ASA National Conference Recap (Day 2)
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The morning started out with the keynote address by President Obama staff. I was very enthused by the fact that Mr. Lee Grossman, president of ASA, wants to reframe perspective from just medical issues with Autism, but to a whole life, whole person approach. What did not leave me nearly as enthused was the actual keynotes. I was upset by the generalities with no real precision on what the plan is for those of us living with AS. With a mental health system that’s not equipped to handle us rampant throughout the US, housing issues, along with job issues. You’d think some more concrete plans were being laid. Instead, it just showed how ill-equipped this presidency is to help our population. I wish I could work, I really do, but as of now, I can’t and a lot of it has to do with poor social services plans.
I made my “escape” early from the keynotes, when they started asking questions. The poor acoustics plus the frigid air left me in utter pain. Luckily, earplugs handed out during the workshop the day before kept me in there for that long. I’m really glad that by Day 3 they had most of these acoustic issues worked out, but the air stayed frigid throughout the conference. Shortly after the key notes, I found my way to some comfy chairs. I received a tweet from Alex Plank, creator of Wrong Planet and keynote presenter of Day 4, saying to call him. He was doing interviews, but I sadly never got around to giving one. I also met Lindsey Nebeker, who has just opened up her blog Naked Brain Ink which talks about relationships for those on the Spectrum. Along with Jack Robison, John Elder Robison’s son, and Autism Talk TV representative, Alex, and Lindsey, I sat in the lobby and chatted as 4 Autistic people do. I think we may have looked odd to the ‘outsiders’ as one lady got up and walked away at the congregation started. Lindsey did a really awesome interview for Autism Talk TV with Alex. I was particularly amazed at her presentation as she looks quite suave.
Following the 3 hour discussion between the three of us, it was off to view panels I had highly anticipated for the month following up to the conference. First stop was with “Anxiety, Depression, Post-Traumatic Stress: The Effects of Bullying on Individuals with ASDs”. I knew going in that I was not their target audience. Having experienced Bullying and abuse from those in my life, I was very pleased with the way they presented it for teachers and therapists who had not thought about it. I think they did leave out a few things, such as bullying from siblings and parents. Things such as bullying from teachers, which my brother suffered, to where it’s difficult to come forward with the abuse. From other students, but not realizing it for years later. I suffered from this kind of bullying. Being naive and innocent, it does not help when you look back on your life. Ignorance is not bliss, and I think they made that pretty clear. Many of the strategies that I am doing with my therapist were the same that they gave example to. Cognitive Behavioral Therapy, which means so many things, is definitely the psychotherapy of choice that I will continue to use, and if ever needs be, I will have my boys do.
Unintentionally after that panel, I walked around the Exhibition Hall for 2.5 hrs. Like I said, unintentionally, it was however worthwhile. I made a lot of great contacts and got lots of information for pet projects that I’m contemplating. One company, gave me information on creating boundless and sensory playgrounds, which is something within the next few years I really want to do. I spoke with the Director of Programs of ASA for quite some time and some of her pet projects would be incredible for the adult community. I really hope that the rest of the board will some day hear those ideas and pick them up. I will not go in depth for obvious reasons that they are not even on the playing field yet.
Many of the companies that publish books were there. I really wanted to approach one, but did not. So I listened. I was very happy to see Bittersweet Farms there. They gave me information as well. They are hoping to expand their style of adult care across the nation. I think this would be wonderful as it seems like the type of place that my oldest could really flourish. I will be speaking with some local people about that. If you happen to be in the Dallas area and would like to understand more, please contact me.
That evening, while at the Exhibit Hall Opening Reception, I kinda, sorta, bumped into (not physically) Lisa Jo Rudy who has just released a book Get Out, Explore, and Have Fun!: How Families of Children With Autism or Asperger Syndrome Can Get the Most Out of Community Activities
That was the end of Day 2. And while it wasn’t filled with many panels, I was very happy with how the day progressed. I will be wrapping up my post for Day 3 within the next few days. I hope you all can learn a little bit more.
Melody @ July 21, 2010
ASA National Conference Recap (Day 1)
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Making a Name for Myself: Developing Individual Self-Advocacy and Leadership Skills
Ms. Zosia Zaks was unable to present at the conference, for undisclosed reasons. As a result, Dena Gassner presented the morning portion of the workshop. You may not be aware, but you may have seen Mrs. Gassner if you’ve watched any PSAs put out by the Dan Marino Foundation and ASAN. She was a lovely woman who had a lot to share about learning yourself so that you can effectively navigate and advocate for yourself.
This was not that unfamiliar with myself, but I could tell a lot of “new” Aspies had not thought of this before. As a result, a lot of people shared about their personal experiences when it comes to social inadequacies and sensory issues. This discussion was ended with a tour of the entire ASA conference “grounds”. There were 3 floors, several hallways, several stops, and a quiet room (which turned out to be not as quiet). I ended up having a very easy time learning the layout because of this tour. This also gave us an opportunity to speak with the different ASA representatives who were able to help us in case we needed anything.
Following that was a boxed lunch in a general hall for all workshop attendees. I should have known to take my lunch elsewhere, but I didn’t. This is my own fault. I ended up sitting in the room with several hundred other guests. I did end up meeting a lovely woman who is a teacher in Round Rock. She and her co-teacher sat with me to talk and I was more than pleased with how inquisitive they were. I ended up leaving early as I became overwhelmed quickly.
The latter half of the workshop was not nearly as insightful as the first portion. We were able to do Art projects that were displayed all conference long. I did not finish mine, but as it did not show my name on the front, I was not ashamed to have it show. (Now that I think about it, I never got it back.) We listened to another lady who’s name escapes me now. She has had a tough time advocating for herself, and gave us examples and tools to help advocate for yourself and when needed have others advocate for you. Again, I think a lot of people, this put some perspective on how difficult it can be. I was happy to see others making note. Her daughter, Missy, also gave a small speech. She’s a junior high student on the Spectrum. Very nice for her first public appearance.
Lars Perner ended the day. While I was delighted with his jokes, I had hoped he would delve more into Aspie humor, than how Aspies don’t often get humor. Alas, that did not happen. Nor did the Leadership portion because of our unattended presenter. I really hope to be able to get more information on Leadership skills, but perhaps later, or next summer.
I know there was very little to this day, but there were more the other three. I will have those installments as I have time. Because of the energy exhausted during the 4 days at the conference, I ended up having to take a week off from most major duties. As a result, my memory is trying to lapse into “long term” from “short term” in these events. I did leave out some of my more unfortunate experiences as they weren’t because of the conference, but just happened to occur at the conference.
Until next time….
Melody @ July 19, 2010
Autism Society of America Annual National Conference 2010
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Before I get started, for all the Americans in my audience, I hope that your Independence day went well. We spent ours mostly on the road. We drove down to Austin, spent 6 hours before we finally had to come home. We had hoped to stay the night, but the boys were unable to handle all the days events without melting down. Overall, it was an enlightening experience that makes me aware that we still don’t have this planning thing down 100%.
This week, the Autism Society of America is having their annual National Conference right here in the Dallas area. Thanks to the Autism Society of Collin County, I will be attending the entire conference. I’m especially looking forward to Zosia Zaks’ (author of Life and Love: Positive Strategies for Autistic Adults) pre-conference workshop, Making a Name for Myself: Developing Individual Self-Advocacy and Leadership Skills. As well, Sandy Yim, Alex Plank, creator of WrongPlanet, and Jason Ross are delivering the keynotes on Saturday, Making Connections Online: Communicating through Blogs and Online Communities.
As well, on Saturday, I will be speaking on the Speaking for Ourselves: Individuals on the Autism Spectrum panel. I feel I’ve come up with a pretty concise evaluation of my life for my 15 minute speech. As well, there will be 3 others to speak. For those coming to the conference, I invite you to come to the panel. For those in the Dallas area, Saturday is discounted to $50 per person, so I would also encourage you to come for that day. Included are presentations for fathers, grandparents and Spanish-speakers.
I will be tweeting from the conference as well. Luckily, there is a sensory room available. There will also be lots of vendors to peruse. I’m hoping to make some contacts. I have made business cards for both this website and for ASAN, Dallas chapter. As well, I have 3 t-shirts that I will be wearing to show my devotion to Neurodiversity and one with the website logo on it. I hope you will all keep up with what’s happening through the tweets. Feel free to follow me on Twitter!
Melody @ July 5, 2010
Ari Ne’eman confirmed!
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This year has been quite a ride for Ari Ne’eman. He was nominated late last year to sit on the National Council on Disabilities. His nomination was placed on hold anonymously just before the vote to confirm all the other nominees. He was later appointed to the IACC. Somehow through all of this he earned his Bachelor’s degree.
Now the news today, the anonymous hold on his nomination was removed and unanimously the Senate confirmed him to the National Council on Disabilities. (Read Disability Scoop for full details.) Having worked with Ari and the rest of the Autistic Self Advocacy Network this year to set up the Dallas Chapter of ASAN, not to mention on other projects. I’m very happy to say Congratulations Ari! No one deserves a seat more than you. Even higher congratulations are in order as well, not only was he confirmed, but he is the youngest to ever be confirmed to the Council at the ripe ‘old’ age of 22 and the first Autistic as well!
