Wednesday, July 31

Companionship: The Missing Piece of the Puzzle for Special Needs Parents

I tend to run in different "circles of friends" than most people that I know in my own town.  I don't attend playgroups, don't go to the homeschooling co-ops, don't participate in the Women's Bible Studies, and don't hang out with the PTA at the elementary school.  I could give reasons about why I don't take part in each of those, but really it would all boil back down to one thing: We have a unique family make-up and our chosen path because of that uniqueness means that these things are not options for us right now.

I could make a much longer list of the things that we don't do because of the path of life we're on.  In fact, I could regularly add something to it that we "used to do" that we will no longer do because of one reason or another.  I don't believe there is a magic button that turns us from social creatures in to isolated people and makes our desires for interaction with people outside of our children and spouse to suddenly turn off.

Instead, I think that the more isolated our lives bring us, the more we need to reach out for connections with people that can understand our journey.  

When it feels like we're "doing life alone" is when we most need a shoulder to lean on, an ear to listen, and a friend to help pick us back up on our feet.  I often struggle with that balance and find that during the most difficult seasons, I not only am walking through fire, but I find myself afraid to reach out to others.  I fear several things.  
  1. Burdening them with the weight of my trouble.
  2. Rejection, and having them turn me away, worsening the feeling of my troubles.
  3. Feeling that I've given them a view of our situation that is all negative, which is not my intention.
When things look pretty bleak, when we feel like we're alone, when we're mourning the things we "can't" do as a family or as an individual, we can't just internalize and move on.  No, we need to do some things to keep OURSELVES healthy.

The first thing I often look is for a compassionate friend that can get it.  Find someone that can share your burdens, understand your struggles, and relate to you because they have been in your shoes.  Ok, I hear you "easier said than done!"  "No one really can understand what I'm going through."  "I don't know anyone like that."  That's when I say look harder.  

I am amazed at the people that God has brought in to my life through online relationships. Most of us with unique family situations don't have connections with people in our own communities that can relate to what we're going through with our family.  I don't know any other families in our town that have a house full of children ages 10 and under that have significant disabilities and some with past trauma.  The blessing is-- I don't have to.

Don't get me wrong, I would love to have someone local that could really relate to us!  Right now, that's not how God has provided that companionship for us, though.

In fact, most of the families that I am involved with who have multiple adopted children with special needs feel some degree of isolation from other families in their communities.  

It is amazing what today's technology can provide to families with unique situations.  Whether a family has 1 or 25 children, whether some or all or none of them are adopted, and no matter how many of them have any amount or variant of special needs, the community of adoptive parents and special needs parents online is a resource like none other.  I have been involved with families experiencing all of the following through FaceBook parent connections:

  • Families find companionship through similar unique family make-ups
  • Parents experience life with other families at conferences, during vacations or spending holidays together
  • Moms locate other moms whose children have the same unique diagnosis as their child
  • People share profiles of waiting children with hundreds of families that may be open to raising the child- and kids find families
  • Parents relate with others when they feel their troubles are overwhelming and finding they aren't alone
  • Moms and dads realize there are people who will reach out to their family in a time of crisis to provide a listening ear, assistance through shared experiences, and even respite for the family in need
  • I have seen children whose adoptions need to be disrupted (child goes to a second adoptive family) and the "first family" connects with the new adoptive family and plays a special role in the child's life even as they are unable to meet the child's physical and emotional/social needs
  • Foster parents who have a special bond with a child that are able to keep in contact and receive updates on the child and their new family
I am a part of many groups on FaceBook, and each serves a different 'role'.
  • Christian Mom's Groups
  • Diagnosis specific groups (feeding tubes, Down syndrome, CP)
  • General special needs parenting groups
  • Special needs adoption groups
  • Multiple adopted special needs kids groups
I want to encourage you... that if you are not already connected with other people that can share your burdens, understand your struggles, and relate to you because they have been in your shoes, then keep looking. 

Dig a little more. I don't believe there is a magic button that turns us from social creatures in to isolated people and makes our desires for interaction with people outside of our family to suddenly turn off.  Instead, I think that the more isolated our lives bring us, the more we need to reach out for connections with people that can understand our journey.  




3 comments:

  1. I'm not on FB although I do follow a lot of special needs blogs (as well as adoption blogs). My current "best friends" IRL have come by meeting in the therapy waiting room at our children's hospital! :) I have found other special needs parents there who also homeschool and who get the craziness of our lives.

    ReplyDelete
  2. Any time you, or anyone needs to vent, please feel free to contact me and let it all out. I may not have every experience that you have, but I have my share and since I was a nurse, I have a good understanding of medical issues. I also can "take it to the grave", lol. Feeling blessed that we can reach out to others thru technology and that we can get support and be support. Be blessed. junebuga@hotmail.com

    ReplyDelete
  3. I may not get all of your experiences, but I get a great deal. If anyone needs to vent, feel free, I won't judge or blab. junebuga@hotmail.com

    ReplyDelete