Sunday, July 27, 2014

Anxiety and Routine Change- preparing for surgery

About four months ago I posted an entry titled 'Could it Be Irritable Bowel Syndrome?' I have a major update to that post.

I did follow those steps for awhile, and my stomach did not feel better. As a matter of fact, some of my issues got even worse. Thankfully, I have obtained insurance (Thanks Obama!) to actually see a doctor about what to do next.

It took me several visits to finally get my regular doc to hear what I was saying. I think this is not due to her inadequacy, but more leaning towards my failure to communicate in ways people understand. I am still trying to work out why I am not able to typically get people to listen, and respond to me when I need something. In this instance, I finally wrote down all of my symptoms, and brought them with me to the office for my appointment. That got immediate results. Upon hearing all of my symptoms my doctor said it sounds like I have endomentriosis. She scheduled me for a appointment with an OBGYN.

At that appointment he concurred that it sounded like endo, and he quickly got me scheduled for a surgical  procedure called laproscopy that would take pictures of my reproductive organs to see if endometriosis, or anything else was present.

The results were that I did indeed have a fair amount of endo. scarring, and a condition known as adenomyosis, or enlarged uterus. These were definitely the cause of so much of my stomach distress, which has worsened considerably the last few months. The doctors all assured me the only cure is a hysterectomy. Without one, the problem would likely continue to worsen until menopause. I am several years away from that, so I have opted to get the hysterectomy.

Friday, July 25, 2014

What If He Isn't Ready for Potty Training?

A couple weeks ago I decided to delve into the whole potty training thing again with Beans. We've been trying for awhile, but I decided to really dedicate myself to the endeavor, and try a new technique.

It didn't go well.

All the usual familiar thoughts started going through my head. I worried that I had not tried hard enough, or that others would think that I hadn't. All those sorts of anxiety laced imaginings that catch up to me while I am laying in bed trying to sleep.

But, then I remembered that I am trying to be a better mom by being kind to myself. The happier I am with my decisions the happier of a mom I can be. If I am always looking to others to define my worth I can never be sure of how I feel, or who I am. I'll forever trying to reach an imaginary, unattainable standard. I stood up to those negative thoughts.

I began to ask myself some tough questions about whether I really thought that I did give it a good effort, and if my instinct was that he wasn't ready. I felt that my answers were genuine. Giving up the potty training for now is what is best for him. There has been so many other times where I listened to other people's ideas on what was best for my kids, and in the instance of developmental types of things I was rarely wrong. My instincts (much like most parent's) were almost always correct. There have been times where I deeply regret not listening to my instincts, and letting other's dictate the situation. Some of those times have greatly added to my children's anxiety, because I know the situation was too overwhelming for them at that time, or just the wrong fit.

I did begin to reassure myself about all the cool new leaps he's made lately. In the last year Beans has been able to do so many new things. His developmental progress is nothing to be upset about.

Let's have a look at all new skills Beans has acquired recently.

Wednesday, July 16, 2014

Q&A- Meltdowns, Tantrums, and Shutdowns from an autistic perspective

I have received two very important questions regarding meltdowns. The first one was from a few weeks ago when I said I'd do some video type of blogging on my FB page, and the other was via email. I do think that I may be able to cover more material in a quicker way if I were to do a video, but I am not up to it at the moment for a variety of stress, and health related reasons. Sometimes, it is nice to use chatting as a way to convey a large quantity of info more efficiently, but sometimes I just can't get the words out verbally, so typing is what I have to do.

The first question I have received is:

"How do you tell the difference between a meltdown and a tantrum?"

I have thought long and hard about this one. The short, and quick answer is there isn't one.

Let me explain.

My philosophy is with kids in general is that they typically do the best with the skills they have. Every behavior is a way of communicating something. Today's world seems so hellbent on forcing children into complying. It seems that the better behaved one's kids are the more effective you are regarded by others as a parent. I find that this is erroneous, and based on a belief system that all kids are here to fit our molds, and not have days where they are human with their own needs. Plus, it's often that we are only judged on what people might see in public for a short time, which says virtually nothing about the way we conduct most of our lives behind the scenes.

What I find most often with autistic kids is that a tantrum almost always turns into a meltdown due to the overwhelming emotions that come with a meltdown. With both of my boys it seems that not getting something they wanted might spark a tantrum, but quickly moves into a meltdown where even if I were to give in to what they wanted initially it would not matter. They suddenly cannot be calmed by anything. I do see that in a desperate attempt to not even go there in the first place many parents of ASD kids will just not ever say no to begin with out of fear of the impending meltdown. That is also not a desirable way to deal with the situation. Kids need to be taught how to handle strong emotions when they arise, and they can't practice if they never get the chance.

