The six week holiday is over, a collective sigh of relief can be heard from homes all over the country.
A summer holiday with Pearl is generally trying. We spend the first week being bad friends. Pearl expects me to provide days full of excitement at least as interesting as school. I expect to be able to continue with work, tidying and writing in much the same way as I do in term time. We are both stubborn and unreasonable. Oh, that’s not quite all.
Every holiday I have two noble aims. Firstly I will toilet train Pearl. Secondly I will teach her how to speak.
Pearl has been in the school system since the age of three. Every single holiday since then I have had the same aims. I have clearly learnt nothing from this experience. Neither has Pearl.
This holiday has been particularly difficult. I ditched the goals in the first week (there was a lot of wee). In retrospect reducing my antidepressant dose was not well timed.We did however do some amazing things (In the Night Garden Live anyone? At least as enjoyable as Benedict Cumberbatch in Hamlet last summer. Truly) I however struggled.
I had plenty of Direct Payment money saved, for plenty of support from Pearl’s two awesome Personal Assistants, but I struggled. I was tired, so tired. Nine and a half years of special needs tired. Mr Pearlie J and I went away together overnight, child free. Still I struggled. I just did not want to come back. Pearl went out with her PAs. I did not want her to come back.
For the first time in ages I lacked flexibility, I was tired, I hated myself, I hated my life and I struggled.
Pearl I suspect is prepubescent (Worms anyone? They’re tinned) I am well into an early menopause. This is a heady combination. Being Pearl, full of hormones, cognitively challenged, full of self esteem and non verbal, led to kicking, stamping, shouting and biting. Independence fostered at her fantastic school resulted in tremendous attempts at achievement any time I left the room to do anything as ambitious as going for a quick wee.Things were spilt, fallen off, broken, and rooms generally trashed. I most fabulous and patient of women, had none.
If you are possessed of an assertive young person of differing ability things cross your mind when meltdowns occur.
Is she autistic like her brother? How do I know? Would knowing help?
Does she hate me?
Do I hate her?
When she is 46 will she still be doing this?
Is she in pain?
Is she regressing?
How will she cope with puberty when it properly arrives?
Will any of us survive until September?
My default response to these thoughts, which race harum scarum through my head at a mile a minute is a good healthy dose of denial. This holiday someone appears to have taken my denial, and its helpful assistant emotional resilience. I only hope they had much joy with them.
Our holiday for me was characterised by a beautiful picture of Pearl I shared on my Instagram page with the following post.
‘This is the proof of the lies that Instagram tells. A beautiful picture of a glorious child taken by her stylish mother. Pearl and I left the house early, dog in tow for a secret trip to Beadnell Bay. I’m such a great mum! Pearl wanted to walk from the car, despite not wearing AFOs (splints) just crocs. She feel over, screamed, I manhandled dog, buggy and screaming dervish onto beach where she continued to scream repeatedly. At this point I noticed that she had horrible dental caries on a back tooth she never lets me brush. Feeling super crap at parenting I encouraged her to play in this hole, she calmed down, I took this picture. This was followed by renewed screaming as the sand had got into the graze, which was much worse than I realised. Bundling dog, 3 wheeler and screaming child back into the car I winded myself on a kissing gate.
‘Tomorrow I am putting her in bed with Dad and an iPad, while I go out for a run. Alone.’
On the morning Pearl went back to school,my shoulders moved away from my ears a good five inches. I missed her. I loved the fact I missed her. All the guilt and anger and fear faded away. When I look back over the holiday I know I will remember the stand out parts, not just the stand out tantrums. I’m mindful of another special boy, who did not make it through the holiday, and hold my bossy, sassy, tiring girl a bit tighter.
I remind myself how far we have come. Pearl is learning. She has changed. We do love each other, oh how this child is loved! She will learn and grow and change again. She is just nine and her body is getting used to growing into her future womanhood.
These tricky times will be got through. Like the endless holiday, this too will pass.
As published by a SWAN UK member and blogger at thewrongkindofsnow.wordpress.com