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Thread: "Speechless:" Prime Time TV Show ~ Teen with CP and His Family

  1. #21
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    Rose and Funnylegs, I've greatly enjoyed reading your take on this show! I have not yet seen any of the episodes. Honestly the adds turned me off. A lot of what you both said is what I feared about the show. I was completely turned off by the mom character, she appeared to be crass, loud and rude. Through our years with Kathleen I know there have been a few who thought I was a real "B". BUT I have always been considerate, reasonable, and thoughtful of others. I've always followed the correct channels when needed something changed. Watching this mom made me sad that people will think they're correct in assuming moms of children with disabilities are rude loud and over the top with demands. Also from what I've seen and read from your reviews She and the family seem to be so focused on the disabled child that the "idea of family" is "lost" the normalcy in the family sounds like it's lost. Our family was a "family" first and was a family with a child with special needs second. More normal than not. Sure it affected our older children and sometimes they were put second but to me that's "normal" All siblings have greater needs at different times. Sometimes they came first too if they needed it. I agree with Rose Life goes on did it right!
    Rose and funnylegs you could honestly do it right!!!!
    Mary Grace

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    ((((((funnylegs4)))))) ~

    Exploring the relationships between the family members should be a main focus, and I think they are trying, but it's falling short. Time is a factor. It's difficult to address complex issues in less than a half hour. Most 1/2 hour shows have only about 20 minutes of actual show time to allow for commercials.

    It bothers me that they are slobs too. Even when I was a single working mom, taking care of my boys on my own, my house was always clean and tidy, and I pulled the weeds and used an edger to trim our front yard (didn't have a mower), once I had a yard, thanks to friends who volunteered to plant it. And when I lost my job and became a stay at home Mom, I painted every square inch of our home's interior and installed tile floors in the entry, bathrooms and kitchen. So, there is no reason why this family can't take care of their home and property.

    I wish that I had time to collaborate with you on a project! Alas and alack ~ time is not on my side.

    However, I did develop and fully flesh out a new character for WKRP (my favorite) back in the old days. I had a season's worth of script ideas, all written with detail and scenes with every character on the show. When I was ready to ship it off to the producers of WKRP, the show was cancelled! I was devastated!

    Of course, it was an unsolicited manuscript, and I didn't have an agent. So, it would have never been seen. But I had hope, a marketing background, and I completely believed in my character.

    You keep doing what you're doing, and you'll break through that ceiling!

    Love & Light,

    Rose
    Mom to Jon, 47, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

  3. #23
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    ((((((Mary Grace)))))) ~

    Your assessment of Mom in "Speechless" is accurate. That you caught all of that from just seeing promos for the show speaks volumes. Initially, I could relate to Mom, because I had to be quite assertive through the years to get what my boys needed. I wasn't rude, but I was sometimes loud, and often dramatic. Generally, I was fighting for newly minted rights for my children, where there were no precedents, in fair hearings against the school board or the state. And every IEP was a challenge, particularly at Jon's school, where all of the authorities were men.

    Example:

    Jon's school didn't want to meet their legal requirement to provide a bus aide to assist Jon with stepping onto and off of the bus. So they put him in a run down wheelchair from school to ride on the bus. I protested. I insisted that they meet their legal requirement to provide Jon with a one on one aide.

    At Jon's IEP, a panel of 5 men (superintendent of special ed, principal, teacher, Regional Center Advocate, and district lawyer) told me that I had to buy Jon a wheelchair. I laughed. Jon didn't qualify for CCS assistance in the purchase of a chair, and I didn't have $5k lying around to buy one for him.

    So these 5 men told me to ask my ex-husband to pay for Jon's chair. I laughed again. Then I scowled at them. "I can't get him to pay his child support. And you want me to ask him to fork over five thousand dollars for a wheelchair?"

    There was a phone (rotary dial) on the conference table. I picked it up and started dialing my ex-husband's office number. "I'm calling him right now. Which one of you is going to tell him that he has to buy Jon a wheelchair? Come on! Which one of you is going to convince him to do that? I want to witness this miracle right now! Come on! Who's going to talk to my ex-husband?"

    They all stared at me, their jaws dropping. I hung up the phone. "I thought so. Cowards. Easy for you to sit there and tell me to go begging, but you don't want to talk to him! You get Jon an aide! This meeting is over!"

    I stormed out. I didn't prevail. Jon's mobility began to deteriorate, because he lost motivation, and he didn't have PT or assistance at school. I found a way through Medicaid to get him a wheelchair.

