So apparently I’m suffering from burn out. Burn out from what? No ******* clue! But I’ve come to decide that I don’t like it!

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.

Recent discussions have been going on at The Thinking Person’s Guide to Autism. I love the people over at TPGA and was happy to read along all week. The fact that I knew people involved in both the posts and discussion probably didn’t hurt a whole lot either.

The discussion started over something Robert posted on his blog, then Zoe responded on her blog. To me, it doesn’t really matter how the whole thing started as I think open dialog between the parent Autism community and the Autistic community is a good idea, especially since I reside in both camps.

However, when I finally found Rob’s twitter account I was surprised to see, we live in the same town! Many of you may have not noticed, but I don’t regularly publicize where I live. Most of you know I’m in Texas, most should know I’m in the Dallas-Ft. Worth Metroplex. But with a landmass the size of Connecticut and a population size more so, that means I could live in quite a few places.

Some jokes were made about the situation I was presented like the insistence that we’d run into each other at the supermarket. I was just trying to prove them wrong by showing how Rob and I don’t live near each other. At just over a quarter of a million people, that should be quite easy, no? I found out I was wrong.

Not only did we live near each other, we live exceedingly close to each other. So close that it’s possible (actually highly highly probable) that we ha already run into each other and just didn’t know who the other person was! If our kids were slightly closer in age, they would even be at the same school.

This has already unfolded on both my link above and on ThAutcast which is why I have little qualms stating it here at this point.

All of the above along with my own feelings of guilt that I knew where he lived but he didn’t know where I live lead me to send him the email that’s mentioned in the above two links. But it’s lead to me wondering…

How much information is too much information? I now regret the fact that I told him. I also regret looking him up. As soon as I learned where he lived, the discussion going on online ceased to be among anonymous people. Would I change anything I’ve said? No way. I own my words. I can get embarrassed or regretful, but what I have said and done is what I believed to be the right course of action at the time.

Was this an invasion of Rob’s privacy and that of his families? I don’t know, but I do know it was not seen as appropriate to him or even most of my closest Autistic friends. And what do I do now that everything has blown up?

I don’t particularly know what to do.. I’m afraid to go to the store out of fear of running into Rob and his family. This is part of my own disability. I have leanings to be agoraphobic, period, so having something like this happen in my own backyard so to speak makes me even more so. I don’t expect him to do anything rash, nor myself. But there is already tension and I hate tension and tension leads to anxiety attacks.. So if I see Rob (or more appropriately when I see him), will I have an anxiety attack in front of him? I certainly hope not, but it will probably happen, or I’ll do my best to avoid him.

Seeing as my husband knows everything going on, he will most likely try to be supportive of me no matter what happens. So hopefully he’ll be at my side when I do eventually see Rob, unless we decide to meet each other and it not happen by random chance. I’m really afraid of that random chance though.

So this is what happens when you have access to too much information and give out too much information. Hopefully things will fall in place together, but for now, I sit and read and try my best to stay inside because my fear is too great.

In case you can’t tell, the theme for today is “NEW”! You may recall that last year we moved out of my mom’s house and into an apartment. By doing so, we moved out of the old school’s boundary lines and into a new school’s boundary lines. These schools are literally less than 5 minutes apart distance wise. We looked hard for a house to rent in boundary lines. Nearly had two, but they fell through at the last moment. We were given a last hope that perhaps the boys could transfer into the old school, but found out only days before classes started that that would not be happening. So we prepared the boys to go to a new school.

Despite being 5 minutes apart, the schools are no more alike than an apple vs. an orange. Sure, they are both still public schools in the same district, but that’s where the similarities end. The first days left Daniel without an aide, left Stephen over-medicated and left me confused about what was going on due to lack of communication.

Daniel: Without an aide, because we were not explicit enough in his IEP. It says “Close Adult Supervision” at all times. It also says 1:1, 1:3 and 1:6 for most instruction time. But this did not translate together as “1:1 aide at all times”. This is where the lack of communication left me unable to know it was happening until his team lead said “We’re going to try to put an aide with him at the end of the day.”

Stephen: Over-medicated, because it’s a patch, it releases medication the same throughout the day, except when it’s hot. The new school doesn’t have the lovely new air conditioning system that the old school has (probably because the old one was only built ~13 yrs ago). So with 100+ temperatures each day since school started, it was warm inside the building. This means that his patch was releasing too much medication. It was what we call at home “Zombephen”. The teacher thought he was acting very well in class because he was staying in his seat and being quiet. Luckily I went in for lunch the first day and saw my Zombephen and now we know.

Me: Lack of communication is a huge problem. I’m not getting reports home for either boy. I’m barely able to tell whether or not they’ve eaten lunch. And I still don’t know if Daniel has a 1:1, though, I suspect he does as the same aide picks him up at the door in the morning and brings him out to me in the afternoon.