Equally, as important... don't say no, then stick to it with veracity to prove your point if your kid cannot handle that situation. Sometimes, we don't know if they can handle it, or they want something that is impossible to give. If they're already seeming vulnerable I try not to even get into situations that might cause a tantrum/meltdown. Like, I know that Beans cannot handle walking past the pool while it is open, and not going. That is beyond his ability to comprehend, so I make sure to avoid the pool area while on foot. Once I say no to something I mean no, and will not go back, but I try to be sure I mean NO before I say it. If I can avoid certain situations that I don't think the boys have the emotional skills to handle I will, instead opting to work on building up to those challenging situations.

The very, very worst thing that one can do is not ever try little situations that might give a child the ability to be successful in handling the situation, thus they never learn how to manage their emotions. An example I see a lot is parents that say they never go out to eat, or virtually leave the house with their autistic child. This is not doing anyone any favors in the long run. This all or nothing thinking leaves the autistic child with no exposure to the outside world, and no opportunity to learn in small steps how to behave, and handle oneself in public.I know that it can be difficult, awkward, embarassing, and even unsafe if you have a runner, but if done in small enough steps it can be done. I take all of my kids with me to the grocery store, and to restaurants alone, and it is usually fine. We didn't get there overnight. This took years of work to get the point my boys can behave in places like restaurants,and other public places. I wrote a short tutorial about this HERE

Question two: What are shutdowns?

This question was a hard one to answer. I don't really know how to describe them, but I will try.


What do they look like:

Sunday, June 29, 2014

Helpful Guide to Understanding Meltdowns

One of the most common questions that I am asked is about meltdowns. It is understandably one of the biggest issues a person on the spectrum can face, and it can really make loved ones feel helpless. I always feel a little bit hesitant on giving much general advice. I find that there are about as many different types of meltdowns, as well as ways to help as there are autistic people. What works for one may not work for another, and vice versa. So, I thought that I could offer some general tips and ideas based off of what I have seen in my life. Some of these won't apply to you, or the autistic people you might know, but hopefully a few will be able to at least provide a little insight.

So, what is a meltdown?

This questions jumps right to the center of what this entry is about. It's also one that is really hard to answer. I don't know how to describe something that has no physical form. It's almost like trying describe what an emotion is. I just can't quite find the right words to convey the depth of a meltdown, and it's many, many facets.

I think a common misconception is that there is only one kind of meltdown. This is what makes it seem so elusive to onlookers who want desperately to problem solve when their autistic child/loved one is in the throes of what they think is a meltdown. What worked last time might not work this time, and a trigger that seemed to be mild last Thursday might be too much today. There's different types of meltdowns, as well as different combinations of things that tend to set one off at different times, and believe it or not is even unpredictable to many of us adults who are very self aware.

I can list a few different general types, and triggers so that you might be able to gather some info from here to possibly compare to your own situation. One thing that I heard once from a behavior specialist is that a meltdown is like a seizure in that you cannot stop one once it's started. You can make one worse, and you can prolong it's effects, but once the brain has reached that tipping point it is over. You can't unspill the overload, which is is to me what a meltdown is. It is an acute reaction to too much happening all at once, in which the brain has no way to cope, or contain. The excess must go somewhere. From what I can gather there are three main categories of meltdowns. Sensory, Executive functioning mishaps, and Emotional.

The different types of meltdowns:

Wednesday, June 25, 2014

Wife and Mother of Two Unable to Express Affection on Social Media [Satire]

*********This blog entry is satire, and intended for entertainment purposes only.
 I know this is not my usual writing style, but it is truly how I think. I really enjoy satire comedy, and would like to incorporate some of this natural thinking style into my blog writing. I hope you enjoy it, but if not that's okay, too. All that I ask is for you to NOT leave comments if you are not fully understanding what satire means. Thank you.************
 

-Local mother, Jane Smith scrolls past a cheerful graphic on her Facebook wall that says "Share if you love your daughter" leaving room for doubt in her family that she does indeed love her 10 year old daughter Sarah.

"She always scrolls right past them, and never shares." says Sarah tearfully.

Jane admits that what Sarah says is true. She maintains that she doesn't share graphics about having the 'best son ever', either. "It's just that I find that amount of sharing to be nonsensical" she explains.

Jane's husband, Bob also finds himself wallowing in doubt about his wife's true feelings for him. "While other wives share their affections openly via social media about their husbands Jane is always suspiciously quiet about her personal life when posting on social media sites."

"Bob is not incorrect." says relationship guru Dr. Fruad. "We often see many women posting via their mobile devices how much they love their husband to Twitter, and Facebook right from the couch where they both are sitting. If a man wants to know how his wife feels about him he can usually tell by checking her timeline." he explains.