    That's one of those times, when I was likely perceived as a "B." And there were many of those times, unfortunately, with Michael and Jonathan, because it was the 70s, and it was all brand new, with no supports in place. I quoted laws chapter and verse to "authorities," who acted like it was the first time they'd heard them.

    Both of my boys attended segregated schools. Inclusion was a weekly field trip to the local high school to hang out with the regular ed kids at lunch. It was an insulting, degrading joke: "Community Based Instruction."

    But this is 2016, and I have to believe that progress has been made in mainstreaming and in services provided to meet the legal requirements of special education IEPs. I know IEPs are still dreaded and the annual "tale of woe," as Lisa O calls recertification of benefits is awful, but I hope that we've progressed beyond what my boys and I experienced.

    And thank you, Mary Grace, for sharing that your family was a family first, and that you love all of your children and know how to prioritize their needs so that they each receive equal attention. It's a balancing act, as we all know. And you've done it so beautifully.

    We never missed an episode of "Life Goes On," which aired on Sundays, if I recall correctly. My boys and I loved that show, and we were very sad, when it was cancelled. I think it was an hour show, which allowed for more development and situations. It was gently and tenderly written, directed and performed.

    With all of this said, I am committed to watching the full season of "Speechless," because I can't support or criticize it, if I don't watch it. The writer(s) and producer(s) of "Speechless" should read this thread to get a clue about which direction the show needs to follow.

    Mom needs to tone down. The family needs to plant their roots in their new home, and make it livable. Stereotyping needs to end. Replace chaos with some sense of normalcy. Just a sense of it would be refreshing. And more realistic. More scenes, where the entire family is together doing something, anything.

    I've blathered on and on ... I apologize. I just feel so strongly about this show, after such a long time without any kind of acknowledgement on Prime Time (or most anywhere) that people with disabilities exist, let alone have meaningful lives with their families, that I'm a tad overzealous.

    Love & Light,

    Rose
    Mom to Jon, 47, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

  4. #24
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    Rose Thank you for sharing... I agree I wanted to be able to relate to mom but there's a difference between assertive and rude. She just seemed rude and to be looking for a reaction. I love your story about the meeting and calling your ex. That is priceless! You think quick and it was a perfect response. I've had some really difficult bumps along the way especially when Kathleen was in Kindergarten. I remember "holding a team hostage" One afternoon LOL. I called a IEP review meeting and it was after school. I refused to end the meeting until we made the necessary changes to Kathleen's IEP. Of course they all wanted to leave so we did come to an agreement of at least a "trial cahnge" which was putting her in all day inclusion with a lush in special ed. AND a full time TA. They had her in a self contained room with a shared TA. At the time she was in a wheelchair full time wore a pull up and could not walk or use her left hand. I did finally have to go up the chain of command to get it to stick but that's the way things are done. Through the proper channels and in writing. This was not the last time I had to go above the building principal. Once they realized I would go above their heads they they were pretty good about letting me lead the team LOL. Not only did I have some call me a "B" (behind my back of course) I also made a lot of friend and met a lot of wonderful caring teachers and therapists along the way. The ones who really cared and wanted to do best for Kathleen saw I was only acting in her best interest. Some of these people have become family friends for life. This is the reality! Yes it doesn't always come easy and you have to be assertive and ask for what's needed BUT It's a colaborative effert and it does take a team working together. Also Why do they have to live like slobs??? I don't get that angle! I may have a little clutter at times but I do keep a very clean house. If she expects the outside world to be perfect and accommodate her son what's she doing to make his own home an acceptable clean place to live?
    Rose yes it's 2016 and because of parents like you before us things have changed and most schools are getting better at inclusion. BUT I do see that a parent still has to advocate for it most of the time. They still cut corners and try to save money and if a parent doesn't speak up they get away with it. I have enjoyed reading the comments here and I may try to watch the show. I can feel your passion on this and that's a good thing.

  5. #25
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    ((((((Mary Grace)))))) ~

    You held an IEP Team hostage?! Awesome!!! I love how you handled that situation. I agreed to compromises too, while still pursuing exactly what my boys needed, deserved, and were legally entitled to receive. Then you went above their heads, and I did that too.

    And I think that what you've done, and what I've done, and what every parent we've known here on CN has done, is the true reality of having a child with a disabling condition. In some ways, this is how Maya (the "Speechless" Mom) is portrayed, except that she is just so abrasive and unyielding that she is not reflecting us.

    Something else that is bothersome to me is how this family has been shopping around for a school to meet JJ's needs. This is 2016, and the accommodations for special needs students within each school district (in our state, where this show takes place) are available on line. And before I would move home and hearth to another school district and enroll my child in a school, I would meet with the teacher and tour the school.

