Josh has varied tastes.... On any given day, you'll find him with one of these movies on, or watching something from his wide collection of DVDs, and usually listening to his iPod at the same time.
0 Comments
In honor of Down syndrome Awareness month, allow me to further introduce Josh. I've talked many times about his love of music, costumes, and all things "Rock Star," but what else is there to know about Josh? Plenty! While I was in graduate school in Toronto, Josh and I took a trip downtown. We rode the bus, and saw some sights, and even had dinner at the Hard Rock Cafe (one of Josh's favorite places. Okay, mine too!) The main reason we were there was to go to a Blue Jays game. We went to many Orioles games in Maryland (GO Cal Ripken!) but we hadn't seen a game in Canada. The biggest surprise for Josh though was that before the game, three WWE stars were going to be there: Bobby "The Brain" Heenan, "Mean" Gene Okerlund, AND "Rowdy" Roddy Piper! He was beside himself. Our lives revolve around what night Raw, Smack Down, or whatever version of WWE is currently available. When he takes his medicine in the morning, it's always the same routine. He tells me what day it is, and whether or not wrestling is on that night. He can tell you the names of his current favorite, (past honors have gone to The Undertaker, and Jim Morrison) and all the current contenders, along with their story line, and most importantly, what they wear, their hairstyle, and who they are dating/married to. A poster of the women (WWE Divas) has been on his wall for years. Every Christmas, what he wants is "the new game." WWE has put out a video game for the past several years and he waits for the new one each year. BUT! He doesn't actually play the game - he watches it run the demo, over, and over, and over. When we lived in Syracuse, NY, he attended a few courses at the community college that were designed for adults with developmental disabilities. One of them was all about the WWE. Finally, he had someone to talk to about all the "people" in his life (and there were quite a few students in the class who had Down syndrome). It was great! Back to the baseball game... The night of the game, he was so excited. I didn't know what to expect from the stadium, but I should have guessed that we were going to have problems at dinner. The Hard Rock is built inside the stadium and there's a beautiful view of the field from some of the tables. We were early and it wasn't very crowded, so the waitress gave us a perfect seat. Within a few minutes I noticed that Josh was fidgeting and looked very uncomfortable. The view, and the height, was making him nervous. The waitress moved us away from the window, and he was back to his normal self, loving all the memorabilia on the walls and taking his sweet time eating his fries. (Eating is another thing that takes Josh FOREVER to do. He's very meticulous and savors every bite. Don't plan on going out to eat with him and doing anything afterward unless you allow PLENTY of time.) He told me that the seat was better, and he'd just "ignore it" by looking the other way.
Once we finished, we made our way to the bleachers. To say our seats were in the "nose bleed" section was an understatement. We started to climb the stairs and I noticed that not only was he gripping the rails extremely tightly, but his legs were actually shaking. He's a trouper, and rather than miss his chance to see the wrestlers he kept trying to get there. It didn't take long for me to realize this wasn't going to work. I'm usually a very quiet person (in public), one of those who will look around for hours before I actually force myself to ask directions, but in this case, I had no choice. I got Josh out of the stands and found an usher. As Josh tried to recover his composure, I asked the usher if there was somewhere we could watch the pre-game events because Josh obviously couldn't sit in our assigned seats. The usher was very understanding and led us to some much lower seats where we could watch the whole game. (Yes, I felt guilty, like I had used the "disability card," but he was so looking forward to seeing them and physically unable to reach our assigned seats...) All in all, it was a great outing, but the first time I realized that he was genuinely afraid of heights. I don't think he realized it before then either. Ever since, if you ask him about doing something that involves heights, he'll tell you NO! in no uncertain terms. So that's my Josh story for today - Thursday - and yes, it's a wrestlin' night!