Tuesday, June 10, 2014

Sensory Solutions Part 3- Auditory

In the first two sensory solutions posts I discussed the different types of sensory input and began to break down the different ones by category starting with visual senses first.

In this post I would like to discuss the sense of auditory as it relates to someone with sensory processing issues.

I feel like this topic is one of a very wide terrain. It will be a difficult task to cover every auditory type of issue one might be prone to with sensory processing issues, and autism. I will try to touch on all of the ones that I know about, and have heard of in this post.

From what I have seen auditory issues are the most frequent of all sensory issues to affect people on the spectrum in a way that really alters our life. I have found this to apply to those diagnosed with Asperger's to those with profound autism. We all tend to be able to relate to each other in the way of auditory stimuli wreaks havoc on our lives at times.

As with all sensory issues those auditory in nature can be hypo and hyper sensitive.  With auditory issues I find that there is certain things that bother each person that would make them hyper, and hypo sensitive, as well as have what is known as Auditory Processing Disorder- which I will cover in greater detail later in this article.

Hypersensitivity to noise

What are some the things that can cause someone with auditory processing issues to be sensitive to noise?

* Children yelling/babies crying.
* Dogs barking.
* Horns and sirens
* Motors
* White noise- such as fans blowing, water running
* Chewing noises
* Breathing/snoring noises
* Any repetitive banging, ticking, or clicking
* Lots of people talking at once
* High pitched noises- some of which others seem to not even notice
* Toilets flushing
* Phones ringing
* Other people's music
* Voices in general can cause overload 
* Any noise that is unexpected 
* Any noise that is above the level of a quiet conversation has the potential to be too much for someone with an auditory processing issue.

What are some of the things that can cause hypo sensitivity to noise?

Sunday, June 1, 2014

Altruistic and Autistic- Coexisting and breaking stereotypes

I know there is a TON of stuff out there about how us autistics really do have empathy, and all that. I don't have a long windy argument to support that argument.

Instead, what I have is the photo below.

The worksheet that is pictured there is one that I filled out when I was in 4th grade. As I have mentioned before, I have a formal diagnosis of Asperger Syndrome, yet even as a young 10 year old child I held very strong values, and ethics about helping my neighbor.

I set the value of wanting to help others above fame, admiration, and power. This was not the outcome of sophisticated behavior, or social skills training. These things did not exist for me people like me back then. I wanted to help others, because that is who I am, and what I am naturally driven to do. I didn't need to be coached to have a strong need to treat others with kindness. I recognized their humanity as important, and I wanted to lift the well being of everyone up. Sometimes, my way of going about this may have needed tweaking, and others I might have missed the mark, but empathy was always there. I have always cared, and extended efforts to help others anytime I had the opportunity.

What examples do you have the support autism and altruism coexisting within the same person at the same time naturally?

Also, as a side talking point..... Do you think that we should have more worksheets like this one in school nowadays?  It's been about 25 yrs since this was filled out by my class. I wonder if these types of activities get kids thinking about values, and behaviors further supporting thinking about how they treat others. I haven't ever seen my kids bring home worksheets that support this type of thinking exercises.


B

Saturday, May 17, 2014

Over Exercising?

One of my biggest personality traits that really stands out is my obsessive, go big or go home, get the job done with perfect execution type of behavior. When I get on a new thing I get on it to an extreme. It doesn't matter if that is baking, learning a new subject, or fitness. I really pour my soul into pretty much all that I do. If it becomes apparent to me that I cannot succeed at something I typically will bow out sooner rather than later, and move onto something that suits me better. There is nothing wrong with this type of perfectionism, per se'. It's pretty common for autistics to be this way, and from what I have noticed ladies on the spectrum are even more driven to be a perfectionist than the guys.

However, there are some drawbacks to this trait. It can be harmful to our physical, and mental well being if we strive so hard to be our best that we lose sight of the parameters of health. If we sacrifice our self esteem, and our physical selves for an unattainable goal we will undoubtedly suffer.

Recently, my husband mentioned that he felt that I was training to hard. I ignored him at first, but then he started really asking questions. I felt harassed by his apparent lack of knowledge on what constitutes a good fitness routine. I resented his intrusion. To ease the tension I began to hide my exercise sessions. During the day while he was at work I would do one or so, and then in the evening I would do another. He'd only see one, and assume I was only doing that one session. Sometimes, I'd not do an evening session if the afternoon one was sufficient.

