Friday, September 11, 2009

The Teachings of Jon

Have you ever seen this documentary?

I've known about it for quite some time but it took me until just the other day to find the courage to watch it.

I purchased it on the recommendation of a friend of mine that mentioned it was one of the most touching things she had ever seen and she does NOT have a family member with DS. Then, I read in Kathryn Soper's memoir that she too had seen the documentary and was touched deeply by it as well. I knew it was time.

I would love to hear what people think of the show. I found it very moving and extremely interesting but at the same time I was left with many questions and a bit of sadness. Jon and his family are very happy so I should be happy for them but I'm just left wondering.

I would say that this film is a HUGE reminder of how important early intervention is for children with DS, those first 3 years of life are crucial, and Jon was in an institution for the first 7 years of his life, in a crib for most of that. We will never know how EI could have possibly changed Jon's life and maybe that's not important but it does leave you wondering.

I think of all the tools available now to help people communicate and since Jon is non verbal, I wonder if these things could help now. I remember seeing a communication board where you can place picture of things you want to say (different foods, different activities) and you push them on this board and they speak for you. I wonder if they have tried this with Jon.

Lots of unanswered questions but I guess the most important thing I gathered from this documentary is that if this is the worst case scenario in terms of level of function, there will still be joy. Jon is happy. Jon's family is happy. That IS the most important thing.

If anyone here in Sacramento or even elsewhere would like to borrow my DVD, I would be happy to lend it out. Just email me and I'll send it off to you, a little lending library if you will.


Loren Stow said...

I haven't seen the documentary - I will look out for it.
I don't think I know enough to comment with authority, but from what I do know is that so much has changed for all children who differently-abled in the past 50 or even 20 years!
I believe our children will be the generation that live freely, within their communities, sharing their talents and gifts with the world - where before they might have been locked away in an institution.
I think this alone will make the biggest difference not only for our children, but for the rest of the world out there - to see, really see, that our children have something to offer, something worthwhile!

Monica Crumley said...

I'd love to borrow it on Thurs night if you still have it to lend. BTW, I LOVE your new header with the newest photos. Looks awesome!

Monica Crumley said...

Thanks for lending this to me. This made me kinda sad. It also brought a little bit of fear for the future (only a little). Jon certainly has much to give, but he missed out on so many opportunities for learning and growing by being forced to a crib, eating baby food, and not given therapies that our children are receiving today. His siblings are amazing and obviously love him deeply. The dad does so much work daily that we were wondering where was the mom (and then I wondered if she was videotaping...) Anyway, thanks for sharing this. We certainly have higher aspirations for John Michael and his buddies, but if he were to be like Jon, then of course we would love him unconditionally and help him with his needs. I think I'd worry, like the parents, about what would happen to Jon after they die. Hopefully the siblings will be able to care for him. My heart is heavy after seeing this... and I'm glad we're further along on the journey because it would've been more difficult to watch even just last year.

Anonymous said...

I'm reading Kathryn Sopers book right now and just read her bit about it- where did you end up finding it? I need to see if our library has it.

tania said...

can you please give me details about this documentary? from what you mentioned, it covers most of my anxieties about our son Qeis. we live in England, so unfortunately cannot borrow it from you!

Anonymous said...

Any one looking to purchase this or see some free video clips can check out

This documentary has been on NJN public stations in New Jersey during November 2009. This has probably been one of the BEST documentaries, if not overall programs, that I have EVER seen. I don't really know what else to say other than you should really watch it.

Twyla ~ said...

hello I know this an older post of yours but I just wanted to say I was touched when i saw this documentary. yes i was saddened to hear he was institutionalized while he was young. My brother David will be 47 this Oct 31 and he has never spoke much. there wasn't as much help for parents back then and my Mom has ALWAYS had him since she was 17. he is her everything. She would not have dreamed of putting him in an institution. he started school early & went until he was 21, then worked at different facilities until a few years ago. there are some with Downs who are nonverbal, and its not because they didn't get the help they needed. David is a joy & i wouldnt want him any other way.