Answers.... sort of.....

I saw Mason's psychiatrists today. (there are two) They see many things affecting Mason and we will begin implementing some stuff. I will be going back to see them in two weeks. These are some first steps:

- sleep - intensify Mason's bedtime routine with pic symbols. (pictures showing the sequence of the details of the bedtime routine) I don't know how that will help for 5 am.

- anxiety - I need to read and gather more information to understand it.

- emotional development - Mason had NO emotional development for the 5 years of intense seizures before his brain surgery. So now, with three years of reduced seizures, that part of his brain has had a chance to develop. ( the stuff you take for granted when your children are typical!)

- medication - apparently there is some link with omega 3 fatty acids helping with anxiety. I'm supposed to give him 3 grams per day. Risperidone - There is room to play with the dose, but comes with weight gain as a side effect. They are hoping to deal with his problems in such a way that we could perhaps take him off the Risperidone in 6 months or so.

- Autism?? - They are going to refer Mason to Sunny Hill Hospital in Vancouver to asses him for Autism. In the past, the seizures have been so overpowering that they masked anything else he could have. I kinda don't think they'll come back with an Autism diagnosis, but it would be nice to have the label! The label gets us more funding to help him.

- Behavioural Intervention - I have to keep records of his behaviours over the next couple of weeks. So when he has a 'tantrum' or explosion, is defiant or oppositional, I need to write down what happened before, what the behaviour looks like and what happens after (consequence). We will also be looking into Behavioural intervention.

The quick bite is that there will be a number of appointments coming up and significant changes in our routine at home. Yes I have routine, it may not look like a routine, or actually be routine, but it is! What will actually have to be implemented is more STRUCTURE!! UGH!!! Many of you may not understand this, but this will be exhausting for me. Bottom line is: Mason likes structure, I don't. Mason does well with structure, I don't. Maybe it's ME that needs a behavioural interventionist. I'm sure my dear husband would agree. Those of you who know me well, know that this will definitely stretch me. When Mason was on the Ketogenic Diet I had to be extremely structured for those 6 months. It took all my energy. So I'm not looking forward to that much structure again. At least we're starting with small bites like bedtime.

I needed to vent. I'll probably do it some more.......

Today's appointment has confirmed my suspicion that we are entering another "New Normal". This will be round 3. The first was when the seizures started, 8 1/2 years ago. It took me a year and a half to find that new" normal". The second time was after brain surgery. Mason changed drastically and I had to find my feet again, as his mom and in family dynamics, and what that all meant for our family. That time it only took 9 months to a year or so. Hopefully this next phase of life, involving psychiatric issues, will not take too long to adapt to.

ttfn!
ps did I tell you I don't much care for too much structure? There are a lot of things I take in stride. Structure = kicking and screaming.