Melody @ June 22, 2010
On Being Disabled
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This is an emotional subject for me. I don’t typically like to think about it as it hurts. In my nearly 28 yrs living, or the 10 years since graduating from high school. I have gone to a community college, a university, and worked a total of 4 jobs. The community college I was at for 3 semesters. The university, 5 semesters, which ended in me dropping out because my anxiety issues became too great. 3 of the 4 jobs lasted no longer than 3 months. Not from my lack of trying, but because the anxiety I experienced from them finally crashed down on me.
After I had my 6 yr old, I finally decided to stop trying to work, so I could devote my time and energy to him. I know it might sound cruel to the outside person, but I’m thankful for their Autism. I have been able to stay at home with them and really nurture them without anyone batting an eye, even as they became school age. I think this is one of the biggest reasons everyone compliments us that we have such happy kids.
This next school year, they will both be at school full time. While other stay at home moms talk about going back to work, finishing their degrees, or some even furthering education, I have felt this weight about the fact that I can’t really do any of these. I’ve spoken about going back to college, but with some recent increases in stress, I’ve realized I can’t handle that. The same can be said about rejoining the work force. That’s without looking at the fact I have no real work experience.
I’m very happy with the progress I have made with regards to this website, the new ASAN chapter I’ve started, and in general promoting the Neurodiversity message. In the coming months, I’ll be unveiling other work that I am doing within the ASAN organization. I work hard at all of this and somehow, I can handle it. One friend of mine suggests it’s because I have passion for it and it’s all telecommuting.
To put it simply, when I need a break, I can take one. I need breaks much more often than the normal person. I’m lucky to have a very understanding husband. He reminds me that people without my issues can’t hold jobs. That I’m still contributing to our household even if it’s not financially. I’m grateful for this. It still leaves me wishing that I could find a real job that could be as understanding.
Melody @ June 11, 2010
DMN New Guest Blog
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I’m so thankful to Leigh and all the editors at The Dallas Morning News Moms’ Blog. They really help to get the words of Neurodiversity, understanding and support out to our larger communities. I wanted to give everyone the chance to go over and comment on their blog.
Today’s guest blog is about nonharmful ‘behaviors’. With the work that each of us puts in each day, allowing ASDs the opportunity to stim is the least a family can do. I put it more eloquently than that though. Hope you enjoy.
Melody @ June 9, 2010
Updated Website
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As you can see, I have once again changed the look of the website. I wanted something that looked at little more clean. As well, rather than a forum, I have switched to Yahoo! Groups. I did this for two reasons; 1, because no one was using the forum, and 2, I have had questions on whether or not we have a listserv. Feel free to go sign up on the Yahoo Groups page. You can set it to checking it on the web, getting a ‘daily digest, or individual emails.
I feel this is a great step for the website to create more of a community. As some may have noticed, I haven’t updated nearly as frequently, which I intend to change over the summer. Most of us as parents have very little time, but we all frequently check our emails, typically. This gives a way for us to have a community without having to daily check a forum.
I will update again very soon, so check back if you don’t get notified of updates. I have a lot of exciting things coming up, with kids, self, and advocacy!
Melody @ June 7, 2010
Sensory, Special Needs Catalogs
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My good friend at the Dallas Morning News Mom Blog created a post today about a set of Special Needs catalogs. It got me thinking about all the catalogs I have found over the years. I haven’t posted a blog in quite some time and for that I apologize, but I hope this one will be helpful to some of you.
For those unaware, most Special Needs catalogs have whole sections of products for Sensory Integration. Everyone suffers somewhat from sensory issues, and most of us Spectrumites do quite a bit. I often dream of making a sensory ‘floor’ on a 2 or 3 story house. One for each member of the family attuned to their sensory needs.
To that end, I have decided to share my ‘stash’ of Sensory catalogs I have come across. All of them you can request catalogs from for free. There are some that will keep you on their mailing list and send you a catalog each new season. Each one you can get roughly the same products from, but each has it’s unique items you can’t find elsewhere. All links go to their Request Catalog page as they can sometimes be difficult to find, but keep in mind, most if not all have their catalogs available online as well. I just prefer copies I can take with me to write or put stickies in.
- School Specialty (formerly Abilitations and Integrations) gives various options depending on what you need. I get the Special Needs catalog as well as the Sensory, Learning & Behavior Solutions catalog. My favorite product, which is from their own line, we ordered from them is their Gel-E-Seat as it’s multipurpose. It serves as a weighted lap rest, a movement seat and a fidget. After two years, including a move across country, two very rough preschoolers, it still serves it’s purpose, though has lost some gel. I would still recommend if you have a sensory room. I found it calming as a fidget, my boys used it for it’s other two purposes.
