Tuesday, August 18, 2015

Overnight Summer Camp: Pick Up

Yes, I was a bit of a mess while Josh was gone at overnight camp;  not a full blown "can't deal with my life for a while, send out a mass email to all of my friends, stop meeting the needs of the rest of my kids" mess but a more subtle, internal mess.  My thoughts kept wandering toward dark scenarios of Josh getting lost in the woods or crying all night.  I kept having that jolting feeling of realizing that I've left my cell phone somewhere but then I would realize that it wasn't my phone, it was my first born, my thirteen year old baby who NEEDS ME DARN IT!

But surely, they would call me if he was having a really hard time... and they did not call.  So I tried to enjoy my weekend.  I went to my daughters' musical performance that came at the end of their summer day camp.  I helped them run a lemonade stand in our driveway. I took them out to a movie.   Admittedly, all of these things were much easier without also managing Josh.  I tried really hard to let it be a true respite weekend.  On Sunday morning at church, I had someone pray with me so I could let go of my worries and be more of a mom that trusts my son into God's hands.

Finally, after lunch after church, the girls and I drove back up the hills to the respite camp.  I race-walked to the check out station and signed all of the forms.  It seemed to take forever for Josh and his counselor to come out and when they did, my beloved boy had a silly hat on his head and a smile on his face.  "Hi Mama" he said, without prompting.

I asked his buddy how he did and this is what she said, "Honestly, in my three summers of being a counselor at this camp,  Josh was the easiest, most happy camper by far."  She told me that he had not once cried out or gotten upset.

She handed me their schedule/ list of activities and it turns out that Josh gladly participated in the following:

- Rode a horse
- Swam at a pool party with games (where he won the prize for "Best Underwater Dancer")
- Attended a dance after dinner
- Participated in a squirt gun fight
- Made a hand puppet
- Watched a talent show
- Ate a lot at an ice cream party
- Made sand art
- Packed up his own bag
- Enjoyed a slide show of the camp and picked up his camp award.

My relief was like a fresh wind on a scorching day.  What is this new world that we are in?  What is this new reality where I could possibly have a few days off and my son is having fun??!!

As I drove down the hill with my beloved son, who is no longer my baby, I realized that I had a little bit of sadness mix in with my joy.  He does not always need me in the same way as he has.  For all of my talk and goal setting about independence skills, honestly, that's not as easy for me as I thought. I'm used to being the one who keeps this boy alive day in and day out.  I am learning that letting him grow up means getting a chiropractic adjustment on my sense of my own identity as a special needs mom.   It's a little painful but I'm glad and willing.

Monday, August 17, 2015

Overnight Summer Camp: Drop Off

She drove an expensive looking SUV and had an accessorizing small dog.  Her shoes, hair and nails looked like they would be appropriate in a big law firm or a clothing boutique where one makes appointments to be assisted in shopping.  Everything about her said "put together" except for the expression on her face.  Her mouth and her eyes exuded the same apprehension that I felt.  She seemed stressed and distracted as she helped her daughter out of the car, which was right next to ours. The girl, blond, well groomed and about Josh's age, had Downs Syndrome.  She seemed unsure as well. They must have been first timers.

I wondered if this girl's mom was also doubting herself for signing her child up to be dropped off at this overnight respite camp for the weekend.  Did it feel wrong to her to leave her daughter who had so many needs in the hands of people who seemed to run a good program but didn't know or love her child?  Was she tempted to drive back home and protect her beloved child with the safety of known routines?

I happened to have a dog with me as well so we chatted briefly about our dogs.  We did not talk about our children.

Had we been in a different context, we probably could have talked for hours about the complexities of raising children with special needs.  We might have given each other advice about how to forge our own path when our kids are not neuro-typical.   Maybe we would have compared notes on the zillions of programs, doctors, and therapies that we've tried.

But we were not there to be friends or compatriots, we were both there to drop off our kids at overnight summer camp.  I have been taking Josh to the Saturday day program at this camp for kids with special needs every couple of months for the past year.  Josh has done well but he has never gone anywhere overnight without either Alex or me.  An overnight is a completely different thing because it involves meds and, well, sleep.  Establishing good sleep has been a long, Tolkienian journey for us.  Also, Josh is not at a place, cognitively, to understand that I would be dropping him off on Friday morning and then picking him back up on Sunday afternoon.  What if he thought that I was just leaving him there?  He has no way of asking questions like, "Where is my mom and why are we doing this thing that is so out of our routine?"

And the med thing is complicated too.  If Josh does not get one of his meds, he will eventually dehydrate and pass out and, possibly, die.  Also, if he doesn't get his artificial cortef, the "fight or flight" hormone, he could fall into seizures or, even death.

Even with these dark scenarios, I couldn't help but to smile a bit when I reached the front of the line at the nurse's check in station.  Some of the kids who had already been checked in had come with multiple bags of medications that made our stash look minuscule in comparison.  The keen and appropriate questions that the nurse asked me assured me that they knew what they were doing. Everything was neatly documented and double checked.

Josh's one-on-one buddy for the day, Andrea, was chatty, energetic and confident, like a compassionate chipmunk.  She walked us to his cabin and reminded me that there would be two staff on duty in the 20 kid cabin all through the night just in case there was a need.

Josh seemed serene and mature.  After we went over all of items in Josh's overnight bag and double checked details about his personal routines, Andrea asked Josh if he was ready to go horseback riding.  After doing a little hand flapping, Josh stood up and said, "Yes".  My heart both rose and broke a little as I drove down the hill from the camp.  Oh, man.  I hope I'm not a mess this weekend.

Thursday, August 6, 2015

Preparing for Summer Camp

One of my goals for this past year has been to get Josh ready to go on a three day overnight camp at a respite center in the mountains about a half an hour from our house.  My baby just turned thirteen this week and I know that he needs to stretch his wings and experience more of life independent from us and from the emotional safety and auditory comfort of just listening to music in his bedroom.

Every other month, this past year, Josh has gone to a day long camp on a Saturday at this camp which has been especially designed for youth and adults with special needs.  He's done well spending the day doing various campy activities like swimming, hiking, and attending an evening dance all with his one-on-one buddy.  Last winter, the camp trucked in a huge pile of snow and Josh enjoyed slipping around on it on a sled.  Another time they went to a baseball game together.  Each time Josh has seemed to enjoy it.  I am encouraged by the fact that when we drive up to the camp, he seems relatively willing to get out of the car and engage in the activities of the day.

In less than two weeks Josh will go for his three-day stint.  Even though we've been building up to this all year, I feel really nervous.  How will he do at night?  Will the nurse keep track of his medications?  How will toileting go?  What if he hates it and feels like we've abandoned him?

So much of parenting is about making sure that things go well, being prepared, protecting our children.  This feels especially true for a child who is visually impaired, has limited verbal communication skills and has to take daily medications in order to live.

Yet, my life experience and my faith tells me that if you don't take risks, you don't grow and you don't really live.  And I know that taking (hopefully, wise) risks is a huge part of the teenage years.

So I'm nervously looking forward to what this adventure might bring.  I'll let you know how it goes.