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.

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

Giving Others Your Attention and Respect

As I hung up the phone my stomach pulled in with anger rising up through my body. I am a mature person (most of the time) so I refrained from spewing it into the ear of the inconsiderate person on the other end of the receiver.

She just committed one of my all time most disliked pet peeves.It was a miscommunication, which is frustrating, but it wasn't just the misunderstanding it was the careless way it was delivered that makes me upset. This happens to me frequently when I talk to office associates, but none as often as doctor offices. I get it.  I really do.  They get so many calls a day, and I am certain that most people want to tell them their life story, never getting to the point.  I answer the phone for my husband's tree business, and out of what every customer tells me during the majority of the calls only about 25% of it is necessary information. This is with people inquiring about their trees, yards, and lawn sprinklers, so one can imagine that being times ten with people calling about a health related concern. So, I do empathize that they have to move through conversations quickly. I get that they probably get used to filtering through about 1/3 of what they hear to get the really necessary info. The thing is, I don't speak that way. I am on a need to know basis with everyone. If you filter though any of my words you're not gonna end up understanding any of what I am asking, or trying to state.

The conversation went like this:

Update- Beans and the School Investigation

In my last post I talked about the beginning of what has turned out to be a nightmare on so many levels. Today, that nightmare has gotten scarier.

I received the update from the school police officer who told me that he could not find any criminal conduct in his jurisdiction. He says he interviewed everyone, and no one is criminally liable for Bean's injuries.

I asked him then how does he explain them, and he just kept repeating that he couldn't find anyone to hold criminally liable. No one (obviously) owned up to it, and Beans can't tell us, so he says a crime hasn't been committed.  This makes about as much sense to me as finding a murder victim lying dead with a gunshot to the head, no gun around, and declaring it not a crime, because the victim can't tell anyone what happened, and the police don't know what happened.

Deeply Emotional & #Autistic- how my brain processes emotions

The other day when I was in an IEP meeting the assisted communication specialist was describing a new communication book that we would be using for Beans.  She described how we would point at the pictures in it to talk to him, and not just use it for him to request from us. In other words, it wouldn't really be PECs, and it wouldn't just be a one way conversation. Most of the people at the table were confused at what this meant, why it was this way, or how to use it.  The communication specialist was trying to explain it the best she could in her technical language as it was taught to her. She was over complicating it, and missing the mark. That's when I stepped in.

I explained to them that many people on the autism spectrum never think in words, and don't interpret the world in language. Some of us can learn it, and some of us can't.  Sometimes we think in pictures, sensations, or in a way that I can only describe as intuition, because there is no word for that. When we speak to my severely ASD son with words he most likely has to translate this to pictures, or to whatever way his brain interprets things.  On a good day, some of the message might make it through, depending on how familiar he is with those words in that order. On a bad day, or day where he might be low on energy none of the message will make it through.  It will be a garbled mess.  So, when we point at the pictures to speak to him, there is a conversation going on. He is not just using his book to ask for cake, or to go swimming. He is able to 'hear' us. I might tell him that I am wearing green today, and point at the color green. Or maybe, I'd like to tell him that I think it's hot outside. So many choices, but the idea is to build on receptive language in a way that he might grasp it better.

That got me to thinking about the subject of how I interpret the world,