What's a Mom to do? So, I figured, maybe he'll change his mind in the morning... Not so much. I went to ask him to start getting ready (the man is a diva in his own right who takes at least 2 hours from start to finish to go ANYWHERE). He looked at me and back at the TV. Okay, I think, I'll give him a minute to let that sink in. I went about my business, checking in on social media and the news of the morning. A half-hour later, I went back to see if he had made any progress. He was asleep with the blanket over his head. Well, that's that. Choose your battles A wise woman once told me that I needed to learn to "choose my battles." Parenting, even at this stage, is filled with choices. I struggled with the idea of his autonomy, he's an adult and gets to have a say in where he goes and when, vs. his health care, he will need to get his maintenance prescriptions refilled sometime soon. Ultimately, I had to make a choice. Was this a battle I was willing to fight with him? Or had he somehow already "won?" The more I thought about it, the more I realized the battle wasn't with him. It was with myself. Which decision did I think would make me feel like a better Mom? I always want to do what's best for him. In this case, do I reinforce the "because I said so" routine because it's "best for him," or do I work around his schedule? Is it worth trying to cajole and convince him to go just so I don't have to reschedule his appointment? Then there is the doctor's office to consider. Should they be inconvenienced because Josh is "in a mood?" (Ok, the countless hours in the waiting room negated that point.) Ultimately, I decided it was not worth rousing him and making us both more anxious and aggravated. I called to reschedule his appointment and the nurse says "Tell him I want him to sing to me when he comes in." I said, "See, that's the thing." I relayed his "don't wanna hear it" statement and she said, "And you knew you better call to reschedule." LOL! Little does she know the drama that played out in my head. To her, it was obvious that he'd have to do it another day when he'd want to sing to her. Mountains out of Molehills I guess the point of my rambling today is to tell other parents a) you're not alone, and b) we can get so caught up in doing what's "right" that we forget to consider what they want. No, I won't allow him to go without his thyroid and cholesterol medicine. But today is just one of those days. We all have them.
My three simple take-aways from today’s webinar on training law enforcement and first responders about intellectual disabilities:
The hour and a half session started with introductions from NDSS, NDSC, and DSAIA. Next up was Patti (Ethan's Mom). Pictures of Ethan were presented in a slide show as she talked about his life and goals for the future. She explained that some days are worse than others, but that she and her family were advocates for change when Ethan was alive, and they will continue on that path now that he is gone. She also shared a valuable insight that she learned as Ethan’s mother - the best training happens when relationships are formed. The bulk of the presentation was divided between David Whalen of Niagara University in New York and Sgt. A.D. Paul of the Plano Texas Police Department. Both men presented helpful information for anyone interested in how the training process is taking place and how to start new programs. A few highlights that I found interesting:
A podcast of the seminar will be available on the NDSS website later today or tomorrow. There will also be a link to the slides that were used. For more information on the New York training program that exists, visit their website: www.fr-dat.com Sgt. Plano’s slides regarding CIT (Crisis Intervention Training) and things to consider when initiating a training program will be part of the tools available through NDSS. My thoughts, for what they're worth:What I came away with from this section is a renewed sense that training for first responders IS important, but that it will certainly NOT be easy. There are so many factors to consider and the number of people involved is astonishing. Training will not be a quick fix. It will take time and a great deal of work for it to be designed and implemented in a way that actually helps shift attitudes. Luckily, we heard today that there is a model we can look to for help.
Another thought that resonated with me after listening to all the speakers is this: Police were not called the night Ethan went to that theater, mall security was. So, if we do manage to train every single “first responder” (which is a very tall order), we still have a lot of work to do in the general public. I’m going to have to choose not to dwell on this fact for today… We can only go at this one step at a time, but perhaps the training materials that are developed can be used in other sectors of the community as well. It will require a great deal of dedication to see that this idea takes hold in communities across the country. I for one was grateful today, as a parent, that there are people who have taken this seriously. I’m grateful to Patti for continuing to share her story and fight for something that will benefit us all. I’m grateful to the national organizations that are spearheading this effort and the local groups who will no doubt work diligently in their communities. And, I’m heartened to know that there are parents, like us, “in the trenches” who know the climate and the in’s and out’s of how to get this done. My last thought…. Ethan IS working with law enforcement and he’s one of the good guys. Now, let's get that investigation! I’m working on something I’m really excited about for October – National Down syndrome Awareness Month. Thanks to Gail Zahtz, I’ve discovered the radio blog. For anybody who isn’t familiar with the technology (I wasn’t until a few weeks ago), it’s set up like a phone call. The person being interviewed calls in and the conversation is presented live on-line so people can call in with questions. It’s also saved for people to listen to later. The only equipment you’ll need is a land-line telephone. You call in, and I handle the rest. I hope to schedule a series of interviews with parents / siblings / caregivers of adults who have Down syndrome. The interviews will be up to two hours long, and be casual conversations about us and our loved ones. I won’t have a specific list of questions. My goal is to talk about things like how advocacy has changed over the years, what our current life is like, what programs / services are available in your area, etc.
