Technological challenges!

I'm hoping I've done this correctly and that my blog has transferred properly!

Got to love that technology...

Does parental expertise get recognition by professionals?

Well, I wonder...

This wee musing has been sparked off by a combination of life events and discussions elsewhere in my universe.

 I was talking to someone recently who described a child well settled in good routines and the book the mother had used to help this along. I commented she was really lucky she had a child which actually came with a manual! Certainly none of mine ever followed ANY kind of child wrangling manual.
Then I was watching Super Nanny last night - something I rarely do as I wind up yelling at the tv and wishing they'd put together a programme of all the out-takes and the families who were rejected from the program because they were too hard...
Anyway - it struck me that there was obvious (this is a tv program after all) recognition of where the parents' skills were at, what caused them to get there and what the kids' histories and needs were - just a 'one-size-fits-all naughty chair approach'.

We've had some interesting discussions lately with N's psych about his eating and how to tackle it - she and W's therapist who has been helping were heading off on a track which we didn't feel was appropriate for the child, family or the actual issues in the situation, and so had to write a careful letter saying so and re-directing the track. We finished up the letter stressing the need for teamwork, that we need her psych training and skills but we need to combine it with our specialist knowledge of our particular flavour of child, their history and factors coming into play, and also our prior experience of having dealt with feeding problems for nearly 12 years over 3 kids, 2 of whom are now eaters.

She is happy to work with us and has dropped the path she was going down but still, there is no overt recognition that we've actually managed to 'fix' two kids ourselves and so actually know a thing or two about approaches to feeding issues. Of course, whether you actually count T as a success yet is probably a moot point as he is still using the tube to a significant degree and the results of a recent trial off were a spectacular flop - but it's a night and day experience with him now compared to even 6 months ago so we are making continual progress.

One of the things that the first psych did that really made an impression on me was telling us how well we'd managed with all the situations we've been thrown into. T's Speech therapist said the last time he was here that he never underestimates parental assessment and knowledge because the parents know the kid best.

I've had my ingenuity in problemsolving recognised from time to time by a professional but really it's usually a kids of 'All kids do...' from specialists and no acknowledgment when I say been there, done that, y happened not x. No one knows the true flavour of your kid like the parent, not even a teacher when they are off at school - because we see the tears, tantrums and stresses resulting from the school day that they don't - home is safe to do that, school isn't! The spelling test mark often doesn't show the true picture of the struggles to get there.

I knew the latest experiment with T was going to crash and burn but we did it anyway. I know from experience that you can starve any of my kids into eating and you have been able to. Apart from that T seems to have this weird situation where he has to eat a certain amount first otherwise he just can't/won't eat at all. Like if there isn't quite enough fuel in the engine then the whole engine seizes and stops. Just won't go any more. Not even for something so 'instinctive' as eating. The specialist's response was along the lines of 'you want him off the tube don't you?'

That response ignores not only past parental experience and knowledge of my flavour of child but also of the path we have travelled so far. Yes, absolutely we want him off the tube - so does he. But we have had such a long, hard and nerve shattering journey to get to this point that we are also happy to be guided by the child and take our time rather than rush, push, possibly create negatives which needn't have been there - and go back to the same old fight we've left behind - all to keep a specialist happy.
And again - you can't tell me that upping the emotional stress around food, going back to counting each bite and all that coaxing, encouraging and later yelling and drama doesn't cause problems - because W and N have been and are travelling that particular route.

People talk of a team of specialists and usually list several '-ologists' or '-ian' as part of that team. We have a team of a GP and a therapist of some branch for W.
We have a GP, paediatrician, dietician and psychologist for N.
We have a GP, paediatrician, dietician and Speech therapist for T.
Where are the parents in the list? What standing do they get given in all the considerations? What about their 'years' for training in this specific child?
When I do a contact list for one of the kids and list all the people involved in that kid's care and their contact details I always put OUR contact details at the top.
Parents get left out of the loop, their input and experience disregarded, yet when it really comes down to it - the doctors and specialists left, the kid ages out of their care, the specific problem is 'fixed' and the kid is discharged. Where is the line where the parent gets to sign off?
We carry the consequences for the child and for ourselves for ever. Our role is one that changes but the child never 'ages out' of our specialist care.

