Assume the position

Of late, that position in our house is lying face down on the floor crying- if you are Little Bug.  This move has been the most difficult for him by far.  He has begun to have some trouble with potty training. At one point, he had three accidents in roughly an hour.  His self injuring- specifically biting, hitting, and scratching himself- has increased in frequency.

Nick and I were kinda taken off guard by how challenging this has been for Little Bug.  Last time we moved, we had a week to do it in and although it was challenging, Little Bug was not as stressed.  This time we had over a month.  The house closed on December 9 and we didn't move until January 20, however the change has been tremendous.

I wish with all my heart there was a way to make this better.  We have included him in every step of the way- looking for houses, getting the paperwork signed, he painted and decorated his room, and helping with general tasks around the house.  We don't have any more suggestions.

Change is always there.

Last Friday, we had to find a new home for our dog, Frank. Little Bug’s melt downs have become too much for Frank and the dog has gotten more aggressive. Little Bug is heartbroken. We are now at day 11 since Frank and things seem like they are finally calming down.

For a while, we weren’t sure what we were going to do. All the behaviors that we are working on getting Little Bug to stop doing- lining things up, repetitive phrases, and self injuring- were in full force. Now he is at the acting out stage of things. He has been a holy terror and once he is in time out, he cries about Frank.

Unfortunately, there is always change. Soon, Nick will no longer be working. My schedule will be changing. School will be over. For good or bad, these changes will happen. Hopefully, these will be a little easier for him.

Creature of Habit

Little Bug is a creature of habit, routine, and structure. He likes everything to have a place. He is generally a mess maker who likes to have things clean at the end of the day. He is also big on lining things up- cars, cups, applesauce, whatever he can get his hands on. For him, order seems to be extremely calming and the act of creating order through lines is a way he calms himself down.
He hasn’t done this in a while. I was holding my breath, waiting to see if it had gone away for good.

I realized last night as we were playing, it has simply changed. Now, he needs to line things up and have the same order of events when playing. For example, he lines up his cars on his garage, then he has to send the cars down in a specific order- Lightening, Sally, and Thomas. I wasn’t paying attention and disrupted this cycle. I don’t think I have ever seen such a look on his face. He looked as though he had been hurt.

I have to admit, I am not sure what to do about this. In the grand scheme of things, I am not sure how big of a deal this is. When playing with his cars, does it really make a difference? I get that the root of the problem- scripted play and a strict adherence to order- is what matters. What I am unsure of, is how much do we change it?

Everyone goes on about curing Autism. I am not sure there needs to be a cure. Instead of a cure, I think we need to help people reach their highest potential and realize that there is place for diversity. This is a careful line and different for everyone. For Little Bug, we need to work on unprompted speech and sign. He may have 100 words, but he can only say 10 and sign 20 unprompted. Other than those, his speech is scripted. I agree that in that case, we need to intervene and get him to become unscripted in his speech.

When it comes to things like order, calming activities- “stimming”, etc. I am not sure how much it matters. We all have our little quirks and he may have more than others, but that doesn’t make it bad. It just means there is diversity and place for it in our world.

In other news, we received our paperwork to apply for a financial hardship in order to have Little Bug's OT and ST covered. We are crossing our fingers and hoping that it works out. It was kinda difficult to do- they wanted to know our medical expenses for the last 12 months. Which is like asking how many grains of sand are on the beach? Little Bug has had 1 surgery, 2 CT scans, 1 set of x rays, three visits to his surgeon at Children's hospital, three visits to the ER in Tacoma, several Urgent Care visits, and innumerable visits to his PCP. They wanted to know what we paid for them and what they actually cost. I didn't realize until yesterday how much we have spent on medical care- its astronomical! Wish us luck.

Off with his feet!

We had a bit of a stressful night last night. Little Bug had several meltdowns- which are specifically different from a temper tantrum in that he *can't* stop them. There isn't any distracting him from them and they can take an incredibly long time to go away. This is one of things that we are going to be working on with his therapists.

The huge problem of the night last night was his pajamas. We have only one car and that means that at 3:45 AM every morning I work, DN and Little Bug have to take me to work. So, I thought, lets make things easier on everyone and get him some footy pajamas. WRONG! He hardly slept last night because of the feet on his pajamas. He continuously woke up and would put his feet in the air and cry. Obviously, this is a *huge* sensory issue.

This means that his pajamas will be losing their feet. Hopefully, once the feet are removed things will go smoother.

Another issue Little Bug has is repetitive behaviour. It is compulsive and he cannot control it and should you interrupt the cycle, there will be hell to pay. However, there comes a line at when to let the behaviour continue and when to intervene. Last night, Little Bug was smashing his fingers repetitively in a DVD case- over and over and over again, taking turns on each hand. It was leaving red marks and no amount of saying "no!" or "owie!" would get through to him. So I took the DVD case away. He cried himself to sleep because he couldn't smash his fingers. It made my heart ache and all I could do was hold him and cry too.

There are times when I feel like what we do to shelter him- like not letting him smash his fingers or any other kind of self injuring- hurts him a lot more than the action. But there is a fine line as to when to intervene and when not to, I just don't think we have it figured out yet. I hope he knows that while we don't understand all his choices and he doesn't understand all of ours, all of our actions are done out of love for him.