I know two hours sounds like a long time. If you can’t actually squeeze two consecutive hours out of your busy schedule, I understand. We can talk for as long as you like. If you’re anything like me, talking about your loved one comes easy, and the time will fly. If people are interested, I can also feature photos of you and your family and maybe an intro type piece to go with the interview. I was amazed at how much I learned from Gail’s week long program (4 interviews) about the #JusticeForEthan movement. With October just around the corner, what better way to promote “awareness” than by telling our stories? How much can we help each other by talking about our successes and failures so we can learn from each other? What can we do to help each other reach our goals for the future? I'm open to schedule one interview a day for the whole month – but it would depend on how many people are interested. If you’d be wiling to participate, send me a comment or email and I’ll try to answer any questions you might have beforehand. Scheduling will be on a first-come first-serve basis. You pick the day and time. Please share this invitation with anyone you know who might want to chat. I think this could be an opportunity for us to do something different and really meaningful for Down syndrome awareness! Let us not look back in anger, nor forward in fear, but around in awareness. James Thurber October is National Down Syndrome Awareness month. I've been thinking about what I want to do and how it applies to #JusticeForEthan. I think the quote above pretty much says it all. awareness : AwarenessThese days, I think most people "know" the term Down syndrome. That wasn't the case when Josh was born, at least not for me. I had no idea what the syndrome was or what it meant for my child. Most awareness campaigns these days focus on giving the public a better understanding of something they may recognize, but are not "informed" about. Our national groups have worked long and hard to change the public perception of Down syndrome. As a community of parents, we may not always agree on the methods used ("inspiration porn" or "charity walks"), but we should at least be grateful that times have changed - some. We no longer hear "institution" as the only acceptable outcome when a child is born. Unfortunately, there are still way too many people that think 1) the child should not be born at all, or 2) a child is a 'burden' that needs to be 'handled' by society. We shouldn't "look back in anger," but we should look back. People who have Down syndrome have made amazing strides in the past century. There have been a host of tremendous individuals who have done great things to make our lives better today. We shouldn't "look forward in fear," but we should be aware that there is much more work to be done. #JusticeForEthanTwo very important concepts come to mind when I think about how #JusticeForEthan applies to the bigger picture of Down syndrome Awareness. The Immediate IssueOur work here is far from over. Emma, with the help of some dedicated activists like the people at Change.org, has managed to make a lot more people 'aware' of what happened to her brother. Unfortunately, knowledge of the event does not bring understanding. There are still too many unanswered questions. In light of Ds Awareness month, I would suggest that one of the most important questions is how much disability played into the equation. Some would argue none. The amount of force used by the three deputies was sufficient to create a similar outcome with someone who did not have a 'label.' Some would argue that sensory and language issues present in anyone with a cognitive disability created a dangerous situation; one that could have been alleviated if the security guards would have listened to the health care worker. Some have even argued that the reaction of the deputies may have been biased based on what they expected Ethan to do (all people with Down syndrome are 'angels'). We do know that the guards were 'aware' that Ethan had Down syndrome. The health care provider gave them that information, even if they couldn't tell on their own. I would argue that the reaction, or lack of, from the public and mainstream media has been at least in part, influenced by the fact that Ethan had Down syndrome. So many other cases involving use of force by police have gotten national attention and outrage. In fact, a number of people responding to Emma's petition cite 'police brutality' as the reason they are concerned about this case. Yet, a concern about police action is not enough. Is that because the 'victim' is seen as less worthy? If you browse the comments on several articles you get the impression that there is at least a segment of the population that believes his death was his own fault, or that of his family, and that it doesn't really matter that much because he was a 'burden' to everyone. Which brings me to the lack of commitment from Governor O'Malley to order an independent investigation. If this had been any other victim, would he be so silent? We all know by now that the governor has his eyes on the White House. If this case was seen as anything but a 'disability issue' would he have avoided the cameras, or would he welcome any chance to be seen as the hero? Continuing the MarchA positive outcome of the #JusticeForEthan movement is the number of individual parents and activists who have taken up the cause and given it a voice. By writing and communicating, we've unveiled a deep desire for change. We've also discovered just how diverse our opinions are about what that change looks like and how to get it. As we get ready to acknowledge October as a month dedicated to awareness, it's my hope that we can find a way to come together. In my opinion, we need to continue working on getting an independent investigation, help shape the path of training, and come up with helpful solutions for families who struggle with safety issues. I also hope we can agree that something needs to be done about the cases that don't get the support and voice that Ethan's has. Over the past nine months, I have become more aware that civil rights violations against people who have Down syndrome are not uncommon. How many incidents go completely unreported? Social media gives us an opportunity to change that. We need to utilize the tools we have to create a reporting / tracking method so that parents know there is somewhere they can be heard. Look "Around in Awareness"
I've had trouble deciding if I wanted to write about the "revolutionary" training clip we saw recently on WUSA9. I think my problem was coming up with exactly what I wanted to say. Yes, I am and have been a proponent of training (done well). But I will admit after watching Debra Alfarone's latest piece, I thought to myself "Watch out! Here come the I told you so's." If this is an example of the current training, if this is 'what's out there,' then Houston, we have a problem. I admire those that have the courage to help us see why this training is problematic. One of the issues with this kind of training is that often people with the best of intentions can end up doing more damage than good. I'm sure the people involved in the Montgomery County training are all well-meaning individuals who only want to help. The problem with privilege is that if you don't live it, you don't get it.
