Friday, June 22, 2012

Tuba's Picnic

Today I had lunch in the park. The little ones and I went to Tuba's end of the year picnic. All the kids in Tuba's class, the teachers, the aides and many families joined together. The "kids" are all high school age 14-21. I love to see these kids together, playing and socializing. I love to meet their families and catch up with the ones I know. I have watched these kids grow up along with Tuba. Many of the kids have been together in the same class since they were in preschool. Wow have they gotten big!

Hmmmm....I've sat here at my computer for an hour trying to decide what to say next. I've written and deleted numerous times. I've teared up. And sat here some more. I don't know how to put out there what I'm feeling.

Since I don't seem to know where I'm going with this I'll start by telling you some of the things I saw today.

I saw a Dad take his big teenage son out of his wheelchair and carry him to a slide and then release him so he could go down. He did it several times and the boy was thrilled. It made me tear up to watch.

I saw a kid with fresh scabby scars circling his head from a recent surgery.

I saw a mom pushing her daughter on the swings....a daughter who is almost as big as her mom.

I saw four kids lined up in wheelchairs watching the others run around because their wheelchairs can't go in the wood chips.

I saw an aide blow up a ball and play with Tuba.

I saw a girl having a big seizure while her aides attended her.

I saw George and Sis run around and play. They were so comfortable around these kids.

I saw a dad lovingly feeding his daughter. He chuckled when she swatted his hand away because she didn't want what was offered.

That's what I saw. Here's is what I feel. Joy, Sadness, Hope, Uncertainty and Love.

I don't know why I am struggling emotionally. I think it is that I don't know what the future will bring for Tuba...or for these other kids. Right now they are in a great school with an amazing teacher. They have a stimulating program. They have fun! These kids have individualized programs to meet their needs.

At 21 they will all leave school. And then what? Some will be able to work. Some will live on their own. Most will get some money from SSI (if the budget still allows). But, even with jobs and federal help most of these kids will live close to or in poverty. Some, like Tuba have families with the financial means to keep them at home. But is that going to be a fulfilling life?

I don't know what kind of "job" Tuba will be able to do. I want him to have stimulation in his life....not just sit at home. I know other kids from Tuba's program, kids who aged out of the school, who are doing just that...sitting at home. Stuck. It makes me sad, and scared.

In our local paper a special education teacher wrote a letter on this same topic. He suggested that kids/people like Tuba should be in "school" forever...not cut off at 21. He stated that learning goes on for life. I agree with him. I wish there were more options.

I'm put this post together so it makes sense. I'm struggling with Tuba's future. I'm struggling today.


  1. Dear Friend,
    Thank you for this transparent post. I had no idea of the struggles and joy and heart ache and victories you and the Lord face each day with Tuba. I know that he is in a family with Radiant Joy. Tuba is surrounded by love and strength and encouragement. His future is just like your other chidlren's futures: in God's hands, to be revealed one day at a time, one step at a time. I would fear, too. I would cry, too. I would be happy and sad, too. I've seen God put my kids in places I could have never imagined possible, and God has no favorites. I will from now on be joining you in prayer for Tuba, and God's amazing plan for his life. I am blessed to be your friend.

  2. In loving Tuba, you and Cam and your family are demonstrating the best example of caring responsibility. I agree with the father who said, "school shouldn't stop at age 21". It doesn't for most of us. And we will, as a family, work to give Tuba a rounded education throughout our lives.

  3. Hugs to you sweetheart. I feel your pain and agree that school should be an option for Tuba and others. Find comfort in knowing that God will give Tuba (and you) what you need.

  4. This is Cam: We have so many resources and I am afraid for the future. I fear for his classmates that are poor and struggling already. I fear for the disabled in the 3rd world, those who suffer and die, those special needs kids that are victimized and abused. I ache for the day that our other kids are all grown and Tuba is lonely...all we can do is trust and hope that God is not AWOL, but watching our six, and that in the end, there is a soft place to land

  5. Becky,
    I don't know who "Deborah" is (or maybe I do?) but I would like to "Ditto" her comment. God knows what you can handle. Trust in Him! You are doing an amazing job already!!



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