I regard myself as a professional mother.
That IS my job.
I have the skills, experience and ability to fulfill my part of the team.
Can the team let me in as a full professional too?

Just can't escape that treadmill...

Ah yes, it feels like a treadmill constantly running just too fast to be comfortable, that you are always just that little bit out of breath more than feels okay, and that you always feel like you just might trip suddenly and then it's all over rover.

Today was a typical example - N was a nightmare - among other things does anyone know how to get black felt tip pen out of towels and flannels? He's soaked a pen in water - 4 containers to be precise - and then got them all over the bathroom - all while actively not doing his schoolwork all morning. Trust me, this is something he's got down to a fine art - and is what will get him sent back to school one day, any old school, some days I feel like I just don't care any more, can't care any more.

He indulged in some antics today as well which literally reduced W to rocking in a corner and still had him so stressed this evening he was in tears.

So later today I drop various kids off to various destinations and take T to see the Wiggles live in concert (a children's entertainment group). I have just one kid with me, one who can sit still and behave and isn't freaked by the darkness, loud sound or proximity of lots of people - and I can pretend to be an ordinary mum doing a fun thing with her ordinary kid.
Such fun - and actually quite relaxing. He even complained of being hungry so I took him to McDonalds for some fries - and he ate the lot! So far so good - not even the eating bogeyman hanging over me!

But the treadmill starts again as soon as I get home. No more pretending normalacy, not from the second I walk in the door.


There are 2 messages on the answerphone - one from T's speech therapist setting up his next appointment, and one from W's therapist checking details about bringing in someone else who is doing work on emotion control. I check the emails and there's one from N's paed giving a list of blood tests she wants done.
Clean sweep - all three in one blow. Bang goes pretending a normal life.
Normality is a total sham, trick of lights and mirrors round here. People marvel when they are told of the kids' issues "Oh but they all look typical". That's credit to the kids' hard work - and my constant jogging on the treadmill, the one we can never seem to escape.

And then I pick up the Little Treasures Magazine (parenting mag here in NZ) and see there's an article on the stress of giving birth prematurely. It's as good as far as it goes, and goes into PTSD as well and the difference between that and PND. But then it totally blows it for me - the parents quoted have all 'recovered' and their kids are all fine. A grand old age of 3 yrs and another at 3 months.

We thought N was fine at 3 years too, W wasn't diagnosed with AS until 4. Problems with learning and higher congnative and executive function often don't show up until as late as 8.

When these problems hit, the whole seige hits again too. This is as relevant for parents of micro-prem and more severely prem babies as it is for the moderate to late prem kids. In someways it's worse for the moderate to late prem parents because we really are told to take them home and expect a normal baby - and when they aren't, and so often they aren't because of their prematurity - it is thrown back to us as our fault because they were prem or because you didn't see the warning signs and do something, or nurture them enough in the NICU - or no one listens to you when you do see the warning signs because 'nah, they are just a normal baby now.' Extremely prem parents had much bigger worries about keeping their child alive and over much more deeply engraved special needs. That extended roller coaster of the NICU sets you up for unimaginable fears and drives deeper into the PTSD grounds I'm sure.

But after having done 3 years of instantly responding to apnoea alarms and not feeding pump alarms - I'm a true pavlov dog too - at least the end of a feed doesn't trigger fear of death, that's true but the apnoeas sure do.

I also worry about what kind of a life W will lead and how truly independent it will actually be - having had to remind and re-teach him how to apply shampoo to his hair - aged nearly 12.
I don't even know if N's madcap ideas and impulse control free life will actually cut his life short - there have been a couple of close runs already in his 9 years.
I don't even know yet if T's amazing intellect will be freed enough by inteligible speech and how that's going to affect reading, writing and comprehension in the years to come. Today was a lovely example - a couple of the characters were performing in big plastic balls - he was wowed - and wanted to know if they had breathing holes in there and if there was a zip to get out. He also asked for confirmation that they were people in costumes - because dinosaurs are extinct, the octopus couldn't live outside water, and are there really dogs THAT big? But he also asked quietly in case the other kids thought they were real.

If people want to write about the stress of having a premature baby, they really need to follow it through with the on-going stresses of having a premature child. So many parents of 32 - 36 weekers in NZ will be looking at yet another article tonight and wondering why and where they have gone wrong because their child isn't 'normal' now.