    When Jon and Michael graduated public school, I visited 15 different adult day programs, with their Regional Center case manager, and wrote detailed criticisms of each program to present to a board at mediation meetings prior to the Fair Hearing I filed. These 15 programs were horrible, disgusting, filthy, cramped, poorly lit, with unqualified and untrained instructors/aides.

    I ended up serving on our advocacy board to start up a new adult day program, while working toward shutting down the other 15 facilities. In the end, the new adult program, which Jon and Michael attended for 8 months, was a fraud. We had been duped by the "owners." So, then we had to shut it down.

    While it may seem that I'm straying from the topic ~ the point is that meeting our children's needs is a life long process. It doesn't end when they graduate from high school. So we have to keep advocating and preparing and finding solutions long after public education. And at the rate Maya is going on this show, I don't know if she's going to make it.

    There are so many other ways she could have handled the bonfire situation. But she ended up tying JJ to a goal post and pranking his peers, while blaming it on the opposing school's football team. As funnylegs says, this is a gag. But it's not only not funny, it is damaging.

    And the whole thing with their overgrown front yard, and their run down home just screams to me "We don't fit in anywhere! And we like it that way! So get used to it!" Just another thing that sets us apart from others, makes us different, makes us "weird." I don't want viewers, who are clueless about families with a member who has a disability, stereotyping that we're all this way. Looking askance, when they see a person in a wheelchair, or with an awkward gait, or anything less than perfect. I've seen that look all of my adult life. And it needs to be corrected, dispelled, not promulgated by a sit com.

    You can watch the episodes on ABC for free, one week after the shows have aired. I'm going to keep watching it, since, as I said, I can't criticize or evaluate it, if I don't watch it. I just hope that it improves.

    Thank you for sharing your experiences, Mary Grace. We're Sister "B's"!!

    Love & Light,

    Rose
    Mom to Jon, 47, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

  6. #26
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    SPOILERS! So I finally caught an episode on TV for a change instead of online LOL. My thoughts on episode 4 “INS-inspiration” (sorry if that is the wrong spelling) So I like the development on the 2 able bodied siblings and the mother in this one because it shows an actual sibling dynamic and shows the mother trying to loosen up when she realizes she is hyper focused on the disabled kid and how that focus effects the able bodied kids. I also like that we saw JJ clearly communicating his anger at Kenneth’s behavior. What I didn’t like was that this episode makes Kenneth seem dumb even though they did try to give a reason for his behavior with a remark which seemed like it was a mix of “inspiration P#rn” (as some in the disability community call it,) and racist in delivery,though I forget the exact remark. The other thing I didn’t like was the driving scene which while amusing would not be accurate as far as I know because wheelchair using people with CP generally need hand controls like myself to pull that off. I could be wrong through. I certainly thought episode 4 was better than episode 3. My non disabled relative however thought the gags were really stupid and lost interest very fast. My relative was very bored.

    Mary Grace, Thanks for sharing. I’m glad you met nice people along the way. My family also had IEP issues but our problem was that the school system saw me as a dollar sign and I was given accommodations that I did NOT actually need or want rather than fighting for what was not provided. In episode 4 the mom is loosening up or trying to loosen up for the sake of the able bodied kids a bit so maybe it will get better.

    Rose, I am completely aware of the time limits and there are probably other limits based on it being a mainstream show. I just wish they would do what some of what the past sitcoms of 20 minute length used to do including the old Disney Channel ones from the really early 2000s where they had siblings fighting, people dating, different cultures clashing etc. “Speechless” seems to just jump straight into the punchline without a more natural set up. Episode 4 did the sibling fighting thing a little bit though so that is hopeful. I’m so sorry that wheelchair incident made Jon less mobile! That’s awful! I had an aide in grade school so maybe your complaints helped me years later. Good job sticking up for him. As to your script ideas, have you thought about posting your scripts on a site like fanfiction.net or deviantart.com/ so at least fans could see the writings??
    Last edited by funnylegs4; 10-12-2016 at 05:59 PM.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

  7. #27
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    ((((((Hugs to All)))))) ~

    I didn't get to watch Episode 4 really. Jon's been battling insomnia again, and he was asleep, as was Jim. So, I had the TV on without sound, which is pretty meaningless. I can't handle watching it on Youtube, since the sound is poor and the screen is too small, with annoying graphics in the background.

    Thanks for your review, funnylegs4. I'm glad that you felt there was an improvement, although it sounds like it is still lacking in many respects and cramming storylines into the episodes.