As with most things in life, if you have to hide your activities to avoid scrutiny from loved ones, then it may be time to assess whether your activities are as healthy as we are trying to convince ourselves they are. All the excuses were there. I thought he just didn't understand my level of dedication, what being healthy was really about, and what healthy exercise guidelines were. My relationship with exercise was just misunderstood, I thought.

Then, I began to have symptoms I couldn't ignore. I Googled them. What I found was shocking. The screen lit up with articles about training too hard, too much, and over exercising. Could it be? Was my husband actually....right?

Well, it turns out he is sometimes, and this one was one of them.

I thought about linking articles to this entry, but instead I decided to try to just outline the symptoms that I had/have, since I have no way of verifying the info from other articles. I figured that you all could Google the subject further if you would like more info. That way I am only sharing what I know to be true for me, and not spreading false truths.





Monday, May 12, 2014

Thoughts From the Unlovable Alien

The air outside is cloudy, cool and in stark contrast to the hot, windy days we've had recently. I hear the rain drop on the windows, and roof much like the tears in my lap. It's one of those days. If you're looking for warm , and fuzzy... this post isn't going to fulfill that.

It's happened again. I have been lied to. Betrayed, and forsaken.

At first there was anger, then the inevitable piecing out of what would be the logical way to handle the situation. I figured that out, and decided it was what was to be done. For a few days this was okay. Then that little voice inside of me got harder and harder to silence. It's the sound of my inner child, or whatever you want to call it. She began as an essence, but moved to a whisper. I escape her by daydreaming of times where things were better. There's no better way to soothe a current hurt than to get nostalgic. Suddenly, I am 15 again, and the possibilities are endless. I can remember when I felt I was something, and that I mattered. I don't search for a specific memory as much as how specific feeling. If I can at least artificially feel loved, and important than I can figure out how to get through another day. If I can convince myself that I am an okay person then I can cope, just one more day. That usually works for small bouts of loneliness, or rejections, but big ones? I just can't escape inside of my own head enough to alleviate that much sadness.

So, the little voice grows louder. Her mumbles begin to get more audible. "....doesn't like you..." and "..Your fault"... and more cynical statements begin surfacing. With it are the images of memories, and times long repressed to the back of my mind.

I get busy. I try to drown her out with tasks. I really don't have time for all this negativity. I have stuff to do! My house gets cleaner, as I fall apart inside. Perfection is soothing to me, as I strive to have the best of everything. Obsessive would be a good word to describe this phase of mental deterioration. To others it looks like I am just getting things done. I am. Sometimes, this motivation is all I need to snap back to feeling good again. However, if it isn't.... it is pretty much the last stop on the coping train.

If not, then what?

Tuesday, April 29, 2014

Give Me a Sign- Expressions of PosAutivity: #AutismPositivity2014

I have been thinking about doing a Autism Positivity blog post entry  for a few days. I kept drawing a blank on what to write about, so I was unsure if I would participate. Then, I read last night that this year's suggested theme is communication, and expression. This new info reminded me of a post that I have been thinking about writing for awhile. I hesitated, because I don't know if many will think it's positive. I don't know how it will be received by others in the autism community, especially those that don't typically follow my blog who don't know our story. Then, I remembered how much I tend to care about people who don't know my story who want to lend judgment on how I should express myself. I have no cares to give about those opinions. While speaking about the themes being self expression,and communication style of people with autism I can safely say this blog is how I express so much of my inner self. The people that follow me here know me more authentically than anyone I know in real life who has never read my writing (save maybe a couple people), so I do myself a disservice when I censor my writing to fit what what I think others want to read.

As most of you know I have a 10 year old profoundly autistic son named Beans. He is nonverbal. For years, the school, and private speech tried to teach him to use Picture Communication Symbols, or PECs for short. We tried the symbols, the actual pictures, and even objects. We tried devices, and differing methods all the while Beans became more, and more irate while virtually not improving in any of the methods, at all. As we all know, behavior is communication. It didn't take me very long to decipher what he was upset about. Life is confusing, and overwhelming for him as it is, but imagine being asked to participate in an activity for 7 years that made no sense to you, everyday. You were asked to point at random pictures, and not allowed to do anything until you did. This activity would follow you from eating to playing. Always that book of pictures. I often wondered what they looked like to him. Were they just colorful pieces of laminated paper? How did he feel when he saw that book come out day after day? He melted down more frequently, and his communication had not improved any measurable amount in that seven years. We had some of the best service providers in the country teaching him to use the book in private speech, and public school. No, to little improvement was a clear indication this was not working for him. The meltdowns from frustration was a clear sign to me that he does not learn this way.

I didn't know the struggle that lay ahead of me in getting professionals on board to use another method. It was such a shocking, and sobering experience to me to be completely shot down when