My solution: Parent-teacher conferences! I have one today at noon. I have one on Monday at 1. And Thursday I will be meeting with the teams as the boys have triennials this year. Hopefully all will be resolved through all of these. But until they are done, I really can’t say for certain. All I know is I rather hope that I don’t find out any majorly disappointing surprises.

My deepest apologies for the lack of updates. A lot of what I’ve wanted to talk about is part of my Autreat presentation (separate links for those looking at the pages). As I’m unsure who is reading my blog and going to Autreat, I didn’t want to ruin the presentation by presenting all the information here. And believe me, there is a LOT of HORRIBLE details that I’ve researched while coming up with my presentation material. (I will post a copy of my outline and resource page once Autreat is over.) So I greatly apologize for my lack of posts.

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Last month, while meeting with some other Autistics, the subject was brought up that it would be nice to have a Neurodiversity Parent Organization. I’ve entertained the thought in the past, prior to my employment with ASAN and prior to starting ASAN-DFW. Since then, and becoming active at the boys’ school, and become more active in general, the thought was pushed to the side. I know I’ve spoken to some within ASAN about the need to reach out to allied parents, but we are spread so thin right now that it’s just not feasible.

Yet, being semi-active on Twitter, Facebook and now Google+, I’ve noticed more and more what I would consider Neurodiversity centered non-Autistics. People like Stuart Duncan, the ladies and gentlemen at The Thinking Person’s Guide to Autism (Shannon Des Roches Rosa, Liz Ditz), and others like Steve Silberman (well known for his Wired article). Some of these ladies and gentlemen are parents, others professionals and so forth. The one thing these people have in common is that Autism is not a burden to them. Yes, it is difficult sometimes, all lives are difficult sometimes; some moreso than others, albeit.

So is there a need for a ND Organization for Non-Autistics? I think there is. I think as much as these people have found communities online, there needs to be some place they can gather offline. None of this chelation, diets and “woo” as some like to call it. Just a group where their kids can be who they are with no pressure. Where they can meet with no pressure. No one trying to sell cures or treatments. Just parents, professionals and whoever else to come say, “Yes. Autism can be disabling, but it can also be beautiful.” “Yes. Autism has a lot of downs, but it also has a lot of ups.”

I will be going to Autreat in just over 2 wks. A place to be myself. I was planning on taking Daniel and his iPad until travel plans got delayed and ticket prices went up. Because it is a place where he can be himself, and no one would stare or try to push him to respond quickly. I would love a place for him like that here, in his own community. And one where I wouldn’t have to keep saying, “No. I don’t believe in that.”

As many of you know from my chronicling, Daniel has settled in nicely with his iPad and uses it at home, at school and in the community. He does a great job of everything but charging it at night. He did the most amazing thing at school on Friday with his iPad and I’m extremely proud of him for his courage.

At his school, all students earn school money that gets to be redeemed at the end of the week for toys, gifts or certificates. All year, Daniel has struggled to have enough to get a certificate, but two weeks ago, the school store marked them down to $20(s). He had enough so I asked him if he wanted to get one. In the end, he got “Reading to Another Class”. As is historic with kids in 1st grade, they chose to go back and read to their Kinder teacher’s class. This class happens to be Daniel’s little brother Stephen’s class so it worked out quite well.

Friday was the day he got to read to the class. He and I sat down with his iPad the week prior to decide which book to read and it was decided on “Green Eggs and Ham” by Dr. Seuss (Thanks to Ocean House Media!). We got into the classroom, and he sat down in the teacher’s chair. He very softly said to his K teacher and his aide “Ready?”. So softly in fact, that I could barely hear him standing right next to him. He was nervous, but he started the app. Then he turned to me and said “Read to me?”

You see Green Eggs and Ham along with the other books produced by Ocean House and many other eBooks have the option of the story being read to you rather than you reading it yourself. This works out great for Daniel, especially in this case.

I nodded and he started the book. We got the volume turned up so everyone could hear and off he went. He swiped the pages and he did hand movements. He showed everyone the cat and he asked if they heard the splash. He laughed in several parts. He was so excited as he left. He really did an excellent job. He stayed in the chair, and he left the book pointing outward for everyone to see.

I stayed after for a few minutes because there were several “Huh?” looks on the kids’ faces. I explained Daniel’s Autism makes him think differently so some things that are easy for them are hard for him, and visa versa. And they all seemed to understand. As much as a Kinder kid can understand at least.

I left so excited and so proud. He really did a fabulous job even if he didn’t read it himself, he was able to share with another class. I think it will be one of the most enriching experiences those kids will have for a while.

