Tuesday, February 2, 2010

Developmentally delayed parents (and the kids who love them)


This epiphany brought to you courtesy of this movie.

I've had something percolating in the back of my mind since I told you about that mom who stared so rudely at Max: Candace's comment about how if she catches girls staring at Faith, she'll wheel Faith right up to them to say hello. The "in your Faith" approach, I called it. It's a great response, much better than my snippy "Do you have a problem?!" Then over the weekend I saw a documentary about people with disabilities, and I realized I have that response because I am a developmentally delayed parent.

I was so excited to see Shooting Beauty, which I'd mentioned in the recent post about films with people who have disabilities. It was featured in a local film festival, Reel Abilities. Shooting Beauty was both incredibly moving and meaningful. Photographer Courtney Bent had planned to shoot people at a United Cerebral Palsy day center in Massachusetts. Only she found that her photos were depressing, not inspirational. So she handed over cameras to the adults there and let them take photos. Some of the adults had extreme physical challenges, like EJ, who didn't have much use of his hands. Courtney adapted the camera so he could snap photos with his chin.


Here's the trailer.

I laughed. I wept. But mostly, I was inspired. At one point, a wheelchair user named Tony says that when he sees people staring at him, he makes a point of going up to them and saying hello because if they make assumptions, they're going to be wrong. And that is the precise moment when I realized that he is so right, and that I am a developmentally delayed parent.

Unlike the trillion baby books out there that tell you everything except how fast your kid's eyebrows will grow, there are no books that give you a timeframe for your development as the parent of a kid with special needs. No book says, "Six months after the diagnosis, you will stop bawling every day. At one year, you will feel an emerging sense of acceptance about your child's challenges. At approximately 18 months, you will stop mourning the child you lost and start cherishing the child you got." There is no What To Expect, Special Needs Edition.

My main delay is the defensiveness. I have not outgrown it; the more mature response to people's stares would be a willingness to engage in a calm way, perhaps even educate them. The more mature response would be to help people see what a great kid Max is and not swat them away. I am not saying this self critically; every parent of a kid with special needs develops at his or her own rate, same as our kids. I'm just saying...aha.

After the film ended, Courtney and Tony came out for a Q&A.


Here they are.

I raised my hand and asked how they thought this film had changed perceptions of people with disabilities. Both said the same thing: That it was opening the lines of communication and starting conversations. Tony mentioned that at screenings of the film, afterward kids have come up to him and embraced him.

As Dave and I walked out of the auditorium, I vowed that the next time we were around kids or adults who were staring at Max, I would start the conversation. For Max's benefit. For other people's benefit. For my benefit.

Meanwhile, I was so wowed I bought two copies of Shooting Beauty to share with you. Leave a comment and I'll randomly pick two winners.

68 comments:

  1. I borrowed some of your post and quoted it back to you! I have to see this documentary! Thanks for sharing. especially the part of about the what to expect book... sob!

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  2. Dear Ellen,

    I like the concept of a developmentally delayed parent.

    Some of us might well say it is neither the child nor the parent, but it is society.

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  3. Wonderful post. Despite fifteen years of being a parent to a child with special needs, I think I still regress at times into being developmentally delayed. Sometimes the anger serves a purpose, though and can shake people up.

    I'd love a copy of the film, especially to show to the group I work with -- an organization that is working to improve the quality of healthcare and access to healthcare for children with special needs (NICHQ).

    Ellen -- I am also wondering how you use random.org. I am hosting a giveaway on my own blog and can't figure it out. Any way you can give me a tutorial?

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  4. Barbara from BostonFebruary 2, 2010 at 2:14 AM

    When I ran a sattelite work training program in a leather factory for mentally retarded adults we received cameras and film from Polaroid for my clients to use. They had a terrific time and shot some memorable pictures. One of my guys even let me borrow his briefly.
    I would love to have this movie.
    Actually my official title was a (developmentally Delayed) Day Care Developmental Specialist.
    cglasshag@yahoo.com

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  5. Barbara from BostonFebruary 2, 2010 at 2:18 AM

    If this still works I get the feed of To The Max

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  6. Susan, Mum to MollyFebruary 2, 2010 at 4:24 AM

    Are Aussies eligible to enter Ellen?? (I'll happily pay postage!)

    I'd love to see "Shooting Beauty", but I'm not sure it'll make it Down Under otherwise.

    I too struggle with using the anger for good and calmly engaging the starers...

