The Best Laid Plans.. I

This post originally appeared on Firefly.

My mum has always said that nobody should ever have a first baby. Much better to start with a second when you have all the relevant experience.

In a similar spirit of helpful but impossible advice I offer you a planning schedule recommended to be in place before giving birth to a child with Additional Needs.

 

You are most welcome.

 

Do not have a prior history of depression, or any health needs physical or mental of your own.

You won’t have time for them. No professionals will ever think of asking after your health, so really there’s no point.

 

Knowledge of law or education, preferably to degree level is highly advised. Without these the Local Authority may attempt to tell you that you are not entitled to expensive things, that you really need and actually are.

 

Career ambition for yourself is not necessary, you will be required to cancel meetings, work days and other plans at the drop of hat to fit in appointments, which mysteriously seem to congregate together within a fortnight. You can of course cancel and rebook, but that risks being labelled a difficult parent. It won’t be written anywhere, but everyone will know you are.

 

Ambition generally is a dangerous thing, imagining you could go out alone or with a partner is optimistic, on some days going to the toilet alone will be completely beyond your capability. Believing your child deserves a place in society is also problematic. Being prepared to settle for less can lead to reduced emotional stress and, therefore, peace.

 

An independent income, preferably from a Trust Fund or inherited wealth will make your life easier and less of a drain on the state. It also ensures that you don’t have to discuss your family’s difficulties or finances with well-intentioned Charities. Think of the time you could save writing crowd funding requests!

 

Ensure that you are a very young parent, in peak physical condition and that this is your only child.

 

Be certain that you are an older parent that cares less and that this is at least your second child.

 

Be in an extremely stable relationship with a healthy, resourceful and emotionally aware partner.

 

Be a single parent with an incredibly supportive family and friends, you don’t have time for a relationship anyway.

 

Ensure your house is on one level with total accessibility to all rooms and hoists. You may not need them now but plan ahead.

 

Nurture friendships with young, fun but responsible people who can drive, and display a maturity beyond their years, not for themselves, you understand, but they have Personal Assistant potential.

 

Test your remaining friends by constantly cancelling plans at the last minute and taking weeks to respond to their texts. If they don’t like it, you may as well ditch them now.

 

 

 

This then is my recommendation to you. I myself have opted for the all the gear and no idea approach to special needs parenting. On most days I actually seem like I know what I’m doing, on others-well there’s always cake and cynicism.

 

To finish I’ll share another gem from the mothership. She has always maintained that no matter how you parent, or what mistakes you make, as long as there is love in your home everything else will smooth itself out. And, in this at least, I think she’s right

 

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Not Safe For Work.

Parenting can leave your personal life in tatters, your emotions wrung out, and as for your libido, well, nuff said.

Being a parent carer of someone with Additional Needs can magnify this, and many relationships buckle under the strain.

Luckily I had the foresight to marry someone 23 years ago who would easily be able to support me on this journey and who I also continue to fancy the pants off. Lucky is the operative word here, how could we possibly know at the tender ages of 25 and 26 what our lives would become? We were babies!

Anyway, that’s not the point. Despite childcare demands and the menopause (and if you are related to me you may want to LOOK.AWAY.NOW) which has had an unexpected effect on my-lets say drive-my body appears to have thrown caution to the wind, aware that reproduction is no longer a threat.

This is a brief explanation of how I nearly managed to scare a Social Services support worker, and how despite being 48 have so far failed to do grown up.

One day, after a run, I returned home glowing, and full of endorphins to an empty house. I was wearing s cute hat stolen from the eldest child (it was winter) and was looking, #imho, pretty fine.

Flinging my clothes off pre shower, I caught a glimpse of myself in the mirror and was happy with what I saw. (Oh if only I appreciated myself as much when I really was glorious in those teenage years before everything became overused and droopy, as I do now in (gulp) middle age.

I digress.
Sexting is really not a thing for my generation (feel free to disagree and share-I dare you!) but for some reason, the endorphins, the cuteness of the hat, the HRT, I felt it would be appropriate to take a cheeky, topless shot. Not totally topless obvs -I was after all wearing a hat! This for the benefit of Father of Pearl. Just to remind him.

Sniggering like the  teenager I never was (my version was sensible and religious) I  fortunately texted him before pressing send.

“Are you on your own I have a picture for you”(winky face)

 

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Panicked reply.