Another problem I've been struggling with is my instinct as a mom to support others who have real issues keeping their kids safe. Josh is verbal now, but there was a time, not too long ago, when his lack of language frightened me. Could he tell me if someone at school hurt him? If he ran away (as he was known to do at school) would he be able to tell someone where he belonged? These are REAL and SCARY things to have to worry about. I don't want to criticize any parent who does whatever they see necessary to keep their child free from harm. That being said, I do think you have to really consider how to do it. What are the best practices out there? I can see how, in certain circumstances (crowded venues like, say an amusement park) a parent would be very frightened of the possibility that their child could get lost. Fear may convince that parent that a neon shirt asking strangers to "Call 911" is a viable option. However, as some have pointed out, by displaying a diagnosis on your loved one, you could also be inviting predators to pay more attention. Many disability advocates have criticized the practice of non-disabled actors pretending to be disabled. In the training clip, we see this being done as part of a 'role-play' exercise. It's a typical method used in many training courses. I'm guessing that the trainer involved does not see anything wrong with what she's doing. I understand why many feel that the person involved in the role-play should be a self-advocate, not an actor. (But that would take time and patience...) In my opinion, we need to keep in mind that there are real problems here, and we need real, helpful solutions that don't further stigmatize and humiliate our loved ones, or worse yet, put them in added danger. We need to work together to find a way to "fix" the problem. I share many of the concerns being expressed about the current training and the use of brightly colored clothes as a way of identifying someone who has a hidden / developmental disability for the sake of police protection. Now what we need to do is acknowledge the fact that these fears do exist and are very real issues for some families then find a better way and contribute to the solution. Any suggestions? Maybe there are better examples of training we should look at. Some have mentioned a less obvious way of providing information to first responders i.e. a "hand signal" or medical alert bracelet. I agree that we can not and should not REQUIRE anyone to use any type of identification. But, if parents think their child is in danger, shouldn't we allow them the freedom and support their decision? These are important questions and I look forward to learning more about how we can provide real tools to help keep people stay safe while maintaining the civil rights and human dignities that every person is entitled to. In a perfect world, none of this would be necessary. We're not there yet. The hunt for truth continues thanks to Debra Alfarone and WUSA9. She has said that she tries to contact Governor O'Malley and Sheriff Chuck Jenkins for comment every week, and they don't return her calls. Yesterday, we saw just how far O'Malley will go to avoid her cameras and her questions. Sheriff Chuck Jenkins also avoids her queries and refused to go on camera with her when she traveled to Frederick to see him. What exactly are they hiding from? To me, it says a great deal that they refuse to answer questions. Jenkins claims that the media is one-sided but how can they report the "other side" if the main participants refuse to speak? "I personally don't believe it's necessary," Jenkins said Friday. [April 12th] "I think there's enough said about the Saylor case. I think when it all comes out, the public will have a full view of what happened in the theater." Jenkins claims that an independent investigation is not necessary. So why won't he answer the basic questions about how Ethan's injuries occurred? Why won't he say whether his deputies that responded to the call knew Ethan? There are many questions that he could answer to tell "the other side" but he won't do it. All he'll say is that he stands by his officers and they "did nothing wrong." O'Malley's duck and coverIt's one thing to have the superior officer involved in the case not want to incriminate his employees. It's another for a political figure, one who hopes to run for President, to be seen as participating in a cover-up. It may be that there is nothing to hide. There may be no cover-up. Maybe we're all falling prey to a conspiracy theory mentality. BUT, when you go to great lengths to avoid the questions, it sends a message to those who are waiting to hear what you have to say. Silence is golden when you can't think of a good answer. Muhammad Ali It's my guess that O'Malley was hoping that creating the new Commission and choosing a genuine advocate (Tim Shriver) for the leader would silence the masses in regards to an independent investigation. Thankfully, Debra Alfarone and WUSA9 didn't fall for that. Neither have I. Neither has the Saylor family from what they've said in interviews. "There's no way we're giving up just because somebody said no." "I would never forgive myself if I gave up now." Emma Saylor Don't Fall For ItIf Emma doesn't want to give up, neither should we.
