This week the #LightTheWorld campaign's theme is Light Your Community, and I'm happy to welcome Mimi of messymimi's meanderings as a guest blogger today. I have enjoyed reading her posts about her involvement with rEcess, and asked her if she would share a bit about that program with us. She graciously agreed. I hope that her story will inspire us to look around and see how we might be able to serve in our own communities.
Several years ago, a little boy named Eliot was born, against the odds, with Trisomy 18. (Most babies with that DNA defect don’t make it to birth.)
He lived 99 days. His parents were left with a lot of pain at his loss, and with a desire to help parents of special needs kids the way they had been helped and touched by so many. They founded 99 Balloons, for the number of days their son had lived, and began sponsoring rEcess. (The capital E is for Eliot.)
Every parent knows how hard it can be to keep that connection with the spouse alive and growing when the demands of a family are calling out to you all of the time. It’s even more so for parents of kids with special needs, as you can’t leave a child with a feeding tube or in a wheelchair with the teen up the street and go on a date night.
That’s what rEcess is for, to give parents of special needs kids that couple time that is essential, or single parents of special needs kids a night off to do whatever they please.
When i first came to the church i now attend, i had no idea there was such a program. My first stop was the nursery, to volunteer for Sunday mornings. When i found out about rEcess, my heart was smitten by the idea.
Our rEcess meets 8 times a year. The volunteers get together at 5:30pm for dinner (which is provided by other volunteers who support the program), the families arrive at 6pm, parents are expected back at 10pm.
What happens during those four hours is sheer joy and fun and a bit of chaos. The special needs kids and all of their siblings are fed the meals their parents bring with them (because many of them have very strict diets), and then you can almost hear the words "Let the wild rumpus begin!"
There is game time in the gym. Kids in wheelchairs get to get out of them if they want (and all of ours want!) and crawl or roll or just sit on the floor and play. There are arts and crafts, there's music, and there's a lot of running up and down the halls of the Sunday school area. Younger kids have toys everywhere. Air hockey will be involved, and at least one of the pool tables will be co-opted by the younger kids, who adore simply grabbing the balls, running around the table and dropping them in the pockets, then running back to grab them again when they roll to the opening.
We always urge the kids to get in their jammies and watch a movie after about 9pm, so they won't be too wound up to go home and go to sleep when the parents arrive. Some nights we are more successful than others.
Every special needs child has an adult assigned specifically to her/him, the siblings are grouped together with a volunteer or two for each group, and we have someone assigned to do medical care and change diapers. In our case, we are blessed to have a pediatrician, an ICU nurse, a respiratory therapist, and a couple of special ed teachers among our volunteers, so there's no shortage of people who can do these things.
Most of the time i am paired with a special needs kid, and i love it. For consistency, we try to put the same volunteer with the child each time. The young lady i am paired with now has had developmental delays from a very early age, and is now showing all the signs of senile dementia (and not even the Mayo Clinic has figured out why). She tends to be one of the quiet ones, so she and i often go sit in one of the "quiet rooms" we set aside for children who need them, and we play board games or get on my tablet and play the PBS kids games.
Every rEcess night is precious. The volunteers get as much out of it, as much joy, as much refreshment of spirit, as do the kids and the parents.
Ah, those parents! To see the smiles on their faces as they come in to get their kids, to hear them tell about restaurants and movies and concerts or whatever they did! You can see they are so blessed to have had an evening off from being mommy and daddy and just be a couple again, or in the case of single parents, just to get out with friends or even go shopping alone. No worries, the rEcess volunteers are on duty, please go have a good time. That's what the parents do, they go have a good time, and it's a beautiful thing.
Everyone has a good time, and can hardly wait for the next one. That's why i love being a rEcess volunteer.