    As always, excellent post.

    Susan, Mum to Molly
    Sydney, Australia

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  7. I will hold my hands up to this one, there are days when I just can't be nice to people, thats being honest. It is more to do with my form and how tired I am etc rather than the people themselves. As my child is two we don't get a lot of stares just yet, a lot of his behaviours are appropriate for a two year old but in a few short years they won't be so I think my development delay may get worse before it gets better. Like my child, I will just have to learn to cope with what life throws at me. Great post, a lot to think about there:) Jen.

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  8. I'll definitely put that film on my list of Thing To Do. I have cared for several special needs children, and currently am caring for a little girl who is 7 years old, and in palliative care. I have found that most of these children have a very outgoing nature, and relate really well to other people. One little boy, with severe spastic quadraplegia, and no speech, could outstare anyone, and when they looked at him he would smile with the biggest smile you ever saw. I rarely saw people succeed in avoiding his gaze! Our current little one, when only two or three, would wheel herself up to people in a nursing home, pat them on the knee, and say "Are you serious?" (Something she copied from her big foster sister!) I am in awe of the impact that these special people have on everyone. I love reading the stories of Max. Yes, I can understand that you want to protect him from negative attention, but I find that these beautiful children have a way of changing people's hearts and minds. I have always tried to be open with people, especially children, about what is different about my 'kids'. When one little girl said to me "Your baby is ugly", I turned to her and said, "well, I think she's beautiful, just like you are." (She did have an odd shaped head - still does, but now she has hair so it isn't so noticeable. I recall one day when I was undergoing chemo and was 'fat and bald' that a little boy on a train asked his Mum, "Why doesn't that lady have any hair." I just opened my mouth to explain, when she hit him, hard, and told him to be quiet. My heart ached for him, as I would have been happy to tell him why I was bald. Generally, I find that children are very open with their questions and accept explanations very readily - much more than some adults. God bless you, and your family.

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  9. As a parent to a typical child and a special needs child, I consider myself a work in progress. Some days, I have it all under control, and other days, not so much.

    I would LOVE to see this documentary.

    Thanks for sharing, Debbi

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  10. Adelaide, you're right, it's not just parents who are delayed! Susan, I'd be glad to ship the DVD to Australia. Debbi, "Work of progress" is it exactly.

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  11. Our school district is starting a group to try and get the abled and the disabled working together, while providing support for the families of SN kids. I would love to use this as a start to our library of offerings for parents.

    momofabc at nycapp.rr.com

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  12. Wow... like you, my first response is to be snippy... I hate when people stare at AJ- it breaks my heart and raises my hackles. Saying hello- what a novel concept. :(

    -Ali

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  13. Ellen,
    Great post! How would you start the conversation without being rude? Seriously, I get too emotional and can't think straight when in the moment and I say nothing. What will your script be -- hello, and introduce yourself? If I could get some ideas, maybe I can actually try them. Thanks again for another thought provoking post.
    kct

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  14. I think we are all developmentally delayed... we expect everyone to look, think and even feel like we do… or at minimum understand how we think/feel. When they don't... we stare… we question... I don't claim to know what it would be like to be a parent of a child with special needs... I do know that we all have one special need that can either divide or optimistically unite us. A special need to be respected and acknowledged by those we happen to be filling the space with at any given moment.
    Thank you for sharing the touching video and your thoughts. Communicating, though difficult at times, is vital to understanding how to acknowledge and respect all those around us... including those with special needs and special beauty.

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  15. This giveaway is AWESOME! I worked for many years with individuals who have physical and/or developmental disabilities. I think that many people can't look past the disaiblities to see their abilities and realize that, fundamentally, they are PEOPLE! Everyone has their own idiosyncrasies (I know I do!) but, at the end of the day, everyone also have amazing elements of their personalities! I would love to see this film and share it with some individuals I know who teach students with disabilities. Thank you for sharing with me!

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  16. Ellen- Thank you so much for sharing this. Reel Abilities looks even better than Sundance!

    As a sister of a special needs sibling and now a parent of both a typically developing and special needs child this really spoke to me. I guess that's what its all about - communication. I will vow too, when people stare, engage them in conversation. Educate them. I hope I will feel better; instead of tears of anger it could be tears of joy. You inspire me. Keep it coming.

