Saturday, December 20, 2014

Beyond Behavioral- The necessity of medical tests for ANY behavioral changes in a nonverbal person

I may have briefly mentioned some of Beans violent meltdowns lately. I tend not to share a lot of the personal day to day happenings that I think may reflect negatively on my kids. Not because I think one should never talk about autism in a negative light, but because I feel there needs to be a limit to how much of my children's stories I share with the public.

Anyway, back to my point... He has been having pretty severe meltdowns several times a day that have been leaving the whole house exhausted. Obviously, the meds he was taking were no longer helping, so I took him off of them. His mood improved overall, but the meltdowns did not cease, even a little.

When I took him to the doctor about it the first question was if I wanted to try more meds.

That is never the right first question when dealing with a nonverbal autistic child. Really, any autistic child, but especially not one who is extremely limited in communication.

I asked if his lab work we had done several days ago was back. It was, but not even really considered. I had to ask for the lab to be done, and for it to be read.

Turned out his blood sugar levels were a little low, and his thyroid was high.

I am hypogylemic. When my sugar gets low I can get very irritable, and my body reacts as if it's in an emergency state, because it is. If I were nonverbal, and my sugar was low a good part of the time due to me not sensing my body's signals that tell me when, and what to eat I'd probably be punching everyone,and tearing the house apart all day, too.

The thing about it is if I had not insisted the doctor would not have checked. If I had taken back to his autism doctor she would have sent me right back to the behavior specialist who would have treated it all as if it were behavioral. There was no winning for him. He would have had to be put on a behavior plan that did not address his hunger, or blood sugar issues, or given more psych meds. Obviously, none of that would have helped, and he would have been left to suffer. The last time I called for advice I got the essence that they did not like that I didn't follow their advice. I didn't think most of what they had to offer was applicable. I have to do what is best for my child. That is when teachers, doctor's, and therapists get a bit miffed with me. They tend to view it as I am not taking their advice, but complaining that things aren't working for us, yet I won't accept their help.

We have to be vigilant in making sure that all medical issues are thoroughly investigated when our severely autistic loved ones are displaying alarming behavior(s). It's not easy to always get them to a doctor, and often procedures require them to be restrained, and whatnot, but it is necessary to be sure their medical needs are met. Much of the time any pain, or illness pushes an autistic's body to be at the verge of fight or flight mode. Beans seems to be sitting at a 9 (from a frustration measuring scale of 1-10) all the time. The slightest thing gone wrong sends him into a violent meltdown. To a behavior specialist (or most anyone else for that matter) this would look like a child who is spoiled, and needs to learn they just can't have what they want all the time. It's anything but. His actions told a story to me of a child in pain, or some other situation that was chronically getting worse.

Of course, we don't know if it is just about the blood sugar levels. He could be having acid reflux, or any other host of issues. We know that the one test suggests he may have issues with hypogycemia, and it seems to fit the behaviors i have been seeing. The only way we will know is by testing his blood sugar regularly, and seeing if a different diet doesn't improve his behavior.

This is where I ask you for advice! We cannot get a reading on him. It took 3 of us holding him down, and we still were unable to get the test completed. Is there somewhere else on the body besides the fingers that blood sugar can be measured? There is no way to get his finger pricked, and the blood gathered. Any advice appreciated! :)


Thursday, December 18, 2014

Tips on Selecting the Best Christmas Pet for Your Family

So, you want to buy your kid's, or family a pet for Christmas? It seems like a great idea for the best gift ever for your kids. What child doesn't think getting a puppy is like the best gift ever?

But, wait..... First let's consider a few things.

First off I will address the fact that many consider giving a  living animal as a gift to your child cheapens the value of the animal being a living thing, and reduces him/her to a toy. I see that point, and agree, but hear me out. There is no such thing as a free animal from rescue, or from anywhere. They all have fees associated with them, and require immunizations, and other things. Even a rescue dog is likely to cost upwards of a couple hundred by the time all is said, and done depending on the fees at your local shelter. For a lot of us that money needs to come from somewhere, so the gift fund is often where it comes from. The same as this year Christmas in our household is a little short (okay a lot) due to our dog getting sick, and requiring a lot of very expensive vet care. The money had to come from somewhere, so it came out of our Christmas budget. Merry Christmas to us. We still have a healthy dog.

