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: