So it seems to me that burn out is like a lot of things crammed all together. It’s anxiety and depression and suicidal thought* and overwhelmed and insomnia and oversleeping and loss of appetite and confusion and etc all wrapped up together. It sucks. I hate it. But what are the remedies?

Well, most things I’ve read are to get away from what’s causing the burn out. Well great. What if you can’t identify that?

I will admit. I’ve been having these feelings and didn’t know what to call them since just before I left for Autreat. During Autreat, I didn’t feel them, but they came back full force when I got home. So let’s analyze!

1. Work has increased. ASAN is growing by leaps and bounds and that means more work for the few of us on staff, the 2 new interns and I’m guessing the board as well. How are we not doing it without imploding? I’m not sure, but I suspect I’m not the only one running on fumes. (As noted by no one ever being on messenger, everyone struggling with deadlines and so on.)

2. We never found a house to move into. This has really bummed me out. I think it’s still bumming me out. It wasn’t just about keeping the boys in a good school. It was about being in a house, where the boys had their own rooms. And there was a place for everything and everything was in its place.

3. The school SUCKED ALL MY ENERGY for the first two months. We finally got some resolution last week, but there is this residual feeling from it. And I still feel I need to keep a careful eye on what’s going on. (Yes, I know most of you will tell me you always need to keep a careful eye. That’s not the point here.)

4. I launched my attempts to find stories for The Autistic Way: A Guide to Autistic Parenting. (Yay! I finally decided on a title.) But I have yet to email back after the first responses about what I’m looking for.

5. Meetings, conferences, volunteering and chapter issues are all constantly here. After “The Dialogue“, joining PTA, deciding to go to Autism Parent meetings, and trying to run my own chapter (that’s flailing at best), I’m surprised I can do 1-4. Then there’s also keeping up with appointments.

6. Oh. Hey look! I’m still an at-home mom. Which still means laundry and dishes and vacuuming and cleaning and running errands. Do I have time for this? I don’t think I really do. I know Rob at Lost and Tired talks about how that shows just how much one is doing for their family (and in my case “the community”), but it still doesn’t make me feel any better.

7. I’ve taken up a hobby. Naruto CCG. This is actually my one saving grace. It’s something I don’t worry about and is my “break” for the week now. Every Saturday night I go and play with these guys that know nothing about me and I don’t really have to talk and I can just play. It feels good.

8. I’m still the parent to two Autistic kids while being Autistic myself. I don’t typically do this. But GOOD GRIEF! The screaming needs to stop. The hitting needs to stop! The constant talking needs to stop!!! Yes, the constant talking upsets me more than the screaming or hitting. Those are temporary. The talking is constant. And it’s really really hard to ask for it to stop because then I feel bad thinking I’m ignoring them.

So which do you think it is? I’m pretty sure it’s all of them. But that is where the problem takes hold. How do you take a break from your life? When you come back, there’s just more that’s piled up. And when you don’t have that option, what are you supposed to do?

I know, some people will say respite. But that just deals with the kids. Go on a date while the kids are at respite. And talk about what? That we live in a little apartment, what we have to do at work, at home, with the school? That doesn’t get away from anything really. It’s just putting it in a different setting. Quite frankly, I want respite to have a purpose and not just be babysitting while the rest of my life keeps happening.

Again, as always, thoughts, ideas and suggestions are always welcome!

* I’m not saying I have suicidal thoughts, but generally when you want to “give up”, people will assume that you want to end your life. That’s not what is going on, but it is the assumption.

When we left off, I presented you with apps to help children with Special Needs. Some of the suggestions were for apps made specifically for this population, and others that are meant for general use. So I hope that you all found those apps useful.

Today is more for the Autistic parent reading this blog. These are apps I either use, or feel would be useful for people with other skills sets than myself. While some of these may be used in children and teens, I feel that have greater appeal to adults.

1. Round to It – ($2.99) – This simple To Do app has multiple list support, options for creating gift lists, jotting down notes, and emailing those lists. It also shows things that are overdue and upcoming. So if you have trouble with executive functioning, it makes it really simple to look at and prioritize.
2. All Done! – ($1.99) – Another To Do list app. I think this is more for people who have a hard time with a lot of bright colors and getting overstimulated. I prefer the color options to Round to It, but the neutral tones with this app certainly will appeal to other users.
3. Relax – ($2.99) – This one is going to be useful for those of you who get overly anxious. It gives you a scene to look at and relaxing sounds to go with it. There are a variety of options (9) for whatever scene you find relaxing. They also update it with new scenes, including accepting requests from users.
4. Groceries Grocery List – ($0.99) – Probably the most ingenious app I have seen yet! This app lets you customized to your local grocery store and price! It has commonly bought groceries, gives you total cost of the groceries you need, and flags coupon or sale items. Absolutely amazing to me!
5. iPrompt – (FREE) – This is more for those of you who do any speeches or presentations. It’s a teleprompter. I love this option as I tend to shuffle and shake pages when I try to speak. So having this as an option is rather nice. It even has the option to control the speed at which your text scrolls, so no shuffling or pushing your pages to find where you’re at. Love this app, especially with as many speaking/listening sessions as I’ve attended thus far.