Now that I've got that out of the way let's get back to the main point. Picking out a pet.

Friday, December 5, 2014

I'm Too Old For....

Today is my birthday. This last week I have been thinking back on my life, and how things are. I have a hard time believing that I am 36. It doesn't feel possible. When I was younger I always felt so mature for my age, but now as I age I feel my internal clock is moving in reverse. I feel like I am still in my twenties, and the 90's were just 10 years ago.

I was thinking about the things I like about my life, and the winding path that has taken me to where I am. I was also thinking about the things I am tired of, and done with. Things that I said I wanted to change a long time ago, but realized I never bothered with.  I began to compile a mental list in my mind about these things. Things I felt I was too old for, or done with.

I'm too old to keep being the victim. I know this one seems to be a bit strange to say, but hear me out. We've all had bad things happen to us. A lot of the things that happen to us when young is not our fault. We have no say in what kind of family we're born into. We have no say over a lot of the most painful of life's circumstances. They happen to us no matter who we are. We're all going to experience the loss of a loved one at some point in our lives, for example. However, there are so many things we do have control over. These are the situations that I am talking about when I say that I am too old to keep playing the part of the victim. I think what often happens is that many of us that came from dysfunctional families where we were not accepted, or cared for tend to subconsciously seek that pattern in other relationships. This is not to say that we want to keep feeling bad, but we are used to it. It's comfortable. It's the role we know, so we play it. I know this has been the case for me. I don't like being rejected, or never having my needs considered by others, yet it keeps happening in so many of my relationships. Somehow, I keep seeking this role out, hating it all the way.

I'm done with it.

I need to actively seek to better my life, and not blame others for my own problems. If I don't have enough help, or enough affection, or enough anything I need to problem solve on how to resolve this. I can't keep just expecting others to meet my needs without me being active in putting the process in place.

With that being said.....

I'm too old to be giving myself away. This one goes with the victim role I was talking about above.  I'm getting too old to keep getting into the role of people pleaser. I am getting too old to waste time on people that are only there to take advantage of me. I can't keep being taken by the same type of people, and expect my life to not feel drained.

Tuesday, November 25, 2014

The #Ferguson Decision- My Thoughts

Earlier today I posted one of my opinions about the Ferguson decision last night on my facebook page for my blog. To say that it was not well received would be an understatement. I ended up being so flummoxed, and out of time to properly explain my thoughts without a litany of swear words, and ranting, so I shut the page down for a couple hours. This was just my way of pausing the whole thing so I could think for a minute, and gain my emotional control. I needed to have a moment to write, and I have not had that time until now, so I am. I put my page back up, but have not been on it, so I can imagine it is quite possible that things have gotten worse, and I have lost 10 more members.

I thought about just deleting the thread that caused the issue to begin with. I thought about trying to clarify what I am trying to say on that thread. One of the reasons I am so mad is not at the people that disagree. I know the critics are there. I am more upset at the people that agree, but have opted to remain silent withholding comment, and even likes so as not to enter the conflict. I see them saying similar things on their private (read safe) pages, but will not engage in a wider arena due to being too afraid to get attacked.

I have opted not to go the safe route, so it's time for me to put on my big girl undies, and deal. This post is where I am going to offer my opinions about the Ferguson decision. You are welcome to address these points, and bring up any of your own (provided you're being respectful, and remaining on topic) in the comments section. I will not be returning to the thread that caused the issue, and commenting further there. I feel what I was trying to say has been twisted around, and that was a few hours ago. I can't imagine how out of hand it's gotten since.