“No,NO.NO I”M NOT I’M IN A MEETING!!!!!!”

Thank you, thank you, God that I had the 48 year old foresight to text ahead, specifically as I had not realized all texts run live down the side of the ridiculously large computer screen in the Blue Beck offices.

As my running high wore off remembered. The cloud! It was a thing! We had it! We all shared it including my teenagers!

Frantic texts followed

“Will that picture be on the cloud? Can the children access  it ?Who can see it????

Shit, shit, shit.

“WILLYOUPLEASERESPONDTOMYTEXTS!!!!”

Anyway it was finally sorted, deleted, cleared normal life resumed. I decided as a passion kindler sexting was not for me.

Back in the real world of additional needs.

Pearl receives direct payments for Personal Assistant employment. Every 6 months or so a Family Support Worker comes to visit to check we are using them appropriately and what’s occurring Chez Pearl.

Pearl had, since her last visit taken part in a play, modelling contract or some-such of which I was inordinately proud.

I sat down next to Mrs Family Support to show her the photos.

Scrolling though as you do (note to self never scroll through photos next to someone. At best it’s boring)  I suddenly appeared. Sans top and plus a rather fetching hat.

I have never ever, ever, swiped a phone so hard or so quickly. A blur (I hoped) of pale flesh. Cheeks on fire, I said, with a nonchalance I did not feel.

“Oh my days what was that? I don’t know what the was !”(nice try Pinocchio)

And then, because I’m a really good parent

“What have those kids been doing with my phone?”

Thus throwing into question my parenting of said teenagers.

Did she see?

Did she know?

What must she of thought?

I think she must have, I think she would have known?!

How did the ****ing photo remain on the ****ing phone when I’d deleted it with such assurance?!

Even my tech guy (and he is good) doesn’t know.

The epilogue to this sorry tale of middle aged desire.

My children have not been removed. My husband thinks I’m hilarious. No teenagers saw anything that would have embarrassed me and mortified them.

Better yet the entire staffing  of Social Services has been restructured and we have a new family support worker.

I am a grown up

I am!

Happy Valentines day to one and all!

 

 

Goodbye to All That..

This post originally appeared on Firefly at the beginning of the new school term.

 

Hello and congratulations!

Made it through the school holiday?

Feeling smug?

Or, like me utterly exhausted and considering out sourcing your parenting to someone more qualified and altogether calmer?

Is the undoubted joy of handing your child over to someone else, tempered by fear of the consequences?

Then you are probably the parent of a child with additional needs.

Perhaps you love someone spectrumy who is managing in mainstream, but struggles with change and has to enter a new class, with a new time table, and new teachers?

Maybe your small significant other has complex needs and you have to trust someone to keep them safe, well, clean and alive, along with the curriculum?

Do you love someone moving from Mainstream into Special Education, and fear that there will be associated stigma?

Or is your small special person moving into Mainstream?

How do you balance the relief at having time to go to the toilet alone, with the concern that someone else who doesn’t have a parent’s eye is caring for them?

How do you relinquish control?

Pearl is now 11 and has left her beloved Primary School and is heading off somewhere new.

To be honest Pearl, although apprehensive, is excited and looking forward to making friends.

I do however, expect an increase in challenging behaviour and mood swings over the next fortnight.

And Pearl may have some too!

There is always a wistfulness to this time of year.

Taking the dogs out early this morning mist hung in tunnels over the fields.

The blackberries are going over (they have, “the devil’s claw”, an old term I particularly like for the fusty, past their best ones).

There is a feeling of change in the air.

Change of weather, change of season.

Shortening days and cooler nights.

I have been involved in the education system for 45 years, pupil, student, school therapist and mother.

Autumn is intertwined so tightly with the new school year it’s impossible for me to extricate my emotions from the season.

Tomorrow when Pearl puts on her new uniform and gets on a new taxi, to go to a new school I will be tense.

Will they understand her?

Will she fit in?

Will they see how wonderful she is?

Did we choose the right school?

I know I’m not alone.

From experience, I know this season will be replaced by the next, routines will be reestablished, and life will go on.

So fellow travellers, let them leave, take a deep breath, put the kettle on.

 

 

 

 

Ch – ch – ch – ch – Changes.

Time may change me, but I can’t trace time.

Pearl is currently in transition. In non jargon she has spent half a day at her new school, and today is spending the whole day. The rest of the week, it’s back to Horton for goodbyes, parties and general end of term shenanigans.