THANK YOU Debra for continuing the fight for truth! Governor O'Malley - You can run, but you can't hide forever, especially if you want people to vote for you. We may have started small, but we're determined, and we are growing in numbers every day. 340,000 is now 347,879. Our work is not done. Neither is yours! #JusticeForEthan Finally there is some news from the Governor's office. "Today, I signed an Executive Order to create a Commission, chaired by Dr. Timothy Shriver, Chairman & CEO of Special Olympics, to seek ways to ensure that nothing like this tragic loss of life ever happens again." Tim Shriver is an excellent choice! O'Malley took a bold step with his appointment and I'm grateful that Mr. Shriver accepted the position! If there's one thing I've learned over the past few months it's that you can't silence a true activist. I have a feeling Mr. Shriver will be a voice of reason in the political arena that Maryland (and Frederick County) needs.
While the commission is a great step, we can not let him think that it eliminates the need for an independent investigation. Training will help going forward, and we couldn't ask for a better chairman, BUT... there are still MANY questions that need to be answered before we can rest. #JusticeForEthan will only come when his family gets the answers they deserve. I’ve been thinking a lot lately about an individual’s responsibility to their community and how much we need or don’t need to worry about “representing” Down syndrome to the public. I wrote about how Josh is a unique character and how I sometimes fear his style may appear harmful to the overall image of people with Ds. I even created a poll asking for input. I only got three responses to the actual poll, but I got lots of feedback in other places, mostly from other parents who voiced Josh’s right to be himself regardless of how it looks to other people. It’s interesting to me how people from minority communities feel pressured to be representatives to the world. Isn’t that the point we’re trying to fight? Don’t we want people to be themselves and not expect others to categorize all people with a presumed label as similar? I’ve been struggling with this thought for days, but people of color have tried to voice this phenomenon for quite a while now. Is it only the people who do well that feel this pressure? Or is anyone within a particular group subject to criticism based on their image? What is most interesting to me is that the harshest criticism seems to come from within that person’s community. I understand the theory behind the critique. If we don’t change the way people think about a certain label, oppression continues. I just wonder, don’t we add to the oppression of an individual if we criticize how they choose to express themselves, whether that’s by choice of clothing, lifestyle, word choice, or what they write about in a personal blog / memoir. If, as noted in an article I found, when one person “behaves badly” we allow that to define a group, aren’t we contributing to the problem? Apparently, it doesn’t matter if a person commits a terrible crime, simply uses the wrong word, or tries to promote inclusion but gets some points out of line with what others want.
I’m just wondering if there isn’t a way to do it without making people feel bad about their efforts when they are genuinely trying to help or just want to tell their own story. Personally, I think we need to respect each voice, even when what they say or how they say it doesn’t fit in with our own agenda.
I don’t want to be a role model either. I just want to tell my story to whoever wants to listen. I’ll screw up… I don’t have a really good filter when it comes to things I feel passionate about. I’m sure I have, and will continue to upset people because my perspective is different. I do enjoy hearing other perspectives and sometimes those thoughts change the way I see a situation. But I can tell you, I respond better and listen more when it’s presented in a way that doesn’t feel like I’m being persecuted for the way I feel / think. Constructive critique is a good thing, but where is the line? Or does one even exist? Do we all have to be “role models,” even our kids? Do people who have a greater audience shoulder more responsibility than the rest of us? Or should we allow them the freedom to live genuinely without putting the weight of a whole community on them? What exactly is our duty to critique and how far does that go? Obviously I have a lot of questions about this issue and welcome all responses. I’ll tell you up front though, I for one believe in the adage, “You catch more flies with honey than you do vinegar.” |