First of all, I want to clear one thing up that seems to be so misunderstood. I am not angry that a cop 'got away with murder'. I am angry

Wednesday, November 19, 2014

Uneven- How my brain works

Last Wednesday I went before our state board of education to speak along with our state's disability rights center about the current lack of enforceable regulations regarding seclusion, and restraint complaints in our state. There are regulations in place, but no real way for the board to enforce them if a parent files a complaint. The complaint process is really a meaningless gesture the way it's all set up at the moment. I strongly feel that needs to change.

As passionate as I am about having strong laws that protect vulnerable children I almost as terrified of public speaking. I don't like being the center of attention, and I don't like speaking in front of groups of people. This combined with news cameras, and closed circuit television really was my idea of anxiety hell. It was so many of my fears rolled into one event.

I sat there listening until it was my turn. The people that went before me were better at public speaking, but not necessarily in getting to a point that makes sense, and is action oriented. You only have three minutes to speak. One needs to make their point quickly, buy effectively, as well. There needs to be a directive at the end of what, and or how you'd like to see your idea implemented into public education.

I heard some good ideas from educators, and parents. One in particular spoke about the need for movement breaks being implemented into the classroom environment, Those of us familiar with autism, and sensory processing disorder call these sensory breaks. All kids (and arguably adults, as well) need these breaks. It's important to our whole mind, and body system to give our bodies the opportunity to rebalance after sitting for a prolonged time. Children especially are not built for long periods of inactivity. I loved her idea, and that she did a demonstration. What I waited for, and didn't hear was how to implement this activity in every class period. What I waited for, and didn't hear was how there have been numerous studies recently about the need for more movement being incorporated in children's school days, or even what solutions she is specifically asking the board to implement.

I noticed that many were pretty good at speaking while looking at the board members, and really just having fluid body language that I didn't have. It was taking all I had to read without losing my place. I also thought I might throw up. My voice shook, but the words came out as I wrote them. I was told I did a great job, and my testimony seemed to really make a big impression. I was approached by a few of the board members who had questions, and who wanted to get my contact info.

It occurred to me as I was on my way home what impression I left on all those people in that room. A willowy,  thin, well dressed woman who was was well spoken, and capable. That was something, wasn't it? I'd never thought of myself that way, and never thought others did, but in this moment I saw a glimpse of what I can look like in a small sliver of time to others. Strong, and educated. Privileged, even. The only way I could get through the entire ordeal was to tell myself that I was just as good as anyone else there. I had just as much right to speak, and be heard as anyone. That was a novel thought to me. It truly was. I repeated it over, and over in my head as I awaited my turn to speak until I almost believed it.

What they couldn't know was that I could never have gone if my husband hadn't driven me from two hours away. Driving on the interstate to unfamiliar places is not something I can do. It may as well be located in outer space if it were left to me to get there from far away. It's not laziness, or just anxiety. It really is beyond my capability to drive that far away, and find my way around without getting lost, or so completely overwhelmed that I couldn't function. All the little steps of traveling seem so hard for me. I feel like a child. These are the times that I know I am not capable, and am not strong.

But, you know what? This is a big part of what autism is.

Thursday, November 13, 2014

Holding Grudges & Social Politics

The other day my husband and I were talking about the school situation with Beans last year, and how I was still angry at one of our friendly acquaintances (Beans bus driver) for not taking a stand for Beans. He said I was taking it too personally.

I said, " I don't think you're taking it personally enough!"

Here we have a very outgoing, friends with everyone, well known,very popular person from our town, and probably whole area. In an effort to not get messy she chose to pretty much not take a side, though I do feel like she leaned on the school's side a little. She seemed to always give them the benefit of the doubt. "Maybe he fell down?" She would pose. Or, "So and so's mom said that her daughter had GREAT results with that teacher." She totally ignored the fact that my child was sent home seriously injured from that classroom, and then thrown aside as the school attacked me, as if I was the one who was wrong for asking what happened. She chose to remain quiet, and supportive of my family so as not to ruffle feathers.

It was very personal.

Thursday, October 23, 2014

Is Less More When It Comes To Social Media?

