Thrive Camp

Here in Maryland, summer traditionally means camp for kids.  Most of Zack’s friends attend day camps of some sort.  Zack has never attended anything more than a part day VBS and then only at our church where people are very aware of his needs and I am close by.  I am not aware of many camps (other than ostomy camp) where there is staff to help someone empty their ostomy bag, give medication, and to help change wafers.  Add in his learning disabilities and camp seems pretty out of reach.  I have been waiting for the day when Zack asks if he can go, but thankfully that day has not yet arrived.

Sometimes life gives you gifts you did not even know you needed.  A few weeks ago, we were delighted and excited to receive an email inviting Zack to a special camp at our new church called Thrive Camp.  Our church has a pretty amazing ministry for middle school, high school and young adults with special needs.  The younger kids are always welcome, but there is not a specific program just for them. Thrive Camp was developed just for this age group and included siblings as well.

Words can never convey just how wonderful this week was.  I was able to meet other moms like me.  I have lots of friends and almost all of them love my boy.  But only a very few understand life with a child with special needs.  I get that and do not expect others to be able to grasp our life.  However, making new friends who understand our challenges was like receiving a special gift.  I thought the camp was just what Zack needed.  Turns out, I needed it too!

The organizers of the camp thought of every little detail. Every dietary need was considered.  Every medical need was addressed and there was a nurse available at all times.  You know that made my day.  Not many people really want to deal with intestines…

Camp was run a bit like VBS in the morning with a fun field trip in the afternoon.  On the first day, the kids went to Meadow Creek Farm and Calm Acres.  This farm is run by a lady with the biggest heart for people of all ages with disabilities.  The kids had a picnic and hiked on a trail full of hidden wind chimes and swings.  The highlight of the afternoon, however, was being able to paint on actual horses.  In a million years I would never have thought to do that!  I am so glad that God made so many creative and compassionate people!  Check out these pictures.

Zack admiring the horse he helped to paint.

Come on!  How cool is that?

The next day, the kids went bowling in the afternoon.  Maybe it was all of those winters spent in cold climates like Montana and North Dakota that started our fascination with the sport, but all of my kids love to bowl.  Zack had so much fun and could not wait to tell me how he did not have to wear those uncomfortable bowling shoes, that he was able to use the ten pound ball and, most importantly, he was able to have pizza and a fountain drink of lemonade.  What more could a child ask for?

Friday saw the group headed to Spring Meadow Farm where they learned how soft serve ice-cream and Sno Balls were made.  In addition, there was a scavenger hunt, a petting zoo and the farmer let them plant their very own sunflowers.  Zack cannot have ice-cream because it makes his belly hurt like crazy.  While all of the other kids got to have ice-cream, the staff let Zack make his own Sno Ball with all of the orange syrup his heart desired.  I think he will be talking about using the machine to crush the ice for a long time!

On Saturday, a sweet family invited all of the campers and their families over for a BBQ and swimming.  It was a fun afternoon and Jim was able to connect with some of the dads.  That made me happy.

The hardest and best part of the week for me was watching Zack.  He was happy (best).  He was free to be exactly how God made him without his mama telling him to sit still, to look people in the eye when talking, or to change this behavior or to a more appropriate one (best).  Not being neurotypical, learning all the social cues in life is pretty exhausting and just being able to be himself and to be loved on just as he is brought such joy to my heart.  It was hard because I realized how many times we try to change his behavior to help him fit in (which is necessary at times) and how difficult that must be for him.  It’s like asking an introvert to behave like an extrovert.  They can act like that for a while, but it is very tiring.  It was also hard because I realized that he actually fit in really well at camp.  Let me explain….

