What is Most Important

Nathan continues with cycling into rages and self injury. We are so disappointed, because we had seen improvement with the new medication. Unfortunately, that lasted only 4 days. Now he is not AS bad, but he is not good.

I have so much trouble coping with my reaction to him. I have guilt on all fronts. I feel terrible when I'm here. I don't want to come home from work. I'm having to take off work to get things done with the other boys (orthodontists, doctors, etc.) because Paul can't handle all 3 at a doctor's office and there's no one who will watch Nathan right now. I feel so guilty about that. I hate where my life is at right now. I almost feel like I am watching a child with cancer who will never die but never be cured. There seems to be no end to his suffering.

His problems touch every part of our lives. Isaac has to hide his toys from him, and he has learned to stay away from him when he's raging. Sam is doing poorly in school, but it is very difficult to spend much time studying with him if I am at work and Paul is coping with meltdowns and is mainly in survival mode. I am feeling guilty about all the time I take off from work. Paul...Paul is here all day, every day. His life is a stream of rages and keeping Nathan safe from himself.

We spend a lot of time talking about him. What is going on? Is there any hope that things will improve significantly?

Tonight I was talking to Paul about my feelings. I am not depressed like I have been in the past. I feel helpless, pulled by a force stronger than myself. I have so much guilt. Just a little bit of anger. Which is a lot better than a year ago when I raged against family who chose to be ignorant to our situation and see their own needs and commitments as so much more important than ours. I wondered, am I over-reacting? Do I need meds?

"No" he told me. "Our life sucks. Imagine if someone else were to tell you that they come home daily to a child screaming, crying, hurting themselves. You would say 'wow, that is terrible.' That is our life. It does suck right now."

Nice to be validated, isn't it?

So, I thought, we don't have much control over this. We will try the medications recommended. And when they don't work, we will try new ones. Until, hopefully, something does work.

So what can we work on? What is most important? He enjoys academics-math, handwriting, map skills. These are nice, but not important in daily functioning. He still needs a reliable form of communication. His voice is not reliable. Sometimes it doesn't work. Sometimes it says things that are not what he wants, but an echo he can't get out of his head. And when he gets something he asked for but doesn't want he flies into another rage.

Communication is most important. Reliable communication. So we will start in on the Proloquo2Go again. Make it the centerpiece of homeschooling. Approach it like we approached PECS so many years ago with Sam. Go with highly desirable items and have him request them again and again.

I can't control the rages and self-injury. But I can keep pushing his skills forward whenever I have his attention. In between the pain, there will be progress.

And communication is the most important.


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