I read an article several weeks ago about how we overuse social media, because of fear. The fear had to do with feeling like we're missing out. If we're not connected, and paying attention we might miss something, or be left out of an important social loop. Now, in all logic most of us know that 90% of social media is not really ever very important. This is not to say that some wonderful things haven't been done on social media. I don't mean to negate important social movements, charity events, and other such things that do very seriously impact our daily lives. We have to admit that funny animals videos, memes, and pictures of our meals are not exactly earth changing in, and of itself. However, many of us really fear that if we don't check in we just might not be in the loop, or involved in the latest trends. We might find ourselves left out of events, or without knowledge that everyone else will know, but us.

I thought that this didn't apply to me. I really don't care about most social practices. However, I couldn't overcome, or shake this feeling of irritation, and agitation that I would get when engaged in browsing Facebook, and Twitter. It seemed like it was not adding to, but taking away from my life. I finally came to the conclusion that I needed to change some of my online habits, because they clearly were not working for me.

But, what to change seemed to be the impossible question. I had to find the source of my upset. Was it the amount of time I spent online, or was it the content? Was it both?

Sunday, October 19, 2014

I Can

In my last entry,' Can depression be useful?' I brought up a few points about how depression could possibly be useful in some ways, such as really hyperfocused problem solving. For myself, my recent bout of depression seemed to really be an effective instigator in finding some solutions to long term issues that have been happening in my life. It seems that when something is a way for a long time we tend to not be able to see that it can be changed, even if the situation is negative. It's like we just resign to situations that don't work for us, even when we would like for them to be different out of habit. I had just resigned to certain things being less than optimal, because in my mind it was just the way things are. I swallowed my feelings about them, and moved on. That can only work for so long before mental health starts deteriorating in some cases where the situations are stressful.

The change in my mental state was a wake up call. It was what I needed to take stock of what mattered, and didn't. What was working, and what wasn't. It was the kick I needed to really reign in my energies, and make some changes that needed to be made.

As I pulled in my energies, and shut everything else down one theme quickly became clear in my life- I really was in desperate need of a break.

Thursday, October 16, 2014

Can #Depression Be Useful?

I read an article the other day about depression being an evolutionary trait that has been passed down by our ancestors, because it does harbor some usefulness. I read, and re-read it. I read it several times when I was depressed, and I just re-read it again in my current frame of mind, which is melancholy, but not what I would describe as depressed. I really wanted to let this idea sink in before really having much of an opinion on it.

In the article it talks about how when people are depressed they tend to shut down almost all other activities, and focus primarily on their problems. It's narrows down our focus, and reserves our energy for solving issues that triggered the depression in the first place. This is exactly what I was referring to in my last post. I was tired, and worn out so many issues being constantly tossed my way at once that I think my brain just needed to pull in it's energy to focus on what was the most important, which was/is taking care of my family. It was also a big, huge flashing warning that something in my life was not working. I needed to take a break from the distractions of others to really dismantle everything, and really understand what was happening. There are some people that have disorders that may indicate that depression just happens to them without warning, or reason, but most of us have reasons behind why we fall into depression. Most types of depression is triggered by an event, or lifestyle that our brain did not/cannot process in a healthy manner. Depression is a way for us to examine that trigger, and what behaviors it set forth that is not congruent with our life.

Some of the triggers are not things we can choose.

Thursday, October 9, 2014

Refilling My Reserves

There has always been something about gazing up at the night sky that captivates me. The smell of night, and the calm stillness pulls my thoughts into another world.It's one that transcends physical practicalities, and realities. It's a dimension of me that only I know, and wish so deeply that I could pull another person into it for just a moment to share in the richness. I wish I could express it in words with the depth in which I feel it. There are no words that describe how I feel sometimes.

As I step out into the intricate moonlight the blue hues in the sky remind me of every happy moment I had as a child. It's like every memory melds into one time, and one experience that is stored away in the recesses of my mind until something triggers it, and there I am as happy as I could ever be.