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 childback 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 9 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.
The Wrong Kind of Snow 
goodness I feel that… you are not alone supermum!
LikeLike
Thank you.Shouldn’t surprise me after all these years really but it still did x
LikeLike
As always, you honestly & eloquently put out there so many thoughts & feelings that are also mine. Post the 2 week family holiday with friends bubble, I found myself crying, a lot, and had to keep reminding myself that this is probably as tough as it will get. Hormones. Independent leanings. Mother / daughter rivalry. Such an explosive mix! Happy to wave her off on the school bus last week…Thank you for letting me know I’m not alone x
LikeLiked by 1 person
Thank you for letting me know the same!Sometimes I put it all down to “specialness”when it’s normal developmental stuff.Then when I do realise I feel relieved.But still exhausted .Obvs.
LikeLike
Beautifully written. It helped me feel less alone.
My son is now home educated and sometimes it all swamps me. It is right for him but utterly exhausting.
I too have those moments of will he still do this when he is older and they are always closely followed by the thud between the shoulder blades as I realise that I am also aging, possibly at a faster rate than him.
LikeLiked by 1 person
It must be exhausting.I had my Aspie teen off for a year and it was very tiring.Do you manage to get any time for just you?That swamped feeling is very familiar!
LikeLike
Not much time. I have a PA a couple of times each week but it makes it easier to do things with Adam, it doesn’t give me a break.
LikeLiked by 1 person
Take care of yourself-sounds like a difficult job,and that you are giving the very best for your boy.x
LikeLiked by 1 person
Ooofff, Jane, This summer sounded tough! AND you have 2 more beautiful offspring to sort still, also. No wonder you felt jagged and demoralised for some of the time. I bet there are other parents who can echo your mixed feelings about it all. The concerns for how the future develops for Pearl loom large also. Perhaps you and Pete will need to consider what plans you can put in place for Pearl’s post 16 years, when she will be registered as an adult. In today’s financial climate I guess any plans may meet resistance from Social Services who wil tell you it cannot be afforded. Not a positive outlook. Yet there she is and her brother and sister too, and all of you have survived and won surprising victories over the years. There will be more won, I am sure.
I hope, for your own sake, that you have been able to adjust your antidepressant dosage to a comfortable level and that the steaming haddabs of the menopause don’t last too long. (Though I must be honest and say that night sweats are and have been part of my life for 15 years! I can’t blame my snappiness on the dear ol’menopause, I don’t think. That’s just lack of self control and discipline in my case!)
Presumably you do talk with other parents of teenagers, whatever the teens’ state of ability. I think they are the best experts around at sharing what works best and what to avoid. Once we had some pro- active planning put in place before things became an issue, it helped a lot, at least with our daughter. Not sure it was effective with our son! And with Pearl’s unpredictability and lack of verbal language ( I bet her non- verbal language is A*!), it is not possible probably to reason through a code of expected conduct or pocket money provision with her. Hmmm. Difficult.
Nige and I are away for a few days at present but on my return, should we get together for a coffe and catch up? Would that be of any use to you? August went by at a pellmell pace and I did little in the way of visiting anyone apart from a trip to see my mother in Scotland. Now things are a little less vibrant on the church action front, so it would be great to see you. Our Tuesday walks continue- mostly. May have got thundered and lightening off today, from listening to the news! I guess coming to any Sunday services is just so hard at present, so please don’t feel bad about it, will you? A combination of you comes when you can, and we love to see you. Pearl saying her silent ‘hello’ to everyone with that cheeky stare she has, is just superb, ‘cos it’s obvious she feels right at home in the building and wants to check it and everyone else out!
I’ll stop rattling on! Thank you for your honest account of your family life in the long haul of the summer hols. You may be ragged, but you have all survived! Cheers to you all, especially Eleanor and Thomas. Hope school restarting went well for them. Eleanor is still at school isn’t she? Surely she isn’t another one who has stealthily grown up and is bound for Uni this Autumn?!
See you soon, I hope. Hugs for now, and well done for your searing and moving honesty, Jane. You ask yourself some tough but necessary questions and then tell yourself it will all resolve itself somehow! It’s tough. I wish it wasn’t, for all of you.
Love, Hellen xx
On Tuesday, 13 September 2016, The Wrong Kind of Snow wrote:
> pearliejqueen posted: “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 l” >
LikeLiked by 1 person
Thank you-I may try and have a walk that way we can chat and have coffee!Sundays are out at the moment as all our Saturday’s are taken up with Uni open days(it’s next year)and we are shattered after!We are aiming for one Sunday service a month-we’ll see how that goes so thanks for your understanding x
LikeLike
This is so honest and raw and I have a massive lump in my throat and tears in my eyes.
If I could shoulder a bit of your pain and responsibility for you, believe me I would but I wouldn’t know where to start. You and your family are amazing, and admirably cope so well
Please don’t put yourself down Jane. I think you’re ace!!!
LikeLiked by 1 person
Thanks.It’s just how it felt,and I know from comments that it’s the way lots of special needs parents feel.I want them to know they’re not alone
LikeLike
Hi there,
I came across your blog post via SWAN UK and I just had to write. I’ve never posted a comment on a blog before but yours moved me so much. I’m the mum of a four-year-old with severe learning disabilities who is also undiagnosed. I’ve found it tougher than I can describe and everything you wrote rang true with me. Thank you for writing. I know nothing can really help each of us in our own individual situations but it’s good to know we’re not alone.
LikeLiked by 1 person
I’m so glad it helped and I’m so sorry it’s been so hard.I have times when it’s more difficult than others,and this summer has been one of them.It can be very isolating I think,it is relentless too.i worry that we all think everyone else is managing just fabulously and it’s just us,from the comments I get we’re definitely not alone.It’s hard,wonderful,terrible and messy all at once .Thanks so much for your comment it means a lot.Jane x
LikeLike