Parenting Lily

For husband and myself this has been an amazing Easter. We feel free. We drove to the coast, ate fish and chips and made a surprise visit to some old friends and colleagues husband hasn't seen since the children came. Easter Sunday, husband did an Easter egg hunt in the garden which has become a tradition after our first child-centred Easter when we left it too late to get big eggs so got lots of little ones but the squirrels were stealing all them all from their hiding places before we could get the kids out hunting! It's a grey day but we've got our hot tub out and I've got some fancy food lined up for Sunday dinner but all of this is passing Lily by.  We invited her to join us in everything, the table has a pretty collection of flowers and eggs and chocolate and she had two surprises from her grandparents when she made it downstairs at about 1pm today. I think I've seen her for half an hour in total since Friday.  She got all hissy when husband told her to bring ...

I went away for an overnight mini break last week.   It was a good reminder of how good doing that can be, not just for me, but for the people I think won't be able to cope without me. Of course they do, in fact, they step up to the mark and do stuff that they never do when I'm around. Lily has been consistently failing to get out to school on time, she still had mock exams to catch up with but the results were coming back for the ones she had managed to do and they were not good.  She has been getting to school 'at some point' and in something resembling school uniform.  By 9am each morning I have been withdrawing to start my own work and conserve my energy.  I knew school wouldn't be happy but what am I supposed to tell them?  We are not 'letting' her stay at home but we cannot get her out any faster or any more reliably.  On the morning of my trip she tried to get me to agree to her leaving late and when I didn't she left late anyway.  She'd fo...

Lily says, My window was open! Why should I say sorry when it wasn't my fault? I didn't know there was a problem if a door slams. I had just called up to her angrily that she had to absolutely be out by 8.15am after she decided to take her phone back upstairs with her despite my protestations. Unusually she had come down about 7.30am, all chatty, looking for me - big hug - getting ready for her first full week of school attendance. Twenty minutes later, both of us in tears in different rooms, Husband asking me what he should do and wanting to help, mother-in-law cowering downstairs...@~#{£%&**! I am trying very hard to lower my stress levels.  I am very overweight and in my 50s. I have 2 aunts who died from ovarian cancer in their late 50s and 60s and I had a smear test booked for today (which the nurse has just cancelled).  I think a lot of people might tell me to withdraw from Lily and let her manage things on her own, that she is old enough.  If we had come to this...

I ended the last blog post with an either/or choice between what I think is good for us as a family and what Lily wants or needs for a healthy food intake.  I left my computer feeling guilty. How could I impose some family construct on her if that meant she found eating uncomfortable, stressful and hard to do?  Yet we had actually had a very pleasant time all together at the table the night before so I couldn't quite believe that it is was always as bad as she suggests in her angry moments. Last night was a 'get-your-own-dinner' night.  She was buzzing after spending time with friends so I felt I could sit at the table with her without troubling her.  She was happy to talk, I mentioned the BBC programme and she came back with a YouTube channel she'd found with a video on burnout vs depression and she was thrilled by how much made sense to her (It's this one by Mom on the Spectrum ).  I picked up on one of her bugbears which is people 'understanding' (or not...

Food, nutrition and eating are the topic of the day. One of my new year's resolutions was to remember that the way to Lily's heart is not  through her stomach.  That's not to say she doesn't like food, just that there is no point in pouring one's heart into a specially prepared meal or planning something she might especially like.  Her mood, appetite and level of engagement are highly unpredictable.   I come from a family where love is expressed in food and eating.  This is exacerbated by baby-boomer parents with a hatred of waste and a fear of hunger.  I know the social expectations around meals and restaurants and table manners and food intake are the bane of many people's lives, not just neuro-diverse folk, but it occurs to me (being the fan of survival shows that I am) that the value of food is built into our DNA. With a knowledge that food can be scare, sharing it or giving it to someone else is surely the ultimate gesture of love and care?  ...

I want to understand what behaviours Lily is masking, how can we help her feel more at ease about them and what soothing things might she also be avoiding because she thinks they are not acceptable? I remember watching the BBC programme Inside our Autistic Minds  where an autistic woman makes a film to show her mum what she has never said or shown her.  I've just watched it again and now I'm wondering how I can get Lily herself to watch it.  It's such a good reminder that we might not know our own children, even when we love them as much as we do. I can think of a couple of times recently when another parent has said of a worrying behaviour in their child, that it can't be happening because "I would know".  ASD aside, I immediately think of all the little deceits I perpetrated against my own parents as a youngster.  I think about how some friends I thought I knew well changed or how I upset other friends because I assumed they were like me, and they weren'...

Lily made it back from last night's excursion at a reasonable hour.  True to form there had been a text asking to come home later but I'd not seen it so I side stepped that one. All the same, she didn't make it to school today. I'm an architectural designer with my own practice designing extensions and refurbishments but business is slow just now.  I have one project on site, one just about to get planning permission and a few wallowing in the murky completion stage with a builder that has run into financial problems.  I work on my own.  My home office was taken over by Lucas last year when he was suddenly and unexpectedly sent home from his full time placement.  A few weeks turned into 8 months and I now rent a desk in an office in town.  I've always fitted by work round the family but just now I have even less of a routine than usual and responding to Lily's ebbs and flows is leaving me, well, at sea. Lily drifted around the kitchen this morning, clearly ...