Frustrating few days in Asperia, culminating in yesterday when I felt like we were standing alone screaming into the ether. Our youngest Asperian has had a rough start to the school year and has only managed to complete a few school days. Actually, I call him an Asperian but last year he actually was not diagnosed with autism. This week was the follow up meeting where we asked the question "so what do we do to help him? He won't open up, he is struggling with relationships at school and he is angry, so very angry. His frustration builds and he shuts down so no-one can speak to him, and he has a habit of running out of class. Last year our psychologist told us about something called PDA -Pathalogical Demand Avoidance which seemed to tick a lot of boxes.
So Mumspie went to the meeting yesterday hoping that she would have some ideas and information to bring to a meeting at school with his new teachers. We know that he has been struggling at school and we know that his medication for ADHD isn't right at the moment. This was the drama post Christmas where his medication was keeping him up all night, after meeting with his paediatrician who told us first to lower the dosage and that it was likely not to be the medication that was keeping him up we tried giving it to him in the morning and hey presto! So we have ended up with him sleeping but him also being under-medicated. We have phoned everyday for a week to get our paediatrician to up the meds ("remember i am just a phone call away") and it took a pretty, shall we say, emotive email yesterday to finally get some movement (we have an appointment tomorrow).
Whilst also struggling to get hold of his psychologist and not getting much joy out of the organisation that gives out the diagnoses. We have found out that no-one there has even heard of PDA, even though it was included in the Autism Diagnosis information last October. At this point I am feeling like I am simultaneously screaming into the abyss and trying to work out how I can get my Asperians to book there melt downs and difficulties in a couple of months in advance so I can get the relevant appointments organised.
So yesterday he had the day off school and we were all reaching the end of our tether. Mumspie and I spent some time last night discussing what we should do to help him (and yelling at each other a bit). The answer we were given to the question"What do we do to help him?" was a little mealy mouthed to say the least. We were given a number of a psychologist who specialises in family relationships. While I don't doubt that this would be very useful to us I was hoping for something a little more immediate. By the time they have untangled the birds nest that is Asperia we are not really getting to the heart of youngest Aspie's difficulties. So our thoughts were to continue to investigate the idea of PDA that the psychologist talked about. Since our non diagnosis our question now has the important sub question "how are we going to pay for it?"
Today I had organised the day off work to attend a meeting at High School about oldest Aspie, who is doing fantastically by the way. I was so proud to sit in that meeting and listen to how well he is doing. He is playing downball with some friends at recess and lunch and finding ways to work with the teachers that he doesn't particularly like. A small step for most children, a giant leap for us in Asperia.
Before our High School meeting we went to the Doctors to get a mental health plan so youngest Aspy can keep seeing the psychologist. The doctor was fantastic. As we tried to condense our problems into the 15 minute allocated time our message was a little confused (much like this post). Although we shouldn't have worried as once the doc got going it was clear that the 15 minutes is only a guideline. So in the confusion he thought we wanted to get funding for the family psychology. When we corrected him and told him that we wanted to go with the psychologist and PDA he started banging on about how alternative therapies can be useful on some occasions. He looked at me very blankly and a little taken aback when I told him that PDA wasn't an alternative therapy it was part of the Autism Spectrum Disorder diagnosis. Back to screaming into the abyss.
So we go and drop the boy off the school. This was to say the least a struggle, it took both mumspie and I and his teacher to get him into class. Lots of tears and lots of stress for all of us. Interestingly it was an old friend of mine whose wise words helped to shift the situation to success. During our investigations into Pathological Demand Avoidance I have done a fair bit of self diagnosing and believe that this was responsible for much of my childhood frustration (there was a lot). In my early 20's I was working with my aforementioned friend and he told me when I was moaning about having to go to work that everything i did was my choice. This little bit of wisdom has eased many a situation for me and turned those 'demands' into choices. So I gave my youngest a choice "Go to school and enjoy extended ipad time when he got home, as well as a magnum (the gold standard of rewards here in Asperia) or go home now and hand in his ipad at the door. We stood back for a couple of minutes waiting for him to get up and take the second option. He didn't and from that point on things were a little easier for him. By a little I mean that we were taking baby steps to get into the classroom (not literally) but baby steps are better than nothing.
On the way into class we solved problems and he opened up to us about some of the things that were bothering him over the last couple of weeks. With the help of his teacher we solved the problems and dried his eyes, getting ever closer to our goal. The happy ending is that he had a good day while at school, well according to his teacher anyway. According to him it was 'alright.........I don't want to talk about it. After not being able to talk to the paediatrician about his medication we decided to give him a ritalin on top of his other stuff which also seemed to work well. He has been acutely anxious about the fact that his ADHD behaviours are drawing so much attention his way. So this is a major step forward for him, well, you know, baby step.
Over the last few days we have gone from stumbling around in the dark stepping on lego to some chinks of light breaking through to light our way. The most important of these is that youngest Aspie has spoken to us about one of the incidents at school and started to open up about some of the things that he is struggling with. Our main frustration has been how completely and totally he clams up whenever something happens. This means that we cannot, and the psychologist cannot deal with anything as we have no idea what is going on. We have a psychologist appointment and an appointment with the paediatrician coming up so hopefully we can break in more light and turn those baby steps into toddler steps. I would also like to add that we are far from alone with our screaming, we have the support of his school and friends around to scream with us.
Thanks for reading my blog again and indulging me in blurting out my thoughts and experiences in such a haphazard manner.
No comments:
Post a Comment