Monthly Archives: March 2014

Surviving a wedding…

On Saturday my best friend Sarah got married. I thought this was going to provide us with a real challenge. I was right! I was a matron of honour which meant I couldn’t be with my girls all the time which I knew would cause extra issues.

We did lots in advance to try to prepare for the day whilst trying to keep things low key; a difficult balancing act. As well as the normal things you would do for a wedding like shopping for new outfits and buying a present and card I tried to help the girls by doing a few extras.

The first was to make sure my best friend invited my mum to the wedding. Space was limited but luckily for me Sarah loves us and she knew that it would be too much for me to manage on my own. So that was easy to sort out. My mum looked after the girls in the church and also for the afternoon reception as I was on the top table.

Secondly I wrote a social story for the wedding weekend and got the hotel and church to email me photos of the venues, bedroom etc so I could include them. We practised wearing the outfits to check there were no sensory issues with the new clothes and I included photos of them wearing them in the story.

Then I bought new handbags – a guaranteed winner with most little girls – and filled them with little things to keep them occupied; a notebook, pencil, rubber and stickers, a pop up pen etc. I also bought more activity books to keep for when they got bored.

Lastly we visited the church the day before the wedding for the rehearsal so the girls understood what would happen.

Was it hard going? Oh my goodness it really was!! I can’t really describe how tough it was. My girls are very different so Bunny disassociated completely whilst Kitten became more and more dysregulated. My mum had to take them out of the afternoon reception in between courses as it was just too much for them to cope with. Even I didn’t expect them to find it quite as difficult as they did and I think we both found it upsetting to watch. And the evening reception, which I did on my own with the girls, well it was unbelievably difficult but we lasted till about 10pm which was pretty much a miracle. The girls also had their first night in a hotel room since intros which was another challenge for them.

However I’m going to end this blog with a few positives. I am thankful for God’s many blessings that day:

I thank God that we were able to witness Sarah’s marriage to a truly lovely man. I love them both dearly and am so grateful to be part of their lives. They both did everything I asked to help us cope with the day.

I thank God that in their own little ways Bunny and Kitten did get pleasure from the day, from their new outfits, from seeing their Auntie Sarah get married and definitely from spending extra time with Grandma.

I thank God for Sarah’s family. Despite the fact it was Sarah’s wedding and the fact they had travelled many hours to be there, her parents, sister and uncle all spent large amounts of time with the girls outside the main room, chatting, colouring, dancing and doing magic tricks to amuse my very stressed children. What amazingly kind, gentle and generous people they are.

And mostly I thank God for my mum – a woman I can only aspire to emulate; so intuitive with her complicated little granddaughters and so supportive of me, always there when I need her despite many other calls on her time.

Would I do it all again? Hmm let me recover from this weekend before I answer that one!

Advertisements

Confused and Despairing

I haven’t blogged for a while. Perhaps I am worried about being judged by people or maybe it’s that I don’t want to admit that I’m not coping.  And maybe I’m a bit ashamed that I can’t find anything postive to blog about when others in similar circumstamces can.

I’m usually ok if I only think about the day or week ahead. But recently I’ve been trying to decide what I’m going to do long term to get help for the girls. Kitten has a RAD diagnosis. The CAMHS consultant said she is probably on the autistic spectrum but as she’s not 100% sure she’s not going to diagnose her. Bunny is being assessed by CAMHS at the moment but has no diagnosis and no-one is saying too much about her, especially as she acts in not out at school, if anything disassociating or shutting down when things get too much. Her CAMHS keyworker mentioned ASD a lot but her consultant wasn’t convinced. Referrals are in to the OT but the waiting list is long. Both my girls struggle with school daily. They have lovely supportive teachers who listen to me and do their best to implement suggestions I make but the school is not prepared to put extra support in place and the only word I can think of to describe the Senco is dismissive.

So…I have to decide do I pursue diagnosis elsewhere to see if indeed the girls are on the autistic spectrum or do I go to a specialist provision such as Family Futures or Chrysalis, or should I see a private OT as the waiting list is so long or maybe it’s best to persist with CAMHS? And also do I try for a EHC plan even though school will never support it? Most of these depend on me getting funding from the placing authority. I feel overwhelmed. It’s too big a decision, no-one else can really help me decide and I’m confused. So at the moment I’m doing nothing.

The result of doing nothing is I guess I am despairing. Because while I am doing nothing, nothing is improving and in fact things have deterioriated yet again. Which in my house is saying something!

Adopters sometimes talk about micro-moments; little glimmers of hope to treasure when times are hard.  But there have been some micro-moments recently that have had the opposite effect. They are such tiny incidents in our lives but they have had a big impact on me.

Bunny had a supply teacher one day at school and it had obviously unsettled her. She spent every second between collecting her from school and bedtime on my knee. I couldn’t even go to the toilet. When I tried to get up Bunny looked into my eyes and said Be careful Mummy because I might get a knife and stab you or I might cut you into pieces. I am used to her hitting, kicking and spitting at me mid-meltdown but this was in a moment of calm and it felt very different.

A recent micro-moment with Kitten was when she fell at school and hurt herself quite badly. At home I asked her Did you want mummy when it happened? And she answered No I had forgotten about you. She meant it. I know it’s not her fault but it still hurts to hear that from your child. Her anxiety seems to be getting worse and her stimming is consequently very severe. She is constantly twitching, rocking, murmuring, blinking, throat clearing, chewing, humming, rolling etc.

So here I sit paralysed by indecision, trying and often failing to keep my children from harming themselves, each other and me until I can get myself together enough to decide what to do for the best. I know I can’t put it off forever. But I am confused. And I am despairing.