I too am in transition.The new school seems really promising, a new start is quite exciting. The holidays are coming, there are still house moving boxes to be unpacked, Pearl has a new set of wheels from wheelchair services.

Last night I dreamt someone told us we couldn’t live in our lovely new house anymore. We went back to the old one, and the new owners had spoilt it, and wouldn’t let us have it back. Then a variety of people I love and respect appeared and told me they hated me. It was one of those nights when I may as well have stayed awake.

When I am very stressed, I get busy. (At one point I was doing three part time jobs and caring for two children with additional needs, plus one with mental health issues) at others I’ll set myself challenges, or overcommit to volunteering.

It works well as a distraction strategy, but it doesn’t actually make the stressful situation go away. If I allow it to, I become totally overstretched and have to drop everything.

It is just possible I am writing a blog a day, to distract myself from the very purpose of writing it.

 

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All the feels, just all of them.

Pearl is leaving Horton. All the people who have known her for the past 8 years, watched her grow, faciliated her development gone. The staff who encouraged me when I was wrangling with the LA for a place at Kiplings, the people at Kiplings who have washed her, put her in her PJs and tucked her in, will all fade into memory and no longer be part of daily life. Pearl’s marvelous Paediatrician, who has been with us even longer, now works for Staffordshire and has a clinic in Horton. She has listened to me whinge and rail against injustice, provision and NHS shortcomings, and celebrated with me when Horton turned out to be the place, the very place for Pearl. She too will be replaced by someone from our Cheshire, because it makes logistical sense.

I am not good at goodbyes, not good at all, and leaving all these people will be a tremendous wrench.

When my children stay away overnight, I have always put a lipstick kiss on a post it, and written ‘a good night kiss from mummy’.

Just in case I become emotional and rush off on Friday, here Horton is one for you all.

 

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A thank you kiss from Mother of Pearl

 

 

 

This blog is part of a blog a day for Horton.So far we have raised, through your generosity £390 for the Parent, Friends and Staff Association.To add to the pot and help them provide some extras that make a real difference to the friends of Pearl donate here.

 

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A blog a day for Horton. 

 

Kiplings

In which Pearl packs up her troubles in an overnight bag and smile, smile, smiles.

Horton Lodge Community Special School is adjacent to Rudyard Lake. If the name Rudyard sounds familiar, it is because two day trippers, John Lockwood Kipling and Alice McDonald, visited and liked it so much when they later married, they named their son for it.

Attached to Horton Lodge  then, is Kiplings, a part of Horton but slightly apart from it too. It offers overnight provision. Horton is not a boarding school, and nobody stays there full time. If Kiplings supports the EHCP of a child, then with the agreement of a panel they can go for one to two nights a week, reviewable every six months. I cannot begin to express how rare this provision is.

I will not go into detail how long it took to get our LA to agree to fund Pearl staying there one night a week, but it was worth the battle.

(For anyone else battling for provision some  phrases such as “equality of opportunity'” and “equality of provision”can be quite useful.  Make sure you support your requests with arguments aimed at the right department, Social Care and Education have separate budgets. Swap the request “I need respite”-not education’s problem – with “she would benefit educationally from…”)

Anyway I digress. Pearl loves Kiplings,they have worked hard on her activities of daily living (much easier in a residential setting) and her independence skills. Also my early concern that she would get out if her bed and try to get in with someone else, was fortunately incorrect..

At Kiplings they have a club, they can choose their own activities, and hang out with their friends. Horton children come school from far and wide and  the chance to go for tea or  have sleepovers with medically complex children just doesn’t arise. (Hence “equality of opportunity”). It is very, very, VERY hard to trust someone with your best beloved (no Rab, no Glory you are ALL my favourites – it’s a nifty little Rudyard Kipling reference) and the chance to be away from a child with additional needs is so very rare, many parents never get it.

Imagine then a child given fantastic care and having fun, in a setting they go to daily, with staff they know and love. Of course Pearl gets educational benefit, of course it supports her  EHCP, but also it gives her the opportunity to do something different without her family, that we can then chat about with the home school book and PODD.

Lastly it helps us. For one night, we can turn our attention to family life, Pearl’s sibs get a look in and I can switch off my hyper vigilance.

On Wednesday, for the very last time Pearl, will set off with her overnight bag for a stay in Kips.

