no one told me that

‘how far back does our online diary go?’, ‘when did we start using it?’, ‘I don’t know!’ – ‘well what is it you’re trying to remember?’, ‘I need dates for these assessments (showing a scribbled list) – I’ve narrowed it down to 2012, but it could be 2011??’….

When the kids were born, we had the little red books with spaces for all the milestones & vaccinations, weights & heights, no one told me I might need a set of box files kept neatly to hand in chronological order. No one told me it would be useful to hang on to letters about dates & times of appointments, or e-mails, or phone calls. So here I am trying to piece together a timeline from the scattered information I have kept. Its making me feel drained just looking over it all, so that I can fill in the new forms in front of me this week!

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No one told me, because no one knew that for us family life would involve all this. It’s just kind of evolved that way.

It all began really with an overwhelming feeling of helplessness that I just couldn’t get breastfeeding right, I just somehow wasn’t relaxed enough, or producing enough milk, or not holding her in the right way?? It just wasn’t working, and I couldn’t meet my little girl’s vital needs. The midwife had to keep coming round, she advised us through the transition to bottle feeding, we tried different bottles, different teats, tried demand feeding, tried to the clock… to no avail. Feeding was a battle. And our little bundle was a bundle of stress and sleeplessness – no surprise we thought, she’s always hungry bless her. Health visitors checked in regularly, at one point I took her to the doctors nearly once a week asking and asking why she was struggling – or why I was struggling… to no avail.

Weaning proved equally tricky, she was obviously scared of food, scared of the feeling of it, and swallowing it. She walked early and I can remember following her around with a yogurt trying just to get a spoonful in every now & then while she played – just something each day. I read everything I could find, tried every idea I could think of – picnics in indoor tents, tiny pieces of colourful food in ice cube trays, food pictures, playing with food, eating altogether, eating alone, sitting with me, following her around on the go, food treasure hunts. But we were at the bottom of a very long uphill battle.

When A came along the difference was so stark, the first time he was offered food on a spoon I had to hold tight before he swallowed spoon & all!! But B was still obsessively picky, and resistant to food. I remember asking for help as always, from the health visitor at A’s 2 yr check. We were sitting in our new house, Andrew’s first post following curacy, in the sitting room and I so clearly remember her words and the deep pain that followed. ‘If you keep on thinking this is a problem, and keep on asking for help, you will create an anorexic child!’. Those words, and the tone in which they were said (a ‘you don’t know just how good you’ve got it, I’ve bigger problems to deal with’ kind of tone) haunted me. So there was to be a gap in the timeline of appointments and support – I was desperate to avoid the danger of making everything worse so I took her at her word and stopped asking, stopped thinking about weight and tried to ignore the fact that A was growing past her fast.

In the meantime, as we muddled along, trying to be ‘calm around food’, and not draw attention to the problems (which of course were still there and growing) we kept our head down and got on as best we could. I went along to ‘webster stratton’ parenting courses (basic and advanced!!!), and it just seemed to me every week that we had a little one who was different from expectations. I remember laughing inside when we learnt about child led play & how at least 10 minutes of this each day was vital for a contented child – ‘maybe your problems and difficult behaviour would change if you tried it?’ – the diary I kept that week showed more child led play than anything else which was no surprise to me; it was the ending of it that proved tricky not the lack of it. Let’s face it, its not unreasonable to expect a 3 yr old to be able to pause for mummy to go to the loo every now and then (without working up to a frenzy which could mean hurting herself) is it?? She found the loopholes in the time out system in no time – it was quickly her doll that hit or grabbed and then of course how could I send her to time out, because it wasn’t her… she could keep her attention on changing a behaviour for just long enough to complete a reward chart and then of course get back to her comfortable routine… and no sleep techniques even seemed to make a dent in the lack of good sleep we had been experiencing since she was born!

Anyway, she was starting nursery too which might help – she was so bright, so ready for the challenge, maybe she was just bored at home, maybe I wasn’t being creative enough or imaginative enough, or dedicated enough to meet her needs. But she struggled to be left – big time! There were weeks where I rang up on the Monday and simply said that she wasn’t able to come in for a few days – she and I were under so much stress trying to do it, that we needed breaks. But of course soon enough she was 5 and had to go to school, no choice… and that year, and the year after that, and the year after that were tough.