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  17. Awww, Ellen. That was nice of you to mention me. Let me just say that I DO NOT FIND THIS EASY! It is often painful for me and I want to run, screaming away! But Faith doesn't know any better and I want her to, I don't want her to be like me, a wallflower. So it's not JUST for those people who don't understand: it's for her too! I am so excited to see this movie, so put me on the list, k!

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  18. sounds good...I have always tried to be pretty positive with stares or questions...I like to use it as a teaching as people fear what they do not understand. Typically for kids I like to say to them that they can come say hi. For adults I do not necessarily say anything unless they ask a question.

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  19. THANK YOU for posting this. I really need to see this film.

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  20. You are so right, we need a What to Expect book for the special needs parent!

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  21. Great post! I would love to see this film! Thanks so much for sharing.

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  22. I've often wanted to attend our local film festival like that but haven't had the chance yet...so glad you did. It's a day of inspiration like that that will keep us going. I can't imagine how high you felt afterwards. Super!

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  23. Wow this was a great post Ellen! Nice job! I would love to bawl my head out with this story!

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  24. When I was first coming to terms with having a special needs child, I met a young (19) white woman who had adopted a severely disabled black preteen boy. When I asked how she dealt with the stares she said she kept pictures of her and her son with her and would give them to the staring people saying "here, now you can stop staring because you have a picture" I was, and continue to be, in awe of her...

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  25. What an awesome revelation! You were given an incredible gift of insight. I admit to sometimes reacting to the stares the way you did with that lady. For me, it's a Mama Bear defensiveness. I have spent the last three years protecting Marissa from so much, I feel it is my role to protect her from the cruelness and ignorance of others too. But, if I step back for a moment, I realize that it does her no good to defend her in that manner. She will encounter hatefulness her whole life and I need to prepare her on how to deal with it without becoming bitter with the whole world.

    Thank you for your post, it opened my eyes too.

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  26. Great, thought-provoking post. I will definitely think about my responses to the 'starers' differently after reading this. Would LOVE to see that documentary. I went to the website but it doesn't look like it's for sale to the public yet. When it is, I will definitely be purchasing! Thanks so much for sharing, Ellen.

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  27. I'd love to see the movie. And you know what? I really think kids with special needs help ius face issues that parents of children with typical needs never have to face and by facing those issues and working through them we work through our development much quicker. Just my two cents

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  28. I'd love to see the movie. And I have several families I'd love to share it with too!!

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  29. When Jailen was around a year old a woman in a waiting room asked, "What's wrong with him?" with a smile on her face. I quickly snapped, "Why would you think something's wrong with him??" Her response, "Well I could tell by the way he sways his head left & right." I hadn't yet accepted the fact that the world could look at him & see something out of the ordinary. To me he was & always will be my beautiful baby. It killed me that she noticed, but I apologized for being rude & told her his story. She proceeded to ask me to write his name down on a piece of paper so she would remember it on Sunday when she'd ask her church to pray for him. Boy did I feel like a complete jacka$$!! Anyway, I gave her his name, thanked her repeatedly, & till this day have not snapped at anyone else. Staring isn't always out of ignorance or being rude. Some people really are generally concerned & curious. Maybe they just don't know how to start a conversation because I think as parents of special needs children, we have a reputation for being so rude/snappy/defensive whether we mean to be that way or not. When I see someone staring now, I smile & say hi. :) Thanks for your post. I'd love a copy of the movie!

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  30. Also... I was wondering if you knew where the Shooting Beauty movie can be rented/bought.

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  31. Hi Ellen -- it sounds like you already have your winners of the DVD, but do you know where it's available for purchase? When I first read your list of disability-related movies the other week I asked our librarian at Bloorview to order a copy, but it wasn't available. Do you have a link to where it can be purchased?

    I am so eager to see this film.

    I don't know that parents ever lose all of their defensiveness about their child's disability. There are some days when I'm in the mood to "educate," and some days when I'm not. And I think that's okay! :)

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  32. Ellen,

    What a great post!! I love the "what to expect" book idea!! Too bad there isn't one!

    I would love to see this documentary! What a great idea!

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  33. I like the "in your Faith approach." If I see someone staring and Austin looks back at them I say "Austin, don't stare...that's not nice". Usually then the rude adults are embarrassed. That movie sounds refreshing!

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  34. I definitely want in on this giveaway!

    We haven't had to deal with stares too much yet (well, except for the twin thing). So far, I've found most people to be curious and not rude.

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  35. I contacted the photographer to get info on where you can get the DVD, stay tuned.

