My last post was about disagreements with NTs that leave me feeling inadequate. Today, I had a great conversation with a wonderful set of moms who I don’t always agree with and who sometimes don’t agree with me. To me this is significant because it was a support & networking meeting of other parents with kids on the spectrum. I like to go because I do my utmost to show respect their view points as they often show the utmost respect to mine. I want to thank them for this because in the Autism community, as we all know, there are so many sides, that if there is constant in-fighting, we never can show others what we all know.

So today, I want to address the people who don’t always show that respect, for whatever reason. I’m doing this because I’ve been trying to pinpoint for so long what it is that causes these rifts among our groups.

1. I am not disagreeing with you because I don’t care. In fact, we all very much care about the future for ourselves and our children. If we did not, then we would not be so involved. The people who do not care so much are not the ones present, but those who remain outside the circle for whatever reason. I care so much about the future of those with Autism because I have been where they are at now, and do not want to see the heartache in their lives that I experienced in mine. I was homeless. I dropped out of college. I became a single pregnant woman. I went in and out of mental wards. And I have 2 years of my adult life that I don’t remember over the 11-12 yrs of my childhood that I have no memory of. I have been there, done that, and I will do everything in my power to make sure that doesn’t happen to a single other person. I don’t talk about these things because they are hard memories (or sometimes the lack thereof) to handle. But if you were in my position, having gone through what I’ve gone through, wouldn’t you do the same thing?
2. I am not arguing with you because I like to argue. I hate arguing. It’s emotionally, mentally and physically draining. I argue for the greater good, because I feel all the pain and suffering I go through arguing, if I can make one person understand, I have done my job. My husband has had to cradle me in his arms on numerous occasions because I literally cannot handle the after affects of these disagreements. If I had no support, I would be in a ball in a corner, but I’m lucky to have what so many others like me don’t have. Support. I wish I could thank my husband enough for what he gives me. And I know that this doesn’t excuse the arguing. In fact, if I knew how to, I’d stop the arguments. I just don’t have that, and as much as I try to learn that skill, it’s just not there yet.
3. Be understanding that I don’t have your theory of mind. If you can forgive your own child’s differences and difficulties, please try to do the same to me. I know how difficult that is as we all try to fight with professionals, and teachers, and administrators each day to make them understand our children’s invisible disability. It’s hard to look past my typing and demeanor, my physical appearance of togetherness, to see that there is a disability in there. I stay in my comfort zone, where I  know that with the supports I have in place, we can pick up the pieces.
4. Please don’t tell me what path I should take with my kids. We are all different, and we all do our best. I’d especially like to ask that you don’t keep telling me what path to take when you can see my path is working for my kids. I chose the path I did because of what I said in #1. If you would like to understand more about what we do each day for my two boys, and can see the progress they have made, please do ask. If you chose not to take that path, that is fine. But in the end, your path is not working like you expected, please refer back to #3. I cannot understand why you continue to tell me to chose a different one, when my path is working and yours isn’t. I’m not saying you’re not doing enough, or that you need to switch to my path, I’m just suggesting you look at what you’re doing to figure out why it isn’t working.
5. Helping Autism is not a sprint, it’s a marathon. Someone I know keeps using this phrase, and I keep picking it up. But it really is. The needs of an Autistic individual are always changing, and you need to keep looking at what you’re doing so that you can change accordingly. If your path (#4) isn’t working, find people who HAVE been successful on your path and get their feedback. I know that this is not what I’m ‘supposed’ to say. I’d much rather everyone take my non-evasive way, yes. But if you chose not to, there are those who have been where you are, and have had children come out on the other side with good, great or brilliant results. Find those people. They can help guide you on your road. And if at once you don’t succeed, try try again. But always remember, the sign of insanity is doing the same thing the same way every time and expecting a different result.

I hope this has helped some of you understand me. And for those who are parents on the Spectrum, I do apologize that this was not as useful to you as it was to those from the outside looking in.