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When she was in Reception class she had a brilliant teacher, who seemed to just ‘get her’, loved her zest for life, and knowledge, found her eccentricities fun like we did. That helped such a lot, we could talk, and share ideas, say we were worried when it had been a tough morning getting her up & out. You may remember that the government in its wisdom started a new campaign to ‘tackle obesity’ when my children were small – its still going now – as part of this campaign children as young as 4 going on 5, in reception classes had to be taught about healthy food. It wasn’t necessarily designed to designate good foods and bad foods but inevitably that was probably the easiest message for a little girl who distrusted foods to take on board. And despite the best efforts of that wonderful teacher who immediately began some work with the class around health, confidence and self-esteem, the struggles began to escalate. Within the next couple of years we went from obsessively picky, to obsessive avoidance – using all the tricks in the book, going to the loo during meals and spitting food out in the toilet (yes at 5,6,7 yrs), hiding food – play handbags brought to the table especially, as the stress mounted for her and us it got to the point where we were dealing with a meltdown before every meal and every snack, and if we did calm her and bring her to the table to eat sometimes the panic would overtake her causing her to be sick. It was out of control for all of us; A began to panic at the thought of a mealtime too and all the stress it would bring, I would begin to panic and despair as it got near to the time to prepare food. And B was not thriving. I can vividly remember bathtimes when I felt overcome by her physical fagility, not sure if I could safely pick her up – she looked as though she could snap. Something had to change.

So we broke the silence. I asked Andrew to ring the school nurse, while I stood listening, so fearful that a door would be closed on us again.

This time it wasn’t. She spoke at length with Andrew about our concerns, I can’t remember now whether she came and weighed her or it was the GP she encouraged us to see, or the hospital staff where she sent us for blood tests to rule out things that would need urgent attention if she had them. Relief slowly seeped in to the stress and sense of isolation that had built up within me over those few years. Somebody had taken us seriously, and was doing something.

From there we have continued on a slow but perhaps more steady way forward, with the patient (and thorough) work of CAMHS over the next few years, paediatricians got involved who have been monitoring growth, weight and height. Dietitians came alongside at different times, and psychologists and psychiatrists challenged, questioned, and reflected with us so that we could better understand  what was going on. Searching into our parenting, our experiences, our feelings about food. Listening carefully to B’s feelings and reactions to different aspects of our family life. There have been parts of that that have been uncomfortable, we have had to make ourselves open to strangers, we have wondered often if we were right to have begun something that has pushed B through some really difficult and challenging appointments. We have felt the guilt of that. We have also very much felt the concerns of others, ‘why are you looking for a label?’. We weren’t, but we were looking for understanding so that we would have a better idea where to turn to help B to grow and thrive.

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The day that we got given the diagnosis of ASD/Aspergers was such a turning point. Yes there was the realization that this was life long, and no one could tell us how it would go on shaping us all or what the struggles ahead might be for B. But also there was relief and hope, that through it we were gaining (and planning to continue to learn) a new way of seeing things with B and for B. And everything began to make sense for the first time, this diagnosis encompassed, explained in some way such a lot of our experience together as a family. And for B it was like finding a door to a community of like minded people in an alien world. In fact quite by chance Newsround Extra had an episode narrated by Rosie King, in which she explained about ASD and Aspergers and did it in such a positive way. (https://m.youtube.com/watch?v=ejpWWP1HNGQ) After watching it (just before one of the key assessments towards diagnosis) over and over and over, she said excitedly to us ‘Rosie is like me!’ – ‘I might be autistic?’, ‘is it something you want us to ask Dr Lorraine about?’ – ‘yes please, I’d love it if I was like Rosie, I’ve never met someone just like me.’ In that one conversation I sensed God’s gracious touch as we began more formal assessments that were needed to give us the diagnosis. It was all in God’s hands, the timing, the struggles, the future, the people who would move in and out of our lives to support, the impact on the whole family’s health and well being – it was all in God’s hands.

So, this form in front of me to be filled in this week is the next step forward in faith, I am hoping it will open up new kinds of support that will nurture and sustain us in the coming few years, and will enable what is needed to help B continue to grow and thrive. I need to reflect that alongside the heaviness and sadness that comes flooding back as I root through paperwork to find dates and names, I can also trace the faithful gracious touch of God too, as I recollect the friends and professionals who came alongside, and by recognising His protection as I look back and realise afresh that the physical damage for B could (perhaps should) have been so much worse. There were times I felt completely alone with it all, times I wondered if anyone would ever really see or listen and there were so many times I struggled to believe anyone could understand. It’s painful to recollect those feelings of hopeless helplessness. And I know there will still be moments of struggle to come… I pray I will go learning to trust, and recognise God’s faithful presence with us.

Father God, it was all in your hands all along. You have searched me and you know me, you know when I sit and when I rise, you know my thoughts – before a word is even on my lips you know it completely. You knit B together, watched as she was formed, cradled her and nurtured her in love. How precious are your thoughts to me – how vast is the sum of them! Search me and try me Lord, change me, lead me…

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5 responses

  1. People on the outside have no idea how difficult things can be do they. I always found writing things down for the various reports so exhausting – acknowledging what was happening in black and white made it harder to deal with than just living it, so I hope this blog has been cathartic rather than exhausting for you. Our experience was not so much around food, but around germs and washing and repeated changing of clothes and washing down furniture. But the principle is the same – trying to gain some sense of control. We have found that things have improved as J matures, so I wish the same for yours. God Bless.

    Liked by 1 person

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