Janea

Meet Janea. She blogs here about raising twins, one of whom has CP. To see her son Kader using a very cool walker, check out this post. I’m happy to have Janea here today to share her thoughts on community.

I felt a mixture of emotions when I received Heather’s invitation to guest post about “building community” on her blog.  However, the invitation is a way of building community and it is hard to say no to that.

I am naturally painfully shy.  My personality and hang ups have always lead me away from being a part of a larger community or kept me on the fringes.  Now that I have *ahem* matured and found myself a parent, the idea of having community is imperative and has been occupying a lot of mental space.

The beginning of parenthood for me was one scary isolating time bleeding into another.  First I gave birth at 29 weeks to twins who spent 67 days in a NICU in France (I don’t speak French) followed by a two year period of sequestration in my small Brooklyn apartment with two babies who needed above and beyond care.  My son was diagnosed with athetoid, quadriplegic cerebral palsy.  After we started early intervention services, my son’s therapists were my only link to the outside world.  They became my mini-community by default when every second was dedicated to the survival of my children (instead of frivolities like, say, showering) and they kept showing up at my house every day to help. Some long time friends faded away and I was seriously depressed.

Having a child with special needs can be severely isolating, which is the opposite of what you and your child require.  What you do need are information, compassion, resources and an occasional friendly empathetic listen that only someone with similar experiences can give.  You need community.  I have learned this from the experience of Kader and Veronika coming into my life and I have met some truly awesome people. My gratitude for the camaraderie and friendships I have made runs deep.

Although, it has occurred to me that the entire system is designed, perhaps not on purpose, to divide and conquer.  Does vying with your peers for one of only six appropriate school placements foster a sense of community?  Does having all your time sucked away to deal with the bureaucracy and red tape madness leave room for building community?  Does going out of your mind from all the worry, stress and sleeplessness that comes with the special needs parent way of life attract community? Maybe not the kind you want!

It is important that I, as the parent, find my community (and retain my sanity) since I am keeping the boat afloat, however, even more crucial is what does community mean to my son, the captain?  Kader is nonverbal with very poor communication skills and it is hard to know what is really going on inside his head.  He has not been so exposed to other children with CP or who cannot walk. His first year at preschool he was the only non-ambulatory child. It is clear that he keenly feels his differentness.  Historically he hasn’t connected so much with other children, except sometimes his sister.  They don’t have the patience with his lack of response and he hasn’t seemed to care.  Not the same when he encounters an older boy once a week at therapy that has serious athetoid CP but can still ambulate.  Kader tries to get his eye and smiles broadly at him.  One time at a different therapy center, a 17-year old boy, trying out a new pair of AFO’s, was passing back and forth across the room. Kader shouted “Bravo!! Bravo!!” congratulating him on his awesome use of his walker.

What does Kader need in a community?  I think he needs it all; typically developing kids so he can see potentials and reap the benefits of inclusion but also kids that struggle with the same issues to provide a different kind of inspiration and feeling of normalcy.  He needs to contribute and have a strong sense of his own value, to find his “voice” even if he is not able to verbalize.  In community, he will grow wings and fly.   Hell, let’s all fly together!

Shared at Joy in the Journey

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8 thoughts on “Janea

  1. I love that Kader connects with his peers who struggle. This is so great for me to hear as someone who beats the inclusion drum – there is value elsewhere as well. Thanks for the reminder Janea.

  2. Pingback: Building Community: Team Aidan | KaderCareCoalition

  3. I thought this was a really thought-provoking post. Not sure why. None of the info was new to me exactly. Maybe I just loved that someone else out there knows how much hell the first two years of preemie twins, one with athetoid CP, is!

  4. I can relate to this so much. Our first child had a similar start, except she spent weeks in the hospital with congenital heart defects. My social support system was very much the medical professionals and therapists we worked with, until I began to meet other families with similar children. I love how connected your son is to other kids like him — that is such a great picture. Thank you for sharing a glimpse into this kind of life. It’s so important.

  5. Pingback: The Common Need | Team Aidan

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