Saturday, November 26, 2011
One of the things I see my son struggling with is social interpretations. He thinks he means one thing, while everyone else sees his activity as something else.
This morning a lesson came to being when he was caught tormenting the cats with a roll of wrapping paper. He thought he was "just playing". The cats didn't agree. So, I devised a lesson to today to help him how things are socially interpreted.
Interpretation is how we understand something we see or hear. Because of varying points of view, interpretation can be very broad and different from person to person.
For this lesson I made four flash cards and asked him what he saw of each one.
First, (you can click for larger view) the top photo. He said someone was punching someone else. I asked him, what the thoughts might be of the two people. What if the person doing the punching really thinks he's "just playing". Does the person taking that punch feel the same way? And what if they are both "playing"? Will people who see them think they are playing? Things we see in social settings are at the mercy of interpretation. It's why we have to be careful of the things we do.
Now take a look at this picture. It looks like someone is crying. Why do people cry? Are they hurt or sad? That's the automatic thought and usually true. But what if they are crying because they're happy? What if they just laughed so hard, they couldn't help but cry? What if they just have allergies and it makes their eyes tear up? It's hard to judge from just a tear in the eye, but this demonstrates how many ways something as simple as a tear can be interpreted. Of course, the best thing to do is ask why they're crying, but that isn't the lesson here.
Next we see a person running. Why do people run? Usually it's for two reasons; to get away or to get to a place. People are either running from something or to something. Many times it's both. So why is he running? Is he in trouble, late for class or scared? There are many interpretations that can be made from the sight of someone running down the street. Mind you, I'm not adding anything else to the scene of the person running on purpose. Try to add interpretations only to the act of the person running. How many can you come up with?
Finally we see a person pointing and laughing. The second person is frowning. What are their interpretations? Is the person laughing being cruel? Maybe. Maybe they just thought something was honestly funny. The other person likely doesn't understand and may accidentally have their feelings hurt as a result. And how many ways can this scene be interpreted by a third person? Finally, can interpretations get us into trouble?
Our discussion was very thought provoking and my son appeared to get a lot out of it. Could your child use some interpretation advice?
Friday, November 18, 2011
So, yesterday I made the hundred mile drive to Shreveport to see a neurologist about my MRI. It was a good visit. She listened to me, answered my questions, and formed a diagnosis plan.
We did a big blood draw for an auto-immune panel. This way, if it's not MS, we can see if it might be one of the other auto-immune diseases. It's not easy to diagnose these on just an MRI after all.
I will be scheduled for a new MRI for after the holiday to see if anything has changed. If nothing has changed, it's not likely MS. If it has changed, then it may be MS. If it's not conclusive a lumbar puncture is the next step.
I really felt good about this trip. I wasn't treated like it was all in my head or that I was a waste of time. I didn't feel like I was the next project on the conveyor belt. That alone was enough to make me feel like this trip was a step forward. So, the fact that this takes time and multiple tests is easier to accept.
Thursday, November 10, 2011
If you google the two conditions together you will see an interesting trend of articles and studies. Those studies are mostly about parents with MS having children with autism. This suggests a link they are currently studying, but have no distinct answers on yet.
My own conditions have been getting progressively worse over the years. I fatigue faster, lose coordination a lot, have trouble forming words and speaking, and I have increasing random tremors that are more like lightning jolts. Autism isn't particularly know for being a progressive condition. So what's the difference?
I found this information about the nerve effects of the two conditions:
MS is a degeneration of protective layers around nerve endings, eventually leading to progressive nerve damage.
Autism is a developmental disorder of the nerves themselves.
So, from those two descriptions, it's entirely possible to start out with Aspergers or some other form of autism and develop MS later on. Like Autism, MS can have profusely different effects on each person. It's another broad spectrum with a hundred million combinations.
In any case, I am sitting on a possible MS diagnosis. That's why I'm researching it to learn what the possibilities are and what I can do about it. No, I can't stop it from happening, but knowledge is power. If I have to live with this condition, I want to know as much about it as possible. I see the neurologist this month.
I find the connection thought provoking to say the least. There are connections being drawn to Alzheimer's and Parkinson's as well. Is there a common root to link them all? If so, how do you find it? It must be like finding a specific needle in a stack of needles as big as the proverbial haystack.
Tuesday, November 1, 2011
It's tough to be a parent of a special needs child. It's even tougher to come in as a step-parent to a special needs child. I'm going to sing some praises today and I hope this also serves as useful information to you who read this.
The step-parent is the one who is coming in, late in the story of your child and has to take a major crash course in your child's needs. They weren't there from the beginning like you. They didn't have to deal with diagnosis or all the research you've taken years to do. They are, for lack of a better term, taking "baptism by fire". Statistics aren't kind to these relationships either.
If your child is lucky enough to have a step-parent like my son does, you'd know they deserve a great deal of praise. My Lisa deserves just that.
Not only has she tolerated a great deal with him, she's stepped up to bat, rolled up her sleeves, spit on her palms and gotten to work on the matter. She's been a great partner. She catches things I miss and taken her position as a step-parent very seriously.
She was the one who insisted that our boy needs a dog. Even with his fear of dogs, she found one that now plays and sleeps with him. She helps him with his homework more often than I do (even though he tests her by giving up easily or throwing fits). She pays him a small allowance for a clean room once a week. She easily pays for half of his rewards for good days, weeks or months. For that matter she printed him a brochure reward menu with his picture on it. Then she has a hard time sleeping from time to time with worry that she's doing okay with him.
We need to remember what our step-parents put up with. The best step-parents are the ones who are able to be "parents" in spite of the challenges. This is especially true in special needs families.
When it comes to being a SP of a special needs child, you have to be prepared to get your hands dirty. It's hard and there's a lot to tolerate. For many it's too much. And it can be tough on in-laws too, no doubt (just to mention).
So what do we do, that makes a success of our story?
Rules: We are on the same page with the rules and back each other up on them. If she sends him to his room for something he did, I back it up. If we don't agree on a discipline, we discuss it. We don't let him play us against each other.
Activities: We are all involved on this. She's constantly on the look out for activities he might enjoy as rewards or just in general.
Family Discussions: We talk about important issues together and he is included.
Respite: Uh oh. I have to admit, this is where our current difficulty lies. You must have respite and a break from time to time. You need to go out on dates with your partner and let someone else help with the kids. I'm sure, though, many of you can sound off here and show that you have a hard time with this too. The realities of child care will likely be my next blog. It's hard for several reasons. Yet, it is oh so needed and important. I can tell you that because we don't have it right now. We feel the pain and know what it's like.
Step-parents, should also start things out slowly. Get to know the child and spend time with them. Don't move into disciplinarian right away. That comes with time if at all. Parents should also never allow disrespect of a step-parent. Learn the needs of the child and take up a teamwork approach in fulfilling those needs. With us, my word is the final one on what is done with my son. However, I have great respect for her input and we've done a lot to help him through various difficulties.
United you stand, divided you fall. It's hard work, but also very rewarding. Our kids have their best chances (even when it looks bleak) by what we do with them now. I see it in my home, and hopefully many of you do in yours.