I always joke about what passes for normal around here.  But it is possible for parents to maintain community connections for both their family and child with their “new normal.” 

Support/Belonging for Parents 

Family caregivers of children with special needs may feel isolated at times.  Sometimes it just helps to talk to someone who’s “been there.”  Support groups are a great source of information and emotional strength for families (see Resources.)  There is also the option to get an individual match with a trained volunteer parent of a child with the same condition through Parent-to-Parent.  Some families may find support through their faith.  It is also helpful if the children’s faith services personnel are familiar and supportive of the child’s disability.  Lastly, respite is essential for family caregivers to get out on their own or with friends.

Photo http://apolloniafoundation.org

Connections for Kids 

Some disability groups have support groups for children, siblings, or community experiences.  In my town, the National Alliance on Mental Illness has NAMI Kids where the children go on outings to parks, museums, gardens or do arts & crafts.  If a child has a meltdown, the family is surrounded by others who “get it” and won’t judge.  Many disability organizations have social skills groups for kids or special needs exercise like yoga.  There are also more inclusive opportunities like Best Buddies or the Council for Exceptional Children using peer mentors. Recreational activities like Special Olympics have both individual as well as inclusive opportunities.  Others include Miracle League or Challenger Little League that use peer buddies.  One unusual thing we found is a beauty salon (Adorn in NJ http://www.adornbeautycenterspa.com/ and http://www.thairapyhairsalon.com/
in CA are the only 2 so far) that uses therapy dogs so the kids can get haircuts or nails done.  Sometimes a one-to-one helper, or even a service dog, makes all the difference for children to be
able to participate successfully.  For kids of transition age (16 and up), the Centers for Independent Living also have social activities.

Photo http://www.sone.org/
Where to Find Other Social Opportunities

 Social media is a good place to make connections and find out about events.  Sometimes disability-focused organizations have listings of special needs events (in NJ it is www.thetrainingcaldendar.org) There’s a great listing of children’s activities based on where they live that could also work for special kids by Macaroni Kid.

 
Family caregivers need to maintain both their own relationships as well as those of their child.  By doing this, they will be more included in the community and not feel so all alone.

  
Resources:
 
ARCH respite locator
 


 
Best Buddies
 
 


Centers for Independent Living



 Council for Exceptional Children
https://www.cec.sped.org/~/media/Files/Membership/Active%20CEC%20Chapters%20as%20of%209814.pdf

 


 Little League - Challenger Division
http://www.littleleague.org/learn/about/divisions/challenger.htm




Macaroni Kid - activities for all children



Miracle League
http://www.themiracleleague.net/find-a-miracle-league/



National Alliance on Mental Illness
 




Parent-to-Parent
 
 
 
 
Special Olympics






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.
 















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  6. My names are Ashley Vivian, Am here to share a testimony on how Dr Raypower helped me. After 1/5 year relationship with my boyfriend, he changed suddenly and stopped contacting me regularly, he would come up with excuses of not seeing me all the time. He stopped answering my calls and my sms and he stopped seeing me regularly. I then started catching him with different girls several times but every time he would say that he love me and that he needed some time to think about our relationship. But cannot stop thinking about him so i decided to go online and i saw so many good talk about this spell caster called Dr Raypower and i contact him and explain my problems to him. He cast a love spell for me which i use and after 24 hours, my boyfriend came back to me and started contacting me regularly and we moved in together after a few months and he was more open to me than before and he started spending more time with me than his friends. We eventually got married and we now have been married happily for 3 years with a son. Ever since Dr Raypower helped me, my partner is very stable, faithful and closer to me than before.You can also contact this spell caster and get your relationship fix Email: urgentspellcast@gmail.com

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