August 22, 2007 7:44 AM
For Jonny, Down syndrome rocks!
This has been a great - and very independent - summer for Jonny!
For those of you new here, Jonny is my 15-year-old son with Down syndrome. My 8th child.
His summer started with a week away at Boy Scout camp - completely unsupported. I remember when he first wanted to join the BSA troop and the leaders were very hesitant, not knowing what to expect. At first, Tripp had to go to all the meetings with him. But Jonny proved himself and has made many friends. Everyone felt he could handle a week of camp on his own.
And he did.
He has done two summer plays so far - High School Musical and The Music Man - again with no extra support. These are three-week theater camps (Growing Stage/Loudoun County) which go 9-3 Monday through Friday with 2 performances at the end. The past four summers he has been involved, but so have his sisters Sophia and Maddy. When they were unable to do it this year, I called the Growing Stage and asked if they wanted me to hire an assistant for Jonny and they said no way - he is fine on his own.
And he was.
For six weeks, I dropped him off at 9 and picked him up at 3 - just like all the "normal" kids. I also - at the directors' request - went in and talked to the kids about Down syndrome and disabilities. Having known Jonny for years, they were shocked to hear that 90% of babies with Down syndrome diagnosed prenatally are aborted. They are much less callous than their parents. This is the generation that will really see the breaking down of even more prejudice. (For more on that see New testing for Down syndrome: Good news or bad, which brings to light the nationwide phenomenon of teens with Down syndrome being elected Homecoming Queen or King)
Right now, Sophia, Maddy and Jonny are in another three-week theater camp - this one through Loudoun County Parks and Rec - doing Disney's Aladdin. Maddy is Princess Jasmine, Sophia is the Genie, and Jonny is Rajah the Tiger and also a baker.
What is amazing is that Jonny is not superstar academically. He still can not read and can barely count to 20 - after years and years of drilling. Yet he can remember things he wants to remember - like lines and cues and stage blocking and entrances and dance numbers. And though his speech is unintelligible much of the time, he makes himself understood and the directors always find a way to incorporate him.
The directors love having him because he brings the enthusiasm level of the kids up enormously. His joie de vivre is something we all wish to see in our children - especially during the teen years when they are prone to being locked in self-consciousness. The kids adore him, and he is always surrounded by friends.
I just don't know what the world would have been like without Jonny. From his earliest days, this Elton John song, which had always been one of my favorites, would make me cry when I thought how it applied to him:
Your SongIt's a little bit funny this feeling inside
I'm not one of those who can easily hide
I don't have much money but boy if I did
I'd buy a big house where we both could liveIf I was a sculptor, but then again, no
Or a man who makes potions in a travelling show
I know it's not much but it's the best I can do
My gift is my song and this one's for youAnd you can tell everybody this is your song
It may be quite simple but now that it's done
I hope you don't mind
I hope you don't mind that I put down in words
How wonderful life is while you're in the worldI sat on the roof and kicked off the moss
Well a few of the verses well they've got me quite cross
But the sun's been quite kind while I wrote this song
It's for people like you that keep it turned onSo excuse me forgetting but these things I do
You see I've forgotten if they're green or they're blue
Anyway the thing is what I really mean
Yours are the sweetest eyes I've ever seen
~~~~~~~~~~~~~~~~~
I guess I'm not the only one who feels that way. Four days ago, Sophia started a Facebook group "I wish I were as cool as Jonny" - it already has 119 members!
~~~~~~~~~~~~~~~~~
For more on Down syndrome at this site, use my personal Google in the right sidebar, or click the Categories tab above.
And here's a little Jonny slideshow:
Posted in Disabilities, Down syndrome, Family, Loudoun County | Permalink
Comments
Barbara,
Thank you for this, you have changed my heart *so* immensely towards down syndrome kids. Thank you thank you thank you! ~B
Posted by: B | August 22, 2007 8:50 AM
Those were so great, Barbara. Thank you for sharing them with us.
Posted by: Holly | August 22, 2007 9:22 AM
I love that picture of Jonny and the baby- thanks for this post!
Posted by: Valerie@Consider It Done | August 22, 2007 1:41 PM
What an inspiration Jonny is! Thanks for sharing about his life with your readers.
Elizabeth
Posted by: Elizabeth M Thompson | August 22, 2007 1:56 PM
Wow Barbara, You are a woman after my own heart! That is absolutely of my favorite songs, too. Weird. Thank you for sharing the sweetness of your life with your readers. I appreciate the joy Jonny brings and am encouraged by all Jonny is doing to seek more inclusive opportunities for my own son in our community. Thank you and God bless.
Jenice
Posted by: Jenice Pearl | August 22, 2007 6:29 PM
Hi Barbara!
I'm back from three weeks of visiting my family in Mexico.
Love the post, love the song! Johnny is so cute and he looks so enthusiastic. I'm sure he is the heart of the party wherever he goes.
I missed you. I'll be keeping in touch.
Love always,
Nilda.
Posted by: LadyLovas | August 22, 2007 7:41 PM
Wonderful story thanks for sharing the pictures. I have wondered how my Andrew will do if he can not ever read, and write etc. Obviously after seeing your pictures there is the very real probability of him doing awesome. Thanks for the encouragement.
Amy
Posted by: Amy | August 22, 2007 8:44 PM
I'm glad Jonny had such a great summer. It was too short, and hot!
Posted by: Julana | August 24, 2007 5:35 AM