These are all I have for “adult only.” I’ll bring you another installment of There’s an App for That! (Everyone Edition) later this week. Hope you enjoy these!

For Autistic Children:

1. Free Apps
   1. Autism Xpress – An app that shows basic faces. The colors are vibrant and the pictures, inviting.
   2. Talking Tom Cat – This cat copies everything spoken to it, then repeats it aloud for you to hear.
   3. Model Me Going Places – A group of simple social stories for your child to read about going to different places. While I think the concept is good, I prefer the customizable social stories other apps (below) provide.
2. $10 and Under Apps
   1. PBS Kids – My Journal – ($1.99) – This app has two parts. Created by PBS Kids under the Mister Rodgers Neighborhood Brand, this little app has stories that can be read and have multiple choice answers about responding to different things. Then you can also have your child create their own personal journal entries with simple words and pictures.
   2. First Then Visual Schedule – ($9.99) – Allows creation of personal picture schedules. It has some preset images, but you can also talk your own, and add your own voice over. Also the layout is visually appealing to me.
   3. iReward Chart – ($2.99) – There is a lite version to this app, so if you’re not sure, you can always try that out! It’s a chore + reward chart. The free version only allows one child to be add, the paid version you can have multiple children. As well, you can have as many or as little chores as you think your child can handle. Each are fully customizable, as well as the rewards.
   4. Social Stories – ($6.99) – This app contains 2 sets of 6 stories for young and advanced learners. There is also an option to create your own, but I suggest using their Stories 2 Learn app for that (below).
   5. Kindergarten.com’s ABA Cards – ($0.99-$1.99) – I’m giving you their website as they have a whole series of ABA apps for identification, problem solving, receptive learning and more. Each type is a new app, which means while they are each priced low, if you get all of them, it will be over $10.
   6. Larry the Talking Bird – ($4.99) – Much like Talking Tom Cat, Larry repeats what you say. You can also play a tune on the piano and Larry will sing it back to you. I’m not sure that extra feature is worth the price tag for me, but it might be for you if you have a musical child.
   7. iWriteWords – ($2.99) – There’s a limit to the preset words, as well, you can’t work on a single alphabet letter, only as the alphabet as a whole. However, that said, this app (haven’t tried) seems like a good investment if your child is still learning to form letters correctly. They also seem to write “correctly” much like the Handwriting Without Tears program. It also gives more spots to hit than HWT does. Definitely recommend.
   8. Sight Word Flash Cards – ($0.99) – Otherwise known as Dolche words, this app has flash cards for most readily used Sight Words. This is great for beginning readers, or those having trouble with spelling.
   9. Tell Time – ($1.99) – This simple app has 3 stages of learning to tell time. We haven’t gotten to this yet for either of the boys, so I have not used it yet. However, recent discussions on some lists made me aware how difficult it is for non-visual learners to learn to tell time. For those, I think this app would help gain that skill.
   10. Sentence Builder – ($3.99) – With 3 skill levels, pictures to help guide, this app helps learn to make complete, and grammatically correct sentences. It offers a range of pronouns, adjectives and verbs to construct a sentence.
   11. My Choices Board – ($9.99) – I had not seen this before, but very much want to use it now! My Daniel uses choice boards all day at school and at home. It requires us to take a picture, laminate, then apply velcro to any new toy or game he likes. This app you can do the same thing without creating binder after binder of PECS and pictures. If you’ve ever had to go through that process you know how tedious it is. If not, consider yourself lucky! At least now I know “An App can do that too!”
   12. abc PocketPhonics – ($0.99) – Many schools now days require their children to learn both Sight words and by Phonics. This app has children listen to words and pick out the sounds they hear to spell. I think the game-style interface makes this less grueling and instead makes it fun for children to learn.
3. Over $10 Apps
   1. Look 2 Learn – ($24.99) – This AAC app is listed under for children as I think some of the other apps are a bit more robust for adults. However, it does allow for customization, adding your own pictures, and adding a voice.
   2. Stories 2 Learn – ($13.99) – Unlike Social Stories (above), S2L is solely for parents and teachers to create social stories. The use of your own pictures, words, and voice create truly customized social stories for any use.

This is it for now. My next installment is my very short list of apps for adults on the Spectrum. Stay tuned! And please take the time to donate to our iPad fund for Daniel. Though I only listed one above that I expressly want for him, many more of these would also be useful for him, both at home and at school.

