Another day of clinic visits yesterday for Isaac. It started with a hearing assessment for Isaac at 8.30am I realised this meant I wouldn't be able to get Noah to school and also that having Heidi present during the hearing assessment might no be a good idea - luckily Paul was here and able to get to work a little later bringing Heidi in with him.
The best bit was that I could say to Paul "I have to leave now, I have a meeting" which he often says to me leaving me with lots of children to organise.
I got to the hospital and Isaac had his assessment while Paul dealt with the children at home suddenly realising he didn't quite know how the morning routine went, the only minor issues were -
Lily nearly missing her bus as Paul didn't realise she had a watch that had stopped until she said "Is it 11.17 dad? When will it be 8.05?" at which point he realised it was 8.10 so she'd have to run
Heidi not having her hair done, (very fine black Maori hair that tangles everywhere) because Paul didn't realise I do her hair each morning
Noah taking his beautiful leather Armani coat (which I got from trade me) to school because dad just said "Get your coat" not "Get the old multicoloured jacket (that nobody is likely to want to steal)"
Anyway Isaac failed his hearing assessment as usual, his grommet has fallen out on one side and seems to be blocked on the other (although his ear does discharge on this side so it can't be totally blocked) and they suggested he gets hearing aides. One advantage of having more than one child with a disability is that we've been through this before with Lily, another is that as Isaac is under 18 unlike Lily he will get faster service and his hearing aides will be FREE!!
At 9.30 we had a meeting about the feeding clinic 'Kai time" it had said children weren't expected to attend but as Isaac was already at the hospital and as Heidi hasn't yet moved on as expected, I had to attend with two disruptive children. Heidi showed me she is now a typical 18month old (or maybe even a hyperactive 18 month old) when within the first ten minutes she had managed to climb into the therapists chair, find the breakable coffee cups, draw with pen on the walls, distribute all my handouts all over the floor and have a fight with Isaac.
We were asked to write down our goals for feeding clinic and then the therapist said we usually find most people have written "I want my child to eat fruit and veg."
This was the first inkling I had that our problems might be more extreme - my goals were "I'd like him to be able to take multiple swallows so he can learn to drink" and "I'd like him to be able to maintain or even gain weight" -Weighing 12kg at age 5 is way off the charts for typical children although it's still just on the 5th centile for children with DS
Then we were told "It's OK for your child to eat breakfast cereal in the evening" Well thank goodness for that as its the mainstay of Isaac's diet. The four mothers had to introduce ourselves and suddenly the difference in feeding issues became very obvious, the other children were 'picky eaters' not underweight, not unable to eat, never tube fed, not disabled, no history of muliple surgeries etc etc.
We were then told that Eating is essentially a learned motor behaviour and that 4-6% of the paediatric population with feeding problems will starve themselves.
This set off alarm bells as it is very based on the behavioural philosophy of feeding therapies rather than the self- motivation/regulation philosophy of Graz that I am trying so hard to believe in.
I am realising more and more that I am at the psychotherapy type side of the spectrum rather than the behavioural psychology side in much of my child rearing so I hope I am going to be able to cope with this clinic.
I guess really as a mum I will use whichever philosophy has the best result but I no longer believe that eating can just be learnt as a motor behaviour - the child needs to experience hunger so that some self-motivation come sin.
the real trouble is that if you want to get your child to eat by letting them get hungry you need a lot of support - if your therapists don't hold this view they're not able to offer such support.
143 days....Weird Goal, huh?
2 days ago