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Tuesday, June 19, 2012

Sibling Respite - Even Caroline Needs a Break!

Respite is a popular term in the special needs community. To quote Jill's House, the premiere respite center on the east coast, the term means the provision of "a safe haven to which parents can entrust their children, allowing the parents a time of rest."  I would add that siblings require respite just as much as parents do, and often times more, if they are a heavily relied upon resource or care giver to their special needs brother or sister.  


That is why, even though it broke our hearts, we sent our 10 yr old daughter, Caroline to an 8 day sleep over camp called Summer's Best 2 Weeks. She is an integral part of our family and not having her here has been hard.  We find ourselves a little lonely and bored.  Even Jackson has been out of sorts all week, and while not able to communicate exactly what he is feeling, his behavior is speaking loud and clear that something is amiss.  


Caroline puts a tremendous amount of pressure on herself to be a good sister.  She still cries when recalling the time she pushed J off the bed when she was 2 yrs old and broke his arm. She is his biggest advocate and number one fan.  She has spent the first 10 yrs of her life sticking up for him on the playground, calling out bully after bully, standing up to them in front of the whole school, only to reveal how powerless they are to true bravery...to that of a sister.  


As a result of 10 years of constant confrontation with people who have shunned Jackson or given him a judgmental glance, she has developed a bit of a chip on her shoulder.  She lives as if she constantly has something to prove.  And while this attitude has served her well on the basketball court, it has exhausted her emotionally as well.  She seeks to protect and care for not just Jackson, but me as well, as she knows how upset I get when people discriminate against him and all special needs individuals...which happens more often than our society cares to admit.  


And while she has been involved with a few sibling support groups, those do not provide her with what true respite should, A BREAK!  She does not want to talk about her feeling and the pressures of having an autistic brother, she wants to escape and play so hard that she crashes on her bed without thinking about Jackson all day! She needs a solid week to be Caroline and not a sister.  She needs time to explore her interests and beliefs outside how they effect Jackson and our family dynamic.  If she wants to sing at the top of her lungs, she does not have to worry about him shushing her.  If she wants to play soccer in the dark with fireflies, she does not have to worry about waking him up because he goes to bed so early.  


Respite is essential for parents with special needs children.  It must also be considered essential for siblings.  I know a lot of families who have children with all sorts of disabilities and in each one is an incredible brother or sister who selflessly helps to raise and care for these children.  Many of the most remarkable adults I know grew up with special needs siblings.  There is no circumstance so profound in a developing child's life than that of caregiver to a differently-abled loved one, but there is also none so taxing.  I hope and pray that we can continue to provide Caroline with more true respite opportunities as she grows up so that she is able to maintain that fierce attitude of protection and love that she has for Jackson.  



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