On profanity, and pride

Phil and several of you challenged me to blog – so here goes!

I am so moved by the comments we’ve received about the film, my children and our family – I can’t even begin to express it.  I, too, am grateful for the wonderful  Deedah “shout out” from the incredible Kelle Hampton.  What I love so much about Kelle is her ability to, not only inspire, but to also, “keep it real.”   She has a great sense of humor that will serve herself, her children and now so many others well through her blog.

The fact that her favorite part of Deedah is when Jonathan says “s**t” puts a huge smile on my face!  I, do, however, have to correct the record because my child’s salty vocabulary is actually not as sophisticated as Kelle’s blog entry gives him credit for.  The actual word that Jonathan says in the film is “Dam*it”, which just so happens to be an abbreviated version of my profane phrase of choice – “G** Da**it!”  Yes – another proud parental moment!

I don’t have to wonder whether Jonathan picked up that word on the playground or at a friend’s house or at karate because “GD”- just like my father before me- happens to be the phrase I use on the rare occasions I go nuclear and you’re wise to clear the room.  I think I’ve said it in front of my children twice and clearly that was all it took for Jonathan to embrace it as his own. :-)

The day the camera was rolling on the miniature golf course and he unleashed the D-bomb was, as far as I know, also the last time he said that word.   (He only needed to be told once – “Say that word again and we’re going home.” )  But although he was reprimanded for using the word, of course, as a parent, I had to chuckle.   And as a parent of a child with Down syndrome I had to chuckle and then smile with the knowledge that I had captured on camera what I think of as “Down syndrome Gold.”    That’s because our children are often so stereotyped that I sometimes feel when people are describing them – (and it is almost always well-meaning and so I’m not trying to be negative here.)   But when people say, “Those children are ‘so loving’ and sweet and cuddly, etc…”  I sometimes feel like they’re describing a golden retriever puppy and not my son.

For Jonathan, like all children, has his golden retriever moments to be sure, but he also has his Doberman days.  (Great – now I’m stereotyping DOGS!!!)   Anyway, what I hope the “Da**it!” does is show that our children with Down syndrome are individuals, who are as capable of displaying their emotions and frustrations as the next kid.

As for why we bleeped out the D-word, leaving it to the viewer’s imagination, we found in early screenings of Deedah that the word got such a knee-slapping response that people (especially children) were laughing so hard that they missed the next part of the movie.  We also had a response from a local principal who was willing to show Deedah to her entire school, including parents, but was concerned that a few parents might have problem with the D-word.  Although I was initially a bit resistant, (stop censoring my art, man! :-)) it surely makes perfect sense that no principal wants to take a phone call from an irate parent saying, “why did Susie learn a new word in school today that certainly wasn’t on her weekly vocabulary list?”

We agreed to bleep out the “Da** it!” in the final version of the film because one of our goals is to show Deedah to school children, school staff members and parents.  We were grateful for that local principal’s willingness to show the film and we didn’t want one possibly offensive word to prevent that from happening.  That’s how the “Da**-it- less” Deedah came to be.

So here we are – more than a year after the “Da**-it!” clip was shot.  I’m happy to report that Deedah, thanks largely to Kelle, is gaining traction.  Since the miniature golf meltdown, Jonathan has added more choice words to his vocabulary.  He is particularly fond of “Dang it” right now, which I find irritating but I guess, at this point, is a reasonable compromise if used in moderation.  He is also partial to the word “awkward,” so much so that at one point this summer I threatened  to start charging him 25 cents for every time he said it.

As for “S**t”, I will join Kelle in saying that that is still a goal for Jonathan, as it is now for Nella.  Jonathan’s  speech  has improved astronomically since the film was shot, but alas, we are still working on the “sh” blends.  I know for a fact he couldn’t have said “s**t” when the film was shot because just the other day on the way to karate, he was looking at cloud formations in the back of the minivan.  He shouted out, “Look mom ,  a camel and a sip.”  “A what?”   “A sip!”   “A WHAT?”    “A SIP – A PIRATE SIP!!!”    And looking up at the clouds I saw it – a huge two humped camel standing right alongside at pirate sHip.