    So Mom and Dad bond with their two non-disabled children by going to a paintball place (whatever they're called)? My problem, and it's my problem, because I am a pacifist and support strong gun laws, with this was that it was inappropriate given the rampant violence in our country (world) to glorify this sport for a family. Those paintball weapons look like high powered rifles, and I cringed when the parents and kids posed with their rifles up ready to shoot. Why is this fun, pretending like you're killing people? I don't get it. But again, that's me.

    Also, clearly, JJ can't participate in a paintball "adventure," so that was quite exclusionary. I know that JJ went to a Dodgers' game with Kenneth, but that doesn't mitigate the fact that the parents and siblings chose to do something together that categorically excluded JJ. It felt to me like they were saying, "Let's go do something together that JJ can't do!"

    I don't think that my opinion will change on either of these two issues, after I've viewed the episode with sound.

    That will have to wait until next Weds, when the video will be available for free/without signing into the internet provider's website (I still can't get in).

    Funnylegs4, my scripts were for WKRP in Cincinnati, which aired from 1978 to 1982, so they are no longer relevant. Plus, they are in a box somewhere in the garage, and I don't have the energy to find them.

    https://en.wikipedia.org/wiki/WKRP_in_Cincinnati

    So, I'll weigh in with my thoughts about Episode 4 next week. I really want to feel positively about this show, but I don't.

    Love & Light,

    Rose
    Mom to Jon, 47, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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  9. #28
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    Here's a review of episode 4. https://toniasays.blogspot.com/2016/...x04-i-n-s.html

    Rose, If you listen to the whole episode you will see that the family repeatedly mentions that they want JJ there but want to do something "without worrying about accessible space" etc. It seemed like a moment where they just needed a break from care taking but it does send mixed messages and may make the disabled feel devalued. Paintballs are dangerous so I don't really like them in general but I have seen dwarfs play paintball on "Little People Big World" so it's not an entirely exclusionary game despite it being presented as one.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

  10. #29
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    ((((((funnylegs4)))))) ~

    Thank you for linking to Tonia's review. Her synopsis and analysis are very helpful and insightful.

    The family wants JJ with them, but they also want to do something, where they don't have to worry about accessibility. To me that is contradictory. And it's selfish. They did exclude JJ by choosing an activity, which he couldn't access.

    Why didn't they choose to have a day with JJ doing what he wanted to do? Instead they handed JJ off to Kenneth, who made a mess of the day, focusing on the "materialistic benefits" of JJ's condition. And that was wrong, too!

    We'd always get to go to the front of the line at the fair, or Disneyland, because our sons were in wheelchairs. Those lines were very long, and we sure got some looks from the folks standing in the heat, watching us sail on by to the front. They didn't understand about seizures, or about the effect of heat and sun on our boys, or that w/c seating required us to enter first, simply due to logistics of the attraction/venue. They also didn't know that attendants on these attractions have little patience for persons with disabilities, and how often we were harassed, because we took too long to get on/off the ride.

    How old is JJ? 17? And the family is already tired of accommodating his needs? They want to have fun without having to think about JJ's needs?

    Jim and I haven't had an "evening out," or a "date night," or even a trip to the store together since 1997. We couldn't find trustworthy respite care nurses for our sons.

    As their abilities and health declined, we decided that we couldn't go out on our own, when they couldn't go out and do things with us any longer. I couldn't say to them, "We're going out to have a good time now." Leaving them behind, unable to go out and have a good time. We felt guilty.

    And then the reason became that we didn't want to leave them, because we don't know how long they will be with us. We are never too far from our home, in case there is an emergency. Everything we do is local.

    Why couldn't JJ's parents and siblings go to the Dodgers' game with him? That's a fun family outing (I know for a fact from my childhood/adolescence).

    Instead they went paintballing. Holding their paintball rifles in the air, back to back, scowling. Were they in a Mission Impossible movie? Were they imitating soldiers in Iraq? Were they pretending to be a SWAT team? What is the point of this "sport?" Pretending to kill people ~ how is that a good thing?

    That part just turned me off completely. There was no need for that to be their choice, and the image of those children holding those rifles was disturbing to me.

    I'm not sure which audience "Speechless" is targeting, but I don't think I'm in it. But I'll muddle through this season, and at the end of it, perhaps all of us should write letters to its producers, writers, creator, with our critiques. Maybe then they will turn out a better second season, which reflects us, the ones, who deserve respect and should be their audience.

    Love & Light,

    Rose
    Mom to Jon, 47, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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    Quote Originally Posted by Earth Mother 2 Angels View Post
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    ((((((funnylegs4)))))) ~

    Thank you for linking to Tonia's review. Her synopsis and analysis are very helpful and insightful.

