Building Natural Supports

April 29, 2013

Raising kids can be stressful.  One of the reasons that raising special needs kids can sometimes seem more stressful is because you feel the resources that parents of typically developing kids can draw upon are not sufficient for your child.  An example of this might be the 14 year-old girl down the block who has taken a baby sitting class and offers her services.  The parents of a verbal, traditionally developing child might not bat an eye at the offer.  They may know her to be responsible and caring.  It's not a bad decision for them.  But the parents of a special needs child may feel she's not ready to care for their child.  They may worry about what would happen in case of a melt down, they may worry the sitter won't hand the frustrated bites and slaps the way they might.  That resource seems unavailable to them. The popular advice offered to stressed out parents is, "make time for yourself", but that advice isn't practical when the resources available to other parents just aren't enough for your child.  Sometimes even if you're comfortable leaving your child with someone, that person may not share your comfort and be nervous or worried about screwing something up. One way to increase the likelihood of getting that extra time is by broadening the experience level of your resources, by growing your natural supports. Okay, so what are natural supports?  They're friends, family, neighbors, and coworkers.  They are the same people and supports being used by parents of typically developing kids, they just require a little I typically do a lousy job of building natural supports, so this is more of a do as I say, not as I do, sort of post.  I'll explain. Share your story:  I've always been very tight-lipped about my stress.  I've always had a difficult time asking for help.  These things are related, and interfere with my ability to build my own natural supports.  How do friends and family know you need help, if you never explain your situation? One of the best ways I've found to communicate my stresses and anxieties, my heartaches and my joys has been through blogging.  By writing to "nobody", but exposing that writing to everybody, it provides almost a filter.  From behind the monitor I don't have to look people in the eye, or see their response or wonder about facial expression.  I can put those things aside and just "share" as if I'm talking to myself.  Things that I feel uncomfortable sharing face to face I feel much more comfortable sharing via blog.  This sharing has allowed the friends and family who read the blog to better understand our lives and to better understand our daughters' needs. But you don't have to have a blog to share your story.  Share with friends.  Call family and let them know about the latest IEP.  They'll never hear it unless they hear it from you. Fundraise:  Nobody likes to ask for money, but everybody loves to rally around a cause.  There's no greater cause than your child.  If your office allows, posting a notice on your door that you're walking to benefit an autism charity is a great way to find people in your office who are also active and supportive.  It will generate questions about the charity and you can share your story with them. My boss is very supportive of my need to spend time with my family.  A big part of that is because he knows Lily's story.  He's more forgiving of my need to leave work early certain days in order to attend a therapy or appointment because he's gotten to know Lily through me.  You can expand that support within your office by doing nothing more than posting a "Sponsor" form on an office door and exchanging stories with a curious coworker. Schedule visits:  I drag my feet when we arrange to visit friends and family with Lily.  I'm out of my element.  Lily is out of her element.  I worry that their belongings are at risk.  I don't want to impose.  Additional planning is required, food and spare clothes have to get packed.  It's not "convenient". But the more visits you schedule then the better your friends and family understand what to expect.  The more your son/daughter becomes comfortable with this new venue.  As the visits become more common, accommodations start springing up...maybe grandparents start stocking favorite snacks, buy an extra potty seat, move the crystal to the top shelf, your child becomes more comfortable in this new place, and your family/friends become more understanding and more comfortable with your child's place in this place. Meet Other Parents at School:  It should be easier to meet other parents who have special needs children in your son/daughter's class, but special needs parents often seem to keep mostly to themselves.  We're not an unfriendly group, we just don't necessarily talk about soccer practice or last week's PTA meeting with the same relish other parents might. When I've approached other parents of the special needs kids that Lily attends class with they've almost always been very friendly...and they get it!  I add them on Facebook, they read the blog, we chat about IEP meetings or school gossip.  They know Lily and they understand her.  Play dates to follow...(or "hangouts" as my older daughter calls them now). Invite Friends Over:  Sometimes we don't think about simply extending an invitation to our friends and family.  It's not that we don't miss them or want to see them it's just that "free time" is such a precious commodity we spend it cleaning or scheduling or visiting the doctor, and having people over requires some work in and of itself.  Perhaps we're just not that comfortable with the "state" of the house. Whatever the reason, you don't need to schedule a sitter when you have someone over to your house.  Your child is comfortable and at home.  He/she has all her toys or special quiet rooms, DVDs or music.  It's the perfect environment to introduce someone to your child, because your child will never be more comfortable than at home. Meet the Neighbors:  Sometimes it's easy to just parent on autopilot.  Lily likes to watch TV.  We like not getting screamed at.  Let's just let her watch TV 24/7!  Lily doesn't like going outside and playing (or is at the very least reluctant to go outside.  Once outside she's typically reluctant to go back in).  Why fight? Getting Lily outside where she can see/meet the neighbors and their kids gives us a chance to chat with other neighborhood parents without any sort of special arranging or scheduling or packing.  Lily plays, their kids play...and we communicate with people who live around us.  It's another way to share our story, by gossiping with neighbors.  They become more aware of who Lily is, and how she operates. There are too many things we all need to develop "awareness" about.  I've lost track of the significance of the colors of all the various magnetic ribbons stuck to the backs of all the cars I see.  Everyone is deal with something, and unless someone you know and/or love is in the thick of it, they colors just fade together and become meaningless. The best way to build awareness for my daughter is to share her with my friends and family; let them learn who she is and fall in love with her the way we have.  And the best way to do that is to build up her natural supports.  I've always felt that the best way to make people give my daughter a fair chance is to teach them to care about her.  If they meet her, and learn about her, and enjoy her quirks, then they'll stand up for her, they'll care about her and they'll care for her.  And the more supports you build, the better chance you have to "take time for yourself".  

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