Isaac's behaviour therapist visited the other day and I spent most of the time telling her about Lily's behaviour so she decided that in our house she really needs to work out some sort of programme around all three of our children with Down syndrome.
Isaac's behaviour has improved immensely and I am realising more and more how great an impact medical issues especially pain have on behaviour. They can be a cause of attachment disorder - after all a child can't distinguish between pain caused by parents and that from reflux and stays in hospital can be major seperations.
It has made so much difference now that Isaac is in control of his own eating. I still worry quite a lot about his eating - especially his low fluid intake and lack of iron and calories. The whole essence of the Graz programme though is for me to back off and let him decide when and what to eat and it seems the more I can do this the better he is. I don't think the speech language therapists here have been trained along the same lines though - his SLT has just come up with more ideas about encouraging his eating and drinking with rewards, which does not fit at all with the Graz ideas.
Yesterday and today Isaac has started feeding himself with a spoon again (for the last few months he's just waited for us to spoon food into him) he hasn't pushed his dish onto the floor either , so maybe the difficult eating behaviours are beginning to ease. The behaviour therapist had suggested that we don't present him with situations that he finds difficult - like putting more than one piece of food in front of him or leaving his dish on the table - instead we operate within his comfort zone and let him choose when to progress (a lot like the Graz theory really). This all seems to be working for Isaac and he is a different child to that poor little boy who was in so much pain just before Christmas and would so easily hit out at people.
He can now tolerate a tiny amount of stress and lets people come quite close for a short while without hitting out. He's giving many more hugs and cuddles to Paul and I and is much happier all round. It has actually become a joy to watch him develop and busily move around playing with anything that catches his eye.
With Noah too, I'm having to change my natural ideas about discipline. I now accept that he rarely (much more rarely than most children) misbehaves on purpose - it is usually that he is overwhelmed by a situation, has misunderstood what's needed or is so caught up in something he wants to do that he can't be distracted from it. He also does not learn from consequences - all he remembers from them is that I (or his school teacher or whoever) was mean to him.
This means that we need to control his environment as much as possible, keeping it safe and calm with lots of routines and few unexpected changes and when things go wrong what works best is for me to maintain my calm (unfortunately this really goes against the grain for short-tempered me) try to calm him and lead him through what I need him to do.
This means I have to sometimes do things like put his shoes on for him or stand and wait while he walks along at his own pace- even when I feel people are watching thinking "What a spoilt little boy"
It is hard when almost all parenting ideas are based on children of normal intellect with normal brains (as well as DS, Noah has brain damage from oxygen lack at birth and infantile spasms) who want to please their parents and are quick to learn from consequences.
There are a few different kind of books though and I've just got one from amazon called connected parenting. I also like the explosive child and the connected child (meant for adopted children but still useful) although I can hardly say 'I like' as it challenges so many of my ideas 'I try to read with an open mind and learn from' Beyond consequences logic and control.
It is Lily who I'm finding the hardest to deal with at the moment -here's an example - On Monday we had a talk with her about how she didn't have enough money to go out with her friends to the movies but instead they could all come here for the afternoon. Then she isn't home or contactable by phone until more than two hours after I expected her. Turns out she phoned her boyfriend (once I was out the way and wouldn't overhear) to say her bedroom was too untidy for him to come round here so they should go to the movies instead. She spent all the money she knew she needed for the next day and then saw a playstation game she wanted so paid for that with her bank card.
I'm not sure why it's so hard with Lily, after all we are proud of her independence and yet are aware she has limitations. I somehow can't connect all this hard learned stuff from Noah to her - it seems as though now she's 21 we're just tired of disciplining her as a child. I expect her to behave as an adult, have some impulse control and maintain personal hygiene and time keeping because she needs to not just because we tell her too. All of these just don't seem to be possible for her. Sometimes too I think it is laziness on my part - I don't want to hold all he money and just give her what she needs each day, I don't want to have to remove the leads from her playstation each evening, I don't want to have to be out of bed myself to get her up each morning.
Sorry about the long moan, it shows how our kids always keep life interesting though and force me to keep reevaluating my ideas.