The girls came to us nearly 19 months ago. For about 17 months I seem to have been chasing my tail, slightly reminiscent of Eeyore but moving at a faster pace, trying to get some help for the girls. (That is, I move at a faster pace, nobody else seems to.)
Conversations generally go like this…
Me: I think we need some help for Big.
Them (social workers, GP, Health Visitor etc): What kind of help?
Me: Erm… I think they need….
Them: Really? Oh, I hadn’t noticed any of that.
The conversation then moves in circles until I suggest maybe an OT referral or an Education Visitor referral or a paediatrician referral.
These appointments then take place and I am left speechless not only at a lack of understanding at a very basic level but also at their complete lack of willingness to listen. And the trouble is because they are the ‘expert’, I end up feeling like I can’t say anything because they know best.
This week Little had a paediatrician appointment. This was to discuss her sleep (or lack thereof), her sensory issues and to discuss her eating of everything (paper, chalk, twigs, puddles, play dough etc). Or so I thought.
What it actually was, was a two and a half hour long appointment to be told at the end that her sleep problems are probably behavioural (we need to put firmer boundaries in place), she’ll grow out of the sensory stuff and ‘we’ll check her iron levels, as she’s probably iron deficient anaemic and that’s why she’s eating everything’. No strategies about what to do with the sensory problems in the meantime, no indication of what we should do if she’s not iron deficient, just ‘away you go, I’ll let you know the results.’
And the trouble is, I get so cross and frustrated that I can’t speak. I lose the ability to talk to people because I know that this is another appointment that’s going to lead to nothing. I’ve spent 19 months reading up, talking to people, researching, being with my child yet because I’m not an ‘expert’, I’m dismissed out of hand. I’m just ‘her mum’ and in this case as one professional recently told me ‘You need to stop worrying so much, she’s with you now, she’ll be fine’.
All the evidence points out that early intervention is so important but I have spent 17 months trying to get some early intervention and no one seems to want to do anything.
I realise that Little is still very young, but her issues are very real and leave her very distressed.
I also realise that everything these days seems to be budget focused. There are so many cuts taking place currently it’s terrifying. Yet surely anybody can see that cuts to children’s services just result in having to invest ten times more heavily in adult services down the line. Early intervention is key to getting it right, yet it doesn’t seem to be happening.
So who is the ‘expert’ in my children? Who is best qualified to say what they need? I know that I know my children best. But when it comes to getting them support my expertise in my children are dismissed because I’m not seen as a professional. I’ve only been doing this for 19 months and I’m already finding it hard. I’m finding it hard to keep going to appointments and talking about what I feel my children need and then being told that I just need to put more loving boundaries in place and it will all be ‘fine’ and ‘they’ll grow out of it’.
But I’ll keep going, because who knows, maybe one day, someone will listen.
The best bits
We went to stay at my parents’ this weekend. This was our first overnight stay in nearly a year. The girls did really well and have talked about going to the ‘nuseum’ since they came back. I’m also really pleased that I stuck to my instinct on this one. Not going anywhere for a wee while has definitely helped the girls feel a bit more settled here. There has been some fallout but not too much.
Little had pancakes at playgroup yesterday for snack. The photo they took of her shows her with chocolate spread in her ears, her eyebrows and her hair and also with the biggest smile you’ve ever seen. As soon as I walked in she shouted, ‘Mummy, I had chocolate!’