Three cheers then for Kiplings, you know Pearl loves you because she sometimes tries to come across when it’s not her night, you know we appreciate you because we trust you with our precious Pearl, and I know we’ll miss you, because Mr PJ and I are hotfooting  off for the day and staying in a hotel overnight as the chance may never come again ( I do hope I’m joking)

 

This is part of a blog a day for Horton,to donate please click here and leave as little as much as you like.

 

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Help?!

In which help is required, and two schools take very different approaches to providing it.

We don’t do neurotypical in my family. As well as Pearl, we also have a son with Aspergers. It’s fair to say our school experiences with him have not always been positive.

Differences were apparent throughout Primary school, but as he hit year 6 and the pointless SATs, his stress levels began to rise exponentially.

His school had just been through a particularly unpleasant Ofsted inspection, and as a result staff stress was high, and the pressure to ensure all achieved, made the tests much more of a focus than they had previously been.

Rab (as he is known in the blogosphere) was having ‘tantrums’ (yes, before diagnosis we thought he was acting up) and was becoming very sad and withdrawn. He also experienced frequent stomach aches.

Busy with Pearl I had put Rab’s previous anxieties down to being a sensitive soul and mildly eccentric (oh my boy I’m sorry) I had not realized that the daily trauma of trying to fit into a neurototypical world, was frazzling his autistic sensibilities.

Finally as depression began to bite him and suicidal ideas were voiced I took him to the GP.  Twice. And was told twice, that I was overmedicalising the situation.

I do hope the fact that I’m known to live with depression did not cause our splendid GPs to feel I was over reacting. I do hope so. They told me he could be refereed to CAMHS but the service was so busy I probably wouldn’t get an appointment, and that the referral needed to come via school.

Some background. At this point I had had children at this excellent primary for 9 years. I loved it. I had been Chair of Governors and knew the staff. School had participated in a study Rab had been part of when he had been diagnosed with anxiety disorder. I asked his class teacher if she would refer to CAMHS with the help of the school nurse.Transition to High School was approaching. The holidays were looming and I was very, very concerned. I needed help.

On the very last day of school, having heard nothing, and assuming it was all in hand,  I asked the class teacher,

“have you heard anything from CAMHS?”

“I’ve discussed it with the Head who feels it would be better coming from his High School”

The High School that hadn’t met him, that did not know his peculiarities and strengths had not seen his ‘tantrums’ in action.

I share this, not to shame the school. It was otherwise excellent. I think in retrospect, Ofsted stress and end of term frenzy all played a part. I also think they had a lot of work to do on training and awareness of Special Needs in  general and Autism in particular, which I’m sure has since happened,  as they have an experienced  Governing Body and a new Senior Leadership Team.

No. I share this in order to show you what busy, overstretched schools are often like, taken up by all the gubbins that Government throws at them, and the admin required more related to school performance than pupil (and teacher) satisfaction.

And now I give you the alternative.

This Monday we had an excellent morning in Horton watching Pearl and her class mates swim, before witnessing the opening of the new school swimming hoist! (Things are a little different in Special Ed! ).

As I left I was grabbed by one of the staff, not Pearl’s teacher, and who in fact has never taught Pearl, although she enjoyed a weeks residential at an outward bound centre (more of this tomorrow!). Pearl is an experienced user of the PODD communication system.

 

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In PODD we trust.

“Jane”

Said this astute individual.

“I’ve been watching Pearl use PODD and I think she is ready for a more high tech version-what do you think?”

Chat followed, and we both agreed.

“Well then, I’ll refer her on to the Specialist Centre, we’ll do it now because we have all the information from knowing Pearl. It  will take High School a while to see how she communicates, but we already know”

Two schools both excellent.

One with Classe of 30 +  can’t take the extra work and hasn’t spotted an issue.

Another with high staff to pupil ratio, and freed  to think inventively about achieving curriculum  goals has volunteered information based on  pupil observation, and initiated extra work under pressure at a busy time.

All I can say is that if I was a teacher, given the choice, I’d work in Special Ed.

If I ran the Government (and frankly I’m a little too busy to take it on)  all schools would have a diversified curriculum and measuring and testing would have low priority at Primary level.

I suspect that pupil mental health would be positively impacted, and teacher burn out greatly reduced.

But what do I know? I’m only a mother.

Come on Secretary of State for Education, lets all #bemorehorton