Sunday, October 13, 2013

other kids with special needs

Last month, Chris and I had the opportunity to "take a break" and let the boys spend an evening at the Saturday Night Alive respite program at our church (FUMC Rockwall). It was great to know there were folks volunteering to take care of children with special needs and provide a fun time for them and their siblings so the parents could have a little time off. But even better than taking a break, this past Friday night I had the privilege of being one of those volunteers. 

Friday night, I spent three hours with five very special tweens and teens with special needs. I've been wanting to volunteer for quite a while, mostly for my own selfish reasons.  As I've said before, I often forget Leo has a disability.  Since he's a baby, or actually a toddler now, I don't think we don't get the full picture of what to expect in his future yet. I've been curious to know what it is like to spend time with older children or teens with special needs?  

I was a little surprised by what I learned. About the kids, and about myself.

It hurts the heart when children with special needs cannot communicate their needs to you.  
There was one child in particular who could not communicate his needs. He was very happy when he arrived, but after spending some time around noisy toys and seeing it begin to rain outside, he became very sad. Sad to the point of tears and it broke my heart. We spent lots of time consoling him, and I had the chance to take him for a walk. Once we were in a quieter hallway outside the classroom he was much calmer. Was there too much stimulation?  Was he afraid of the rain, that he could see outside the window? I couldn't help but wonder exactly what he felt not being able to directly communicate his needs? It really hurt my heart.  He finished the evening in a smaller, quieter classroom downstairs and all ended well.

There is immense joy from seeing a child with special needs accomplish something. 
Even though this was my first night to volunteer, there were other volunteers who have spent time with these same children through both the respite program and through the community as well.  One of the volunteers I was working with is a teacher at Head Start in Rockwall ISD. She joyfully shared stories with me of how far some of these kids have come along over the years - physically, verbally, and from a maturity standpoint. Stories from a child who was wheelchair bound all his life transitioned to orthotics and walking on his own, to another who went from totally non-verbal to communicating in phrases. Hearing her stories made me wish I had been a part sooner and witnessed the accomplishments!  Which brings me to the next thing I learned...

The teachers and support staff who work with children who have special needs do it because they love what they do, and they love the children.  
As I already mentioned, I was paired with a teacher from the Head Start program. I also met another volunteer who works at the High School teaching teenagers with special needs, as well as another staff member from one of the local Elementary Schools who does the same.  Why on earth would individuals who work such a challenging and exhausting job all week long want to volunteer at yet another program doing the same challenging and exhausting work? For Free? It's simple. They love what they do, and they love these kids. It really makes me happy and at ease to know I have teachers like this in our district to look forward to working with Leo!

My least favorite thing that I learned... Spending time with older children who have special needs made me more aware of their vulnerability.
I have wanted to believe that Leo will grow up in the same world that Meris and Seth will grow up in. After all, we will give him all of the same opportunities as our other children.  We will have the same expectations of him. But Friday night really brought to my attention the one difference Leo will have going against him - he will be more vulnerable to the world. If he is not surrounded by those who look out for his best interest, if he is not watched over by those who completely love him, he could very easily be taken advantage of. Materially, financially, or worst of all physically.  This scares me to death.  This is an area where I have to pray to God a lot, and trust that He will protect Leo any moment that I am not there to do so. It's because of this realization that I say I was "privileged" to work with these special kids.  Their parents, with the same fears I have, entrusted the safety and well being of their precious children to me. That is a privilege!

I learned that I loved working with these children. 
They each taught me more than I expected, and I loved spending time with them more than I ever thought I would.  

At the end of the night Friday, I was pretty tired.  I looked forward to crawling into bed a little early, expecting Leo to crash since he was up past his bedtime. That didn't happen. Instead, Leo's teeth that are trying to pop through had no mercy. The teething erupted with a vengeance, leaving him screaming inconsolably for nearly two hours. I went from really tired to super exhausted!  At first I thought - why now?  I just gave three hours of my life to help other families take a break... and this is my payback?  Then it dawned on me that this is the life. Now I know "teething" has nothing to do with special needs... but seriously, the moment made me realize in the life as a parent of a child with special needs, there is never a break. 

So with that thought, I highly encourage you to consider volunteering with a respite program.  There is such a need for this in all communities and they cannot continue to run without volunteers.  Being a parent to a child (or in many cases children) with special needs is a very, very hard job.  Parents need to know they have a break coming.  A moment to take a deep breath and be relieved of their responsibilities. Time to reconnect with their spouse, or just time to relax. In the case of one family, time to go to the grocery store!  Spending time with these children is eye-opening, yet so rewarding. 

You won't regret it.

With love,

Joyce & Leo

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