For years people had been telling us that Zack would catch up.  That he would behave more like his peers naturally.  Obviously Jim and I realized that there was something different, but other than his chromosomal abnormality which nobody can really explain the significance of, his diagnosis has been elusive.  It was easy to buy into his differences being due to his years of being sick and not having the opportunity to learn the same social things as his peers.  That his ADHD would get under control and he would become more attentive like his peers.  That he would run and play naturally with his friends .  He’s ten years old now, and the differences are not going away.  Things are still hard for him. Although he will always tell you he is awesome, he is different from his peers.  Seeing Zack at camp with other kids who are not typical just reinforced the fact that he really belonged there.  It was a perfect fit.  He loved it and had so much fun. I am so glad that we were able to see this in a place that made him so happy.

Medically, Zack is the same.  He is prolapsing several times a month.  Recently he had a particularly painful one that kept him on the sofa for three hours.  Though it was super painful for him, it was a good reminder of how far we have come.  Currently, Zack only prolapses a few times a month (any prolapsing stinks if it is happening to you). There was a time when he prolapsed daily and was in constant pain.  While our preference would be that he not prolapse at all, 2-4 times a month is definitely better.  His stoma continues to be very swollen a lot of the time which also hurts.  In addition, he continues to have periods of obstructed output.  This past week he went seven and a half hours without a drop out.  He was crabby and irritable, but once his output started back up he was back to his happy self.  His output continues to be high.  Do I sound like a broken record?  I feel like one.  BUT no hospitalizations, so we are grateful.

I have so much more I could write about, but for some reason this post has taken forever to write.  I think I’ll save the rest for another day.  Until then, enjoy this last picture of Zack lovin’ camp!

Hug your babies!

~ Dawn

And Carie S. …….you are welcome…..

 

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Special Olympics 2016 – Part 1

Before I post a zillion pictures of Zack’s awesome Special Olympics day, I wanted to share a few things that I have been struggling with of late.  As you know, Zack has been a bit behind developmentally since birth.  All along his doctors have assured us he would eventually catch up.  I have always been concerned about this and wondered how they could be certain this would happen.  I tried to shake off the unease I felt whenever we were told this and told myself to be more positive.  I wanted it to be true more than anything.

Over the past few weeks, we have been getting some discouraging reports from school. Zack is now even farther behind despite being in school more consistently.  He is having trouble remembering things he learned last year and even more trouble retaining what he is working on this year.

I had a meeting with Zack’s teacher’s on Wednesday morning before the Special Olympics to address some of our concerns.  We received an email outlining the things they are seeing at school on Friday (I asked if they could write things down for us).  My heart has been heavy all weekend as I worked to process this new information.

Jim and I have been in touch with Zack’s Developmental Pediatrician.  She is paying close attention to what is going on with our boy and has recommended a full evaluation by a neuropsychologist at the Kennedy Krieger Institute.  This evaluation will be several hours long and include extensive IQ testing.  We are hoping to get a better sense of what exactly is happening.

My husband is forever the optimist.  He has pointed out that while some of the things we were told are certainly true, there are other things that are positive.  Zack is slowly improving in reading.  Zack is pretty amazing on his computer.  Most importantly, Zack is our son.  No matter what we discover, good or bad, we will continue to advocate for him and work to help him in every way.

OK, enough of the yuck.  Now for the good stuff.  Zack is doing well medically.  He is gaining weight.  His sodium level was amazing last week.  His stoma is not prolapsing.  I am thankful that his medical situation is finally quieting down.  Is it crazy that going three months without a medical issue is quieting down?  It gives us more energy to focus on his current learning situation.

I know you are wondering why I titled this post Special Olympics 2016 when I have not even begun to tell you about Zack’s day.  I honestly did not think I had so much to say. Sometimes writing it down helps me process my thoughts and feelings and I guess I needed to do that today.  I will not keep you waiting for the cuteness any longer.  Here are a few highlights of Zack’s day in pictures.  You are welcome.

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Being greeted by cheering fans as he arrived at the stadium.

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Zack and his PE teacher/Special Olympics coach.

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Taking in the opening ceremony.

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The tennis ball throw.

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Look at that follow through!

My blog is not liking my pictures tonight and Zack and I have an early morning tomorrow.  I think I will end Part 1 of Zack’s awesome day here.  More cuteness tomorrow and no sadness.  I promise!

Hug your babies!

~ Dawn