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.

This was a hard time in my life, and because I was unable to keep stable employment, or even stay stable enough for classes. By the end of my first year, I was homeless, on academic probation, and hopelessly falling into extreme anxiety. By the end of my second year, I had had several trips to ERs and Psych wards from dissociations and my actions during them. This is not something I normally share, but I think there’s important things to learn from my experiences.

Having married a wonderful man, who also had a period of bad financial times, we are now working tirelessly, on one income, to try to correct our mistakes. It’s difficult to do, or should I say impossible to do. I’ve finally decided my husband is right, the debt is too great for our meager income. And with no possible break, we are going to do something I’ve dreaded. In the end, our credit will be no better, but we will have much more plausible chance to rebuild from here and actually find a place of our own.

But what lessons have I learned?

1. I cannot do things by myself. I have to rely on support, both mentally and physically. What lead me to such a dark place before is that I didn’t have a good support structure around me.

2. I need to always realize it’s okay to ask for help. If I had done this sooner when I was younger, I probably could have gotten a lot more help. I waited, and I don’t want anyone else to wait if they feel they can’t do something. In some cases, it could truly mean life or death.

3. I have to accept what has happened. If I cannot accept the choices (and nonchoices) I have made, then I cannot move forward. I have been able to do this with some things, but not so much with others. I am working on it though.

My ASAN chapter is growing and we’re getting ready for our 6 meeting next week. I created a Meetup group for the chapter and have found new members because of it. As exciting as that is, I’m also focusing on our stretch to the 2011 State Legislative session. I will be working on getting a single word changed in the Health and Human Services bill.

Sec. 593.003. REQUIREMENT OF DETERMINATION OF MENTAL RETARDATION. (a) Except as provided by Sections 593.027, 593.0275, and 593.028, a person is not eligible to receive mental retardation services unless the person first is determined to have mental retardation.

(b) This section does not apply to an eligible child with a developmental disability receiving services under Subchapter A, Chapter 535.

It is definitely an exciting year coming up, but I recently had to change medication. When I was on this one previously, I gained 50 lbs over the course of 6 months. With that in mind, I want to start eating better and taking care of my body. I’m not happy with my shape. And I found that it’s easier for me to change several things at once rather than staggering the change.

When I change things several times over the course of several months, I have a much higher incidence of meltdown. So I have learned to if I do all the changes at once, it’s still only as taxing as changing one thing.

So I have joined SparkPeople. My husband and I decided meal plan for the next week. I’ve put in what my fitness goals are. I’m hoping to feel rejuvenated. But knowing I will need to go to a gym, I’m trying to figure out a sensory diet to help keep me relaxed. I’ll be doing Yoga and Pilates at the gym, so that should help quite a bit. I’m getting a big ball to help me do exercises at home. But what can I do to help me decompress? I haven’t come up with anything, but thought maybe everyone reading could help.

How do you allow yourself the sensory experience to help relax?

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.

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!).

—

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.

I’ve gone to another group that I don’t feel really meets my needs. I continue to go to it, because I feel like some of the younger Aspies could use a role model, even if I’m female. But last night was different. The adults with that were there were mostly my functioning level. Though, I can tell that their major perservation is not the study of ASDs.

One of my biggest ‘obsessions’ is definitely studying ASDs, both for kids with any form of Autism and adults who are more independent. I was responding to everyone’s concerns with my thoughts and ideas. And as I explained more and more, I was drawing more attention on myself. Finally, a ‘mother of’ looked at me and asked who I was and why I was there. It was pretty scary. While I didn’t mind the attention when I was responding, the thought of having to explain myself, even for a good reason, was petrifying.

I think I looked like a typical Aspie last night. I tend to not in day to day things, but when you get me in large groups like that, I don’t exactly know what to do. So I was sitting on the floor (all the chairs and couches were taken), not making eye contact, or even face contact, rocking back and forth, and writhing my hands. When I went to speak, I did so in a stutter until I knew it was truly my turn to speak.

I plan on creating (and have a meeting to discuss this tomorrow) a meetup for ASD adults. Nothing as formal as last evening. Definitely not like the other group. But just something to get together and talk or eat or play games. I don’t have the energy to create something that was structured like last night. The event alone was overwhelming and I had to take a good 15 min after it ended to calm down enough to drive in the car.

It’s also something I’ve been working on in therapy. I was to be able to push those boundaries. Where I’m comfortable without feeling so tense. Do any of you have any tips on how you get through those events?

I will say, out of all the ‘adults with’, I was the only one that expressed having children. Quite a few expressed not being in relationships. And others were working or attempting to find a job which seemed to mean they weren’t looking for a relationship. There was a couple there with one partner that is AS. It seemed to be fairly distributed independence levels.