- Southpaw Enterprises, similar to School Specialty creates it’s own line of products. We have yet to order anything from Southpaw, but that’s not saying a lot. We try to find things locally. However, I’m relatively confident that the wonderful therapy center we take the boys to uses their products.
- Therapro, Inc while I’m not aware of their own product line, I am impressed with the items they do have. It’s all well arranged and you can find things in their catalogs that I haven’t seen in any others. I very much recommend their catalogs.
- Flaghouse catalogs are the ones that Leigh was speaking about on her blog. I would recommend reading her blog for information. I have requested my catalogs from them and may update this post later.
- Fun and Function found me today on Facebook. I immediately looked at their digital catalog and found an item I want. They have several types of weighted clothing, but it’s the first time I’ve ever seen a weighted cap. Their multisensory section while it has some large dollar signs give great ideas on how to create a soft ambient room for calming.
What I typically do is keep these around and refer to them to teachers, therapists and other professionals. I’ve given old copies away to new therapists as they often don’t have their own collection yet. You can also pretty reasonably find gifts for friends and family in them as well. You obviously need to be attuned to their sensory issues, but they make very personal gifts. Of course, they are also great to refer to if someone doesn’t understand quite what to get for you as well (only kidding!).
Melody @ May 19, 2010
Impulsivity
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A month ago we were celebrating the boys’ birthdays. Subsequently, we also had to plan for their yearly IEP meeting. All of those events went well and as planned. Since then though, I have noticed my 5 yr old (the youngest) has become much more impulsive. It’s really been building up. He already has sensory issues, his ASD diagnosis, but it’s becoming ever so clear he is definitely ADHD.
He has no patience. He used to be really good at waiting the 5 minutes for us to stop what we’re doing before attending to his needs. Now he has a hard time waiting more than 30 seconds. If he doesn’t get what he wants, he lashes out then immediately apologizes. So he knows what he’s doing is wrong, but doesn’t seem to have that process time before he does the action.
So my choices are many. We’re going to implement a ‘Good choices, Bad choices’ system. For every good choice, he gets so many tickets which can be redeemed for things he wants. They use this in the floortime group we have him in and it works for them. When he makes bad choices, he gets tickets taken away. So he can always do lots of small ‘good choices’ to gain tickets back for a bad choice he did. We need to get a new sensory diet in place as his sensory needs have changed. I really want to try everything before looking up psychiatrists and neurologists to take him to. We are also thinking about ways to add caffeine to his diet in very small doses. He generally doesn’t like most things with chocolate, won’t drink any drinks that typically have caffeine, so it will be difficult to add it. We’re hoping to see some of his more nervous energy tempered a little. I just don’t want to give him any medication if we don’t have to.
What changes do you think would help? I’m at a loss of where the sensory issues begin and end, where the Autism issues begin and end, and where the ADHD issues begin and end. I can relate to my older son much better because he and I come inward when we get overloaded, but sadly, that is not the case for my younger son.
Melody @ May 4, 2010
Blog on Dallas News, Moms Blog
Posted in: Advocacy, Education, From the Webmaster | Comments (2)
I recently wrote a blog for Autism Awareness month for the Moms Blog for Dallas Morning News. It was published online today here.
Autism Awareness means…Autism Awareness means a lot of things to a lot of people. To some, like myself, it is hope for the future. For adults with Autism, awareness brings the chance to spread a message of acceptance, accommodation and accessibility. Our hope for the future is to have the outside world understand ‘our kind.’
I hope this not only for myself, but for my two Autistic children as well. Our family believes in Neurodiversity. Neurodiversity states that neurological conditions are a normal human variation. The abnormal neurology gives each of us areas of strength as well as various difficulties. Those areas of strength and deficit can vary greatly between each individual.
The hard areas that can be, should be treated. Intervention is still one of the best predictors of independence as an adult. What can’t be treated though should be accommodated. Other areas should be accepted. Is the behavior harmful? Does it cause the person great stress? Those are some of the questions we on the spectrum ask parents to think about. The most important aspect though is that we have access to all the things that can help us be meaningful contributors to our communities.
Autistic people from all functioning levels can be helped by the goals of Neurodiversity. Accessibility gained to keep a person in their own home rather than be institutionalized. Accommodations can be made to find employment, much like the programs by Department of Assistive and Rehabilitative Services. Alternative and Augmentative Communication devices would help relate to others their needs. For children, Neurodiversity means equipping their peers with social awareness to prevent bullying and promote acceptance of the unique differences.
All any parent in this world asks for is a happy, healthy child. Proper treatment, awareness, and acceptance can help all parents achieve that. You can start within your own communities, your own schools and playgrounds, or even your own home. Love and compassion begets acceptance. Everything else will start from there.
I hope you all enjoy. Those of you taking a look at my website for the first time, I welcome you.
Melody @ April 11, 2010