I had an argument on a parent list that I’ve been a part of for just over a year. I love the organization’s leader as she’s also Aspie and great to bounce ideas on. But this recurrent theme that I keep seeing keeps leaving me in tears.

Without going into detail about the specifics, I feel that the theme is very important to touch on.

It’s about educating, training, accommodating then allowing a person to live independently. As Autistic adults, we know how hard all of these things can be. For myself and many of my known readers, we all are pretty permenantly disabled for one reason or another. We made it through our teen years some easily, others much more difficultly. This is the nature of the Autistic life.

When I drive home the three A’s of Acceptance, Accommodation and Accessibility, the recurrent idea is that these things are not happening. General population acceptance of our disabilities is definitely not there, but that’s something we will continue to work on.

What I find difficult is that within parent circles, it’s okay to be accepting of your children’s differences, but when it comes to an adult, especially another parent, there is far less acceptance, to the point of personal attack on the person. When I attack an ideology, an organization or other such things, I am not attacking a person. Yet, when I do attack these things, I find myself more often than not insulted in one or more ways. Either because I don’t “represent” the “true” “reality” for many Autistic adults, or because I “attack” or “complain” too much and am not willing to “do anything about it.” If it’s not that, then I am accused of attacking someone personally even if I was very direct in criticizing a group or ideology with no personal flings.

This is difficult enough for me to handle. But then to be further insulted that just because you live with someone with Autism, means that you automatically know what it means to live with Autism. Independence is very difficult for many of us. If I did not have my husband, I would not be considered “independent.” So when you’re supporting financially, emotionally, and/or physically, an Autistic child, it is not nearly the same thing as we “independent” adults live with every day. What happens when you’re gone? How are they going to support themselves?

Many of the programs out there cost exorbitant amounts of money to train your child only for them to live and work in a sheltered program. Is this what you want for your child, or would you rather they be “independent like me?” I know I’m preaching to the choir. But why in one breath are we Autistic parents seen as extraordinary, then in the other unrealistic in what we want to see out of programs and services to address our brethren?

I really want to understand this. My husband says I never will because I’m working from the idea that everything is logical. (He’s right, by the way.) If you want your child to be independent, to not want to worry about what happens to your child when you are no longer around, or no longer able to take care of them, why do you scoff at our ideas? Is it so much to ask that instead of training a person to work in a sheltered workshop, that you instead give the supports to work in a normal workplace? If they are having a hard time coping with certain work situations, why are you taking them out of the workplace and putting them else where? Wouldn’t 1) Emotional and Job support, 2) Life Coach or 3) Job liaisons help the person stay where they are qualified to be as well as give them the skills to take it to another place?

In the end, if they can no longer work in the sheltered workshop, where will they go? Most likely to a group home or institution if you as parents are no longer able to support them or be there. How is that helping the person? And do you truly think about these things when you set up the “great” programs? Or are you just looking for the next year or two?

It keeps going round and round. And until someone stops to think, I do not think it will ever change.

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. She had given a presentation during the morning hours that I was sitting with the other bloggers. While I had been so disappointed that I did not get to her panel, I was extremely happy to see her. We ended up talking until they closed the Exhibit Hall down. Her most helpful tip that I will definitely be using next summer, is to buy membership for the different museums. That way when someone is about to meltdown (adults or kids in our case, lol), you can leave and not feel you’ve spent a terrible amount of money for only 30-60 minutes. You will be able to go back and enjoy it again and again. Please check the book out. I know I will be!

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.

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….

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!

Another Guest Blog

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.

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!).

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.

April is Autism Awareness Month

April in my household means 3 things. It’s the start of the Autism year. It holds both boys’ birthdays. It is the start of Spring. Although, depending on your family history, you may also see it as National Child Abuse Prevention Month, Stress Awareness Month, Alcohol Awareness Month and a host of others. Does anyone else find it odd that Autism Awareness shares a month with the three I’ve listed?

