Saturday, 3 December 2011

I don't know.

This week has been wearying.
Rye's initial assessment was frustrating, distressing, illuminating.  Frustrating that yet another expert seems to believe home education means keeping one's child in a bubble, and refused to listen to anything that contridicted the belief.  Distressing because my fears were realised and it does appear that Rye may be Aspergers and also have a condition called Pathalogicial Demand Avoidance Syndrome; that contrariness I've on ocassion ranted about, well it's not just a 4yr old phase, it is a symptom of Rye feeling out of control and anxious.    He has been referred for a thorough assessment, which should happen in the next 6 months.  And there's the illumination too. 

PDA.  I'm not interested in the politics surrounding this condition; whether it is or not a part of Aspergers, whether one can have PDA and Aspergers together etc.  I don't care really, I just want to know how best to help my son - that other stuff is the politics of these conditions and let the experts argue it out.  All I want to know is how do we progress now, and then there's also that nothing has changed, yet everything has changed.

I am struggling with some of it; the biggy being love.  Does Rye understand love?  Is he capable of it or is it simply a tool for manipulation, for controlling his enviroment, me? 

The mind whirls, even when asleep it dream ponders; nothing is resolved. 
Don't be silly of course he loves you, and we all use "love" to manipulate to some degree.
Is Rye's degree so encompassing he doesn't feel love?
Doesn't change your love for him; he learns about love from you.
"superficial, superficial, superficial, superficial"  A word that means with no substance or meaning, of no emotional depth; and this is the word that is constantly used in reference to PDA.  My heart breaks a little bit more.  What will the future hold for my boy if he is incapable of love?

Is he incapable? All those hugs, "I love you mummmeeeee", the delight on his face when he sees me, racing into my arms, wanting to be so close to me he prefers to sleep in my bed, his delight he takes in showing me something he's acheived/done.... turning to me when he's hurt himself.  Trusting me to make it better.   His shinning eyes, his laughter and joy.  If those things are not a part of love, then what is? 

3 comments:

Button beautiful said...

They are all acts of love. Think you've answered your own question there hon. And if he loves you, he'll love others. Scary times for you, but trust in what you see and what you know to be true x.

Secret Sheep said...

We are also chasing a diagnosis of PDA. We haven't got any further than when we first brought up the subject in August with the paediatrician, and Sarah, aged 5, is in a referral unit for emotional and behavioural difficulties. There aren't many diagnosed cases of PDA, but as a teacher working in a lot of mainstream schools, I believe there are a lot more undiagnosed cases around. I shall watch for your updates with great interest. Thankyou for sharing.

Birka said...

I'm sorry you and Rye are going through this. About the love thing, I have an Aspie friend and I believe he does feel love, he just doesn't really understand the social complexities around love and human reactions. He also gets spirituality. Sound familiar? Rye will be fine and will probably be sharp as a razor with his intellect.