    The family wants JJ with them, but they also want to do something, where they don't have to worry about accessibility. To me that is contradictory. And it's selfish. They did exclude JJ by choosing an activity, which he couldn't access.

    Why didn't they choose to have a day with JJ doing what he wanted to do? Instead they handed JJ off to Kenneth, who made a mess of the day, focusing on the "materialistic benefits" of JJ's condition. And that was wrong, too!

    We'd always get to go to the front of the line at the fair, or Disneyland, because our sons were in wheelchairs. Those lines were very long, and we sure got some looks from the folks standing in the heat, watching us sail on by to the front. They didn't understand about seizures, or about the effect of heat and sun on our boys, or that w/c seating required us to enter first, simply due to logistics of the attraction/venue. They also didn't know that attendants on these attractions have little patience for persons with disabilities, and how often we were harassed, because we took too long to get on/off the ride.

    How old is JJ? 17? And the family is already tired of accommodating his needs? They want to have fun without having to think about JJ's needs?

    Jim and I haven't had an "evening out," or a "date night," or even a trip to the store together since 1997. We couldn't find trustworthy respite care nurses for our sons.

    As their abilities and health declined, we decided that we couldn't go out on our own, when they couldn't go out and do things with us any longer. I couldn't say to them, "We're going out to have a good time now." Leaving them behind, unable to go out and have a good time. We felt guilty.

    And then the reason became that we didn't want to leave them, because we don't know how long they will be with us. We are never too far from our home, in case there is an emergency. Everything we do is local.

    Why couldn't JJ's parents and siblings go to the Dodgers' game with him? That's a fun family outing (I know for a fact from my childhood/adolescence).

    Instead they went paintballing. Holding their paintball rifles in the air, back to back, scowling. Were they in a Mission Impossible movie? Were they imitating soldiers in Iraq? Were they pretending to be a SWAT team? What is the point of this "sport?" Pretending to kill people ~ how is that a good thing?

    That part just turned me off completely. There was no need for that to be their choice, and the image of those children holding those rifles was disturbing to me.

    I'm not sure which audience "Speechless" is targeting, but I don't think I'm in it. But I'll muddle through this season, and at the end of it, perhaps all of us should write letters to its producers, writers, creator, with our critiques. Maybe then they will turn out a better second season, which reflects us, the ones, who deserve respect and should be their audience.

    Love & Light,

    Rose
    Hi Rose,you're welcome and thanks for your input. I agree with a lot of what you are saying. I do not like paintballing or the family’s behavior. However what JJ’s family is doing is something I have seen again and again. I worked with disabled children for a few years in a special program. I absolutely loved these children as if they were my own. Through this job I also saw what the parents went through. The parents were EXHAUSTED from fighting accessibility battles for their children and from dealing with the complex medical,physical, and mental needs for each child. The children were only 6-8 years old in age. The program allowed the parents a few hours for themselves and even after those few hours I got physically and mentally tired, not because I loved these children any less but because it is hard work. I also think I got a bit of neuro fatique from my own disability while working with them so if I were to be blessed with a disabled child of my own I would certainly learn new ways to save my energy and also find activities for my child that they enjoyed which also allowed for a bit of “me time”. On the darker end of this idea of “caretaker burnout” there is a play I saw called “A Nervous Smile” where the parents were so selfish they abandoned their daughter altogether. I wrote about the play a bit in the old achieves here http://www.braintalkcommunities.org/...ad.php?t=55147 and here http://www.braintalkcommunities.org/...ad.php?t=57109 The play was written by a disabled playwright and is extremely well written so I recommend checking it out if you don’t mind the intensity. Maybe people are just more selfish these days. I don’t like those parts of the episode, I'm not saying they are "right" but I think they do reflect some reality. In regards to JJ taking his family to the ballgame, I would have written it where the family goes together and then some misadventure happens that shows the family dynamic. At the same time since JJ is around 15-17 I would imagine he is looking for opportunities to show how independent he is by doing activities himself. My non verbal friend said they would often take their aid instead of their family on outings because they felt taking the aid made them look more “adult” than taking family. In a certain part of the disability community there is a lot of pressure on disabled from slightly older disabled people about getting aids instead of being with family because family holds them back. So again there is some reality to the story elements but its so poorly delivered none of it gets across. I would love to get in touch with the show writers. You have done a fantastic job with your boys!! My family is great also and never excluded me.
    Last edited by funnylegs4; 10-16-2016 at 12:23 PM.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

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