With the fear campaigns that go along with Autism, you’d think they picked it just for the three above. They try to show increase in child abuse in families with Autism because of a ‘lack of services’. They definitely say it’s more stressful to be a parent of an Autistic child. When you mix all of those together, surely you get an increase in Alcoholism.

But I digress.

April 2, 2010: Light It Up Blue

World Autism Awareness Day.Org

“They” will be starting tonight. Across the US, the Light It Up Blue campaign started by Autism Speaks in honor of their World Autism Awareness Day has encouraged major buildings to turn blue for Autism. I know AutSp’s puzzle piece is blue. They have also asked that people wear blue on Friday April 2, 2010 to show their support. To me, this just shows support of AutSp’s mission. I have made sure to tell everyone I know not to wear blue tomorrow.

Instead, a variety of suggestions have been tossed around for those of us that want to show our support to Autistic people (including ourselves). I have chosen to generally ask others to wear a Spectrum shirt, ie something with rainbow colors. I know rainbow usually signifies Gay culture, but it is also a spectrum that signifies the Autism Spectrum. Conversely, you can choose to Infinity Symbol (like above), the Autistic Pride Flame, the “I’m not a Puzzle” shirts, so on and so forth. The key idea is to stay away from puzzle pieces, puzzle ribbons and solid blue.

As this month goes forward, my goal is to attend as many of the Autism Awareness events I can. Make sure the ND presence is known off the internet. And of course, execute a well planned birthday party for my two Autistic kiddos and their non-Autistic classmates. Integration works!

Three things have happened in the Autism world. Parenthood started airing on NBC last week. Last night was the second episode. The episodes are also available to watch online if you’re like me and don’t want to admit you’ve watched it. One of the three families has a son that was diagnosed with Asperger’s in the first episode. A lot of parents of Asperger’s kids said they really identified with the parents. What became apparent was that Asperger’s children are still seen as not having acceptable ‘behaviors’ to stay in their placement. The boy was being kicked out of a private school in the same episode. Just another place where Asperger’s is not accepted and accommodated.

—

Next up is the character known as Michael E Robinson, Jr. (link to original article) He is an acquaintance and all of his ‘facts’ are what he professes to be true. As you take a look at the article, the fact checking shows that most if not all his facts to be false. He has great zeal and passion about what he’s doing. The problem is, he has been alleged to have scammed money from parents, taking others work as his own, and tends to over-embellish his abilities. His numerous claims identifying him as an ally to the Neurodiversity community are false.

It does leave the question, why would he do such things?

—

Lastly, Autism Speaks has nominated John Elder Robison to their Scientific Advisory Board. J.E. Robison is most famous for writing the memoir Look Me In The Eye: My Life with Asperger’s. On the surface, this looks promising. Autism Speaks is finally accepting a person with an Autism Spectrum Disorder into their community.

But what looks good on the surface is not so widely accepted by the Neurodiversity community at large. Mr. Robison states in his acceptance:

Research into causes of autism is important, but I want to see more research aimed at remediation of specific components of autistic disability.

While he sees remediation as a goal, the troubling part is that he wants to still research in causation. The subject has been rehashed again and again. The only true reason to research causation is to find a cure. A cure many do not want for themselves.

To go on, this is just one appointment. The Scientific Advisory Committee has 30 members. He can make an impact in the committee. Perhaps another 5% of research grants will go to Quality of Life research. This does not help their Awareness campaigns that show Autistics to be trapped and hopeless. They do not preach Acceptance. If they did, more than just one Autistic person would have been nominated. They continue to take desperately needed donations out of the communities. What little they do for the Adult Autistic community is hold online “townhalls” that cost $100s to get into which circumvents most Autistic Adults attendance!

This is very displeasing to many. To try to work from within is a noble cause, Mr. John Elder Robison, but the naivety that just one man can change the whole of a community so rooted in fear, anger, deceit and hate could be damaging for us all.