Oh – s**t – I’m so proud ! :-)

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12 Responses to On profanity, and pride

  1. What a fantastic blog, so great to hear that the sense of humour that all us mums need is alive a well within you.
    your Children are such a credit to you.
    as a mum with a DS son who has just turned 3 (within the last week) I understand the frustrations For all involved esp Johnathon at struggling to be understood, or too understand and I am so thrilled his speach is progressing well.
    As I type I am waited with baited breath for a copy of Deedah, to be ship from Downs Footprint all the way to us here in England, United Kingdom.
    Many congratulations on such a successfull and inspirational film.
    Thank you all, and most of all Thank you Charlotte and Johnathon, just for being you x

  2. Joan Redeen says:

    Challenge accepted and beaten! What an enjoyable blog to read…have no doubt in yourself that you know what you are doing when it comes to blogging! Agreed on the “Those children are ‘so loving’” – well meaning, yes…but I always remind folks that they are welcome to live with our son for a week and see what life is really like. We have two boys – Justin is 20 and Jared is 19…Jared has Down Syndrome and has called his brother Audie since he was 3. I LOVE Deedah – I’m now teasing our Audie that we could just call him Deedah, he prefers being Audie of course! Jared’s new word in recent months is “crap” and I laugh each time he says it, but at his age I choose not to reprimand – he is his own person, and (I have to remind myself) an adult at that! Enjoy these years ahead – the adventure that parenting always is, and thanks for sharing your stories!

  3. Lianna says:

    I actually came online to find a pizza dough recipe from a blog I follow, but had to sneak a read here…And I am so happy I did because right now the big curse word in our house is “Damn.” Gabe says it in context and not less than 10 times per day. We’re working on “Not damn. Use darn.” — which we hear him self-correcting (censoring?).

    I agree wholeheartedly with you on breaking the perception of “they are so happy, aren’t they?” — which I heard again yesterday when I took Gabe swimming at the local recreation center. Like you write, Gabe is completely capable of emoting the same range of emotions as this woman’s grandsons who were at the pool with her.

    Great post!

  4. Judy Baker says:

    Such a great blog! My Hannah’s Sh**s are actually “Shoot!” Thank you, Meryl Streep, in Mama Mia! But I suppose “shoot” is better than the alternative; then again, after reading your blog “shoot” seems so insignificant now. I love it when you say that our children with Down syndrome show their emotions, because as you and I both know, they are not always so sweet and angelic as everyone likes to portray! They are HUMAN and they have EMOTIONS. My little one can be very salty! But I love her to the core and have learned a great deal about life and about myself from my dear Hannah. Often times, she is my mirror and I have to stop in my tracks when I am about to react. Thank you Hannah! I truly loved what you shared… thank you.

  5. I recently found the trailer to your film….so glad you made this and so proud of your children…they did a great job!! I had to smile when I learned that Deedah is the nickname given to your daughter by her brother because Dah is the nickname my youngest who also has Down syndrome calls his big brother ….as a result of trying to say brother ;). I was inspired by the film and just wrote about it on my blog…I am also looking forward to purchasing this for my son’s school.


    Cheri …mom to “Dah” (Luke) and Reid

  6. Gem says:

    seen your trailer and joined the FB group, just hoping hoping you have some plans to release it in Australia (or Australian regional format) in the near future please please please!!! :) Also I did try to buy it from your main website as figure I could watch it on my laptop in USA region format, but the drop down box for countries wierdly doesnt have Australia in it.

  7. admin says:

    Hey there down under,
    thank for your interest in Deedah.

    We can send overseas. Here are the direction from the website:

    *International ship 1st Class no track: Canada$7 other$13. Send email&paypal address to info@downsyndromefootprint.org

    Sorry, we don’t have Deedah in the Australian region format. We never anticipated sending Deedah beyond our borders.

  8. P K says:

    I think the video has a caption of “Oh ****”, doesn’t it?

    I have had therpists mention and have seen a bit myself how particular and feisty and stubborn my son can be (almost two). But his super sweet natured big sis is the same, fine and easy going but if she has a preference on occassion–she won’t budge.

  9. P K says:

    Oh I got here from Kelle’s Small things blog and she’s an incredible healer.

    I am pretty much still crying from your video and can’t wait to meet your family and play with my girls. ;). I can’t wait til mine wake up!

  10. Pauline says:

    I would like to buy your video, but it was not possible to order a shipment to Norway.
    Is it any way you could arrange so we could get a copy? I have a 5 year old son with Down Syndrome and would love to see the movie!

    Ay way you could fix this? Pls let me know!

    Thanks & Best regards


  11. Pauline says:

    Just saw your answer above, so I have sent an e-mail. 😀

  12. Hi, I am so glad to have found your trailer and now your blog.
    I am laughing so hard. my son has ds and I have three older girls I truly want to give their school either class by class or grade by grade some type of “talk” about individuals with ds or other types of “disabilities”…Could you please help and point me in the right direction in doing so. I plan to follow your blog and keep up with you all if you dont mind and you are welcome to stop by and “meet” my family too


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