Lots of things have brought about this post. It is a culmination of events over the past few years. When we moved to Dallas, I found most everyone was biomed. Those that weren’t became so. I love many of these people as people. They are kind, caring and supportive individuals.

I constantly hear, “you’re such an inspiration.” “You give me such hope for my child.” Or even, “Your son doesn’t look Autistic.” “Your kids are doing so great.” “It’s obvious you’re a great parent.” I like some of these, feel ambivalent to others and love the rest. And I hear these sorts of things directed to other Autistics.

I can’t say I understand all of what’s said. We are just people living our lives.

But what gets to me… and this comes from watching the awesome Loving Lampposts, the horrid Autism Now series on NewsHour, to knowing Wakefield is going to be in town next week, and finding out an Autism is Treatable segment will be on the news in the morning… How can we be inspirations? How can you hope your child turns out like us? Then in the next breath, when we give advice, “Well, that’s how you choose to do it. And we’ve made a different choice that works better for us.”

It isn’t like I’m talking about specific treatments. I’m just asking for you to learn your child. To accept your child. To build a relationship with your child on your child’s terms. Not yours, theirs.

Don’t call me an inspiration then ignore all advice I give…. especially when you ask how I did it… how I do it… and love the results you see.

Today is Autism Acceptance Day.

Tomorrow is Autism Awareness Day.

Next week the boys have their birthdays.

This month is supposed to be devoted to Autism.

After today, I realize more than ever the need for accommodations for Autistic children and adults. I observed my Stephen at school. I had my meeting for Daniel’s upcoming IEP meeting this afternoon. My mind however kept going back to this Wandering code. To be honest, it’s because of the accommodations, services and goals both the boys need.

Daniel is your “classic” wanderer. The one that will walk out of the classroom. The one that will bolt outside. The one you have to stay close to, and even hold his hand when he’s in “that mood.” Stephen is your “typical” wanderer. The one that walks around the classroom. The one that sees something shiny and goes to it. The one that needs to be reminded to sit down. He will bolt too, but always within safety and always for attention as he loves the chase.

At soccer, people consider Stephen to be our runner. At school, people consider Daniel to be our runner. They are both right. Stephen can run like the wind when he’s playing. Daniel runs faster than the wind when he’s escaping a situation. To anyone who watches, they just both look like runners, wanderers, elopers. Honestly, they both have a function in the behavior. The place it diverges is that one runs safely, and the other dangerously.

So what is this getting at? Well, earlier this week, a mother read my post to the Wandering Code and we had an argument. This happens and I finally stopped replying. But one of the things she said made me think.

what the CDC seems to see is easier access to funding specifically FOR research and education….. Coming up with conclusions is the whole idea but that doesn’t happen without funding and education. Funding and education, especially in the current service-slashing environment, doesn’t happen without certain paperwork, definitions and stamps of approval.

The reason so many want this code is for funding. There’s not enough funding to go around. I think of particular interest is this page on IACC website. We see how much funding there was in 2008. (Sorry, don’t see anything more recent.) 37% of all research dollars go to finding a cause and cure for Autism. Yes, I realize 24% goes to interventions and treatments. But to look closer, only 5% goes to studying Autistic adults? My point is, if you are worried about where research dollars are going to come from, try speaking at the IACC about the fact that you need help with your child now. That funding cause and cure research over helping those here and now is foolish.

A diagnostic code isn’t going to change where the funding comes from. You will still be fighting over that same 24%. Then what? There are interventions for children that could help your child communicate. There are interventions that can help your child be more independent. There are interventions that can help your child lead productive lives as adults. Do you want to take away all those opportunities for your child? The child a few years younger? Or would you rather speak up now and get more research funds to go to helping your child?

When I speak of Autism, please know I love your support and understanding.

When I speak of my Autistic children, please know I understand them very well because I’ve been diagnosed myself.

When I speak of the current state of things, please know I am happy with my life and my children, but know there’s already room for improvement.

I love that you are interested in what is going on in my life. It’s been a long time since many of us have spoken. Our lives diverged and this little thing we call the internet has connected them once again. It seems we now have something in common. You may teach in a Special Education classroom. You may be a Speech, Occupational or Physical Therapist. Maybe you are just in education. Whatever  it is, it’s amazing to see how our worlds collide once again. But this time, we are not peers or relatives, we are on opposite sides of the same quest. To make life for those with Special Needs fulfilling, independent and happy.

This doesn’t mean we’re fighting against each other.

It means we have two unique perspectives.

Would you like to reconnect?

I know I can always use more friends, but what I know more is my children need more allies. More people who understand and accept them as they are. You once accepted me for who I was. Many of you even helped build me up. You supported me through school with your friendship and kindness and faith in me. You supported me when I had my ups and downs and I became the person I am today because you were around.

I’m here if you have any questions.

It’s like dueling banjos over at Change.org and on Twitter. On the one side, you have the National Autism Association sending out regular tweets and getting “their side” to sign their petition. Their petition states that adding the diagnosis of Wandering to the ICD-9-CM will mean more research into it, create better responses when it happens and so forth. On the other side, you have the Autistic Self-Advocacy Network sending out regular tweets and getting “their side” to sign their petition. Their petition states that adding the diagnosis of Wandering to the ICD-9-CM will mean higher likeliness of seclusion and restraint in the name of treatment, rights being stripped from Autistics, especially autistic adults, and so on.

Being a proud supporter of ASAN, as well as having a chapter, you can guess which side I support. While I have many real life friends that are members or part of NAA, this is yet another area that we will have to agree to disagree (as there are numerous other areas that we do so as well). But yesterday I read a blog where it questions our sincerity in caring for the “lower functioning” “less able” on the Spectrum. So here I want to make it clear that I personally VERY much care.

Daniel is a wanderer. We have thought in the past that we may have to get an Autism dog to help curb that, but so far we have not needed to. We put a double deadbolt lock on our front door. We have had him walk out the front door, around the corner, and into a grocery store. We have had him wander into traffic. Believe me when I say I CARE about anything that has to do with children that wander. It is something we have to prepare for everywhere we go, any place we live or visit. Because of our due diligence, we haven’t had him escape in over a year now.

At the same time, I find it DEEPLY disturbing that anyone would want to put the diagnostic label of wandering onto anyone. Wandering is not a diagnosis, it is a behavior. If it is approved, this would be the first time I’ve EVER seen an Autistic behavior listed as a DIAGNOSIS. If this Autistic behavior is listed as a diagnosis, are there any other Autistic behaviors that would be listed next? To me, that alone makes it not worth it to do.

As well, I do not see how it can possibly help first responders when there are other measures (Mason Alert anyone?) that do not require a new DIAGNOSIS to achieve the same effect. Research to me is a moot point as the reason for wandering is as varied as any other behavioral response. Daniel is a wanderer when he’s very upset. He’ll take off running when he’s flustered or frustrated. Other times he’ll stomp off and then open the door and walk out. It has happened. This is because he’s flustered or frustrated.

What can we do to help him not wander? Recognize when he gets flustered or frustrated, help him communicate how he’s feeling, and help him calm down. Other children, some do it because of an attraction to something. If they don’t have a way to communicate, then sometimes they will wander off. The long or short of it, giving someone the ability to communicate their needs, understand their feelings, and then giving them the tools to support their needs is what needs to happen. Do you need a separate diagnosis for that?

If it’s about getting GPS tracking for your child, what are you doing to PREVENT wandering? There are two key pieces to wandering prevention and response. The GPS device is not nearly enough without a good proactive prevention plan.

What happens to these children that then become adults with this Wandering label? And do we need a diagnostic label BEFORE deciding what’s to happen? I know that they want to research it, but research should ALWAYS come before labeling. The end results of this label are just NOT clear and until they are, we SHOULD NOT diagnose thousands of children and adults.

I’m certain I should have shared this with my readers long before this, but we’ve been super busy over here. Tomorrow morning at 10am CST time, I’ll be on Autism Women’s Network‘s Blog Talk Radio broadcast with Shannon Rosa talking about our sons’ iPads.

As I’m sure most are aware, Daniel got his iPad for Christmas. Since then, he’s taken it every day to school. He uses it for his daily schedule, is token board and now for his social stories. It has allowed me to stay after school for Stephen’s extracurricular activities and know Daniel has something to stay occupied. We put Finding Nemo on it, so that works especially well.

He has started actively requesting me to download new stories via Read Me Stories. It’s an eBook app that allows a new eBook to be downloaded daily. Some of the stories he’s not all that interested in, but loves many of the others. We often catch him in the morning before school doing his math addition game.

He has also really fallen in love with YouTube. As his spelling gets better, he looks up and watches more videos. He also found a fish tank app where he can buy new fish and decorations. Then his games, which he has been GREAT at not playing while at school. It’s one of his two rules that he can recite, “No movies. No games.”

He also has been able to show his classmates a few things on it. They are of course fascinated by the fact that Daniel has an iPad, but they ask him questions and he answers. While I don’t think it’s made him any more friends, it has really opened up his communication with his classmates. It’s amazing what a simple device can do.

Next up is to buy him an iPad pen so he can start working on his writing skills. As nice as the writing programs are, they just don’t translate to the fine motor delay without the use of a pen. We gave one of the two USB dongles to the school for easy transfer of pictures, and kept the SD card one for ourselves. I’m just so glad they are willing to use it!

To find out more about Daniel and his iPad as well as Shannon Rosa’s son’s progress. Catch us tomorrow!