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  36. Would love to win, but if I don't, I will seek this movie out!

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  37. Great post..

    That sounds like a great movie. I am quite fond of documentary's of all kinds. and photography so that mixes the best of both worlds.

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  38. Oh I would love to win a copy. So jazzed to see a film like this. My lover man and I are both in chairs and have been talking about doing a coffee table book of photos from chair level. I really enjoy your blog,thanks!
    kaytewatts AT aol DOT com

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  39. Ellen, thanks for the post, and commenters, thanks for all the comments.

    I too am a developmentally delayed parent. My problem is that I tend to forget that my little guy is right there and that there is a very good chance he understands what I am saying. I am working on the positive explaination of autism and being non-verbal. It is hard.

    Janet

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  40. As a somewhat new parent (18 months) of a developmentally delayed child, I know exactly where you are coming from! That is why I LOVE reading your blog! You put it out there like it is!

    I find my self in situations where I don't yet speak up or know how to handle when I hear the "R" word or when I find people staring at Vinny- right now he is still little so I can about imagine what the stares and comments will be as he starts becoming a young boy like Max!

    Hugs to you and Max!

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  41. I hope this doesn't come off as insensitive or anything, I really mean nothing by it.

    The staring.. i admit im guilty of it. I think its a reflex action. Its not pity, maybe empathy. Is that a terrible thing?

    I'm starting to feel very guilty. I'd also maybe smile at that child for a little bit longer than i'd smile at another child; stick my tongue out when i might have not usually. Try a bit harder to make them smile.

    Is it the extra attention that would bother you? Even if its extra "nice" attention? Differential attention?

    I've been thinking about this since you posted about "the mum that stared".. im feeling at a loss. Avoiding eye contact to me is like saying something is wrong.

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  42. i'd love to see it. i'd also love a "what to expect" book - maybe you should write one! maybe we all should.

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  43. Sounds awesome. Here is my random comment. :)

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  44. I absolutely love your blog; mostly because I learn so much, and well, who wouldn't love Max and your family? :)The first post of yours that I read was the one explaining how to properly react when meeting a child with special needs. Thank you for teaching me and many others so much!

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  45. I've been discussing adopting with my family over the past few months, specifically adopting a child from Ukraine. My 15 year old son's reaction to seeing some of the children my husband & I are considering was: "I don't want a retarded brother."

    Sigh.

    He has ADHD & Bi-Polar Disorder.What he doesn't know is how hard it has been at times to cope with his special needs, and help others accept them. Especially since his issues are not visible, but the behaviors associated with them are very obvious. I've read all of the "what to expect" books. None of them say anything about what to expect when your child is diagnosed with a disability, visible or otherwise.

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  46. I would love to see this documentary!! As an adult adjusting to life in a wheelchair, I too am still stuck in the defensive attitude all too often.

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  47. Our little girl, who is 3.5, has one of those 'invisible' disabilities: she is on the autism spectrum. On the surface, she looks 'normal' and only begins to elicit stares and comments when she doesn't engage with those who are trying to get her attention, or when she engages somewhat inappropriately. Frankly, I'm not even sure what to do in this context. Some of her preschool mates or random kids on the playground will ask me, or another adult (like their parents) things like "Can she talk?" "Why doesn't she talk?" and, if I'm the one on the receiving end of the question, I'll answer something like: "she can talk, but she talks a lot less than some of the other kids. But she understands everything you are saying." If, however, the question is addressed to some other adult, I don't have control over the situation, and that leaves me feeling defensive (and often depressed). This happened a while back with our neighbor's kid: she asked her mom this question, and followed it up with: "Is she a baby?" The mother--who knows our daughter since birth and who used to be our friend before this incident--said nothing. I had to step in and educate. I hate that part of the process of being a special needs mom and suspect I always will.

    Anyway, thanks for posting this---

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  48. Ellen -- looks like such an inspiring video!! :)

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  49. Ellen
    Yay for the insights this movie gives.

    The staring has never worried me, I always use it as a teaching opportunity, for people to get to know Mac, to say hi. The reason we "pimp his ride" (wheelchair) is to create conversation starters.

    I am a big believer in the 'sh*t happens' concepts in life, it's just that I am turning my 'sh*t sandwich' into the most amazing gourmet feast imaginable.

    Now, if I could just remove some of the red tape to allow Mac to live his best life without hinderance we'd be cruisin'. Mac's biggest disability is society, the lack of access and understanding so we might as well change it little by little.

    Gina

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  50. I would totally buy that "What to Expect" book if it would exist.

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  51. Wow, I'd love to see this movie. It would be great from two angles. One, as a person with a disability who totally experiences the staring. And two, as a special education teacher, I could share this with other teachers in my building. It's funny. I hate the staring and always strive to educate people about it when it happens to me. BUT I feel totally defensive when it happens to the kids. Anyway, I'd LOVE to have a copy of this! Thank you for offering it!
    ~Marianne
    marmaid91@hotmail.com

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  52. this would be an inspireing project to do with different age groups. I would love to see this movie I hope I get picked

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  53. Interesting post Ellen. Nice to come away from an event with such a solid shift.

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  54. I like to think that I have always been rather open about Skyler's condition. When people stare or comment on his eyes I like to tell them why they are crossed, I like to make people think, and honestly (I don't mean this in a bad way) I like to make them a little bit uncomfortable. Because it's kind of like hey you were staring at him or pointing or whatever and now you know he is blind, he's a real person with real feelings, he just happens to be blind. And most people feel like jerks when they find out he is blind. And then they feel sorry for him, and I like to take a moment to make them realize that there is nothing to be sorry for. If I can open up one or two people's eyes about the myth that disabled people need pity then I am happy. What we all need is respect.

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  55. Sounds fabulous. I love your description of the guidebook--at six months you stop crying every day.

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  56. Ellen,
    This is such a good post. After my girls were born, I threw away my What to Expect books, but boy would I love the Special Needs version.

    Would love to see the film!
    Billie

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  57. You are so honest and inspiring! I just heard about another book "A different dream for my child" that I am ordering. I would love to see this movie too. I will keep my eye out for it,

    Thanks for sharing.

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  58. That looks amazing. I was thinking about getting Mal a camera for his birthday. That just sealed the deal and don't worry - I am still defensive when people stare at Mal and I still get nervous when I can't cover Ivy's port access up properly and people ask questions.

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  59. I am wowed as well. This looks like an amazing movie! There is also a new movie coming out with Claire Danes playing a girl with autism that I'm excited about.

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  60. Ellen, I think you should write the What to Expect Book. I know you must want to just kill anyone who is staring at Max, but just know that anyone who spends even a few minutes with Max quickly gets past his differences and realizes how special and loving he is. Maybe that's what some people are seeing when they are staring - maybe they are marveling at his courage and his perseverance. That's what I see when I look at Max.

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  61. Pick me, pick me. I need help. So far my daughter doesn't really stand out in a crowd, as she is a beautiful girl and it is not unexpected to carry an 18 month old around, but what will happen in the future? Will I be punching strangers in stores? I caught my stepson mocking her mode of butt scooting and nearly lost my mind. Help. Help.

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  62. This movie looks amazing! I am definitely on the defensive side still. I really need to turn that around and learn to engage people instead. Your posts always get me thinking!

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  63. Ellen-
    This is Courtney Bent, producer and project founder for the film 'Shooting Beauty' which you wrote about in this blog. Thank you SO much for your beautiful and honest words. They brought tears to my eyes.

    For anyone that's interested,
    DVDs of 'Shooting Beauty' can be purchased and screenings can be arranged by contacting us directly at shootingbeauty2009@gmail.com

    Our website:
    http://www.EveryoneDeservesaShot.com

    This is a link to a video showing audience reactions to the film.
    http://vimeo.com/7147729

    And thank you, Ellen, for everything you're doing with this blog. You've created an incredible place for parents of children with disabilities to share their experiences, fears, triumphs. A place that I know a lot of my friends will benefit from.

    Best wishes-
    Courtney Bent

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  64. I saw Shooting Beauty as part of Reelabilities too, and I have a feeling you must have been there when I was - were you there the Saturday night at the JCC in Manhattan? By the way, I've been reading bits of your blog for awhile now and I love it!

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  65. Hey! Yes, I was there that same night. Glad you are enjoying the blog.

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  66. Hello,
    I like your blog. You might be interested in a film festival I am planning on March 27 for Vinfen. It's called Moving Images and its a film festival for people living with psychiatric and developmental disabilities. We will be screening Shooting Beauty, The Soloist and Joe Pantoliano's film No Kidding, Me Too!. Joe will also be attending. www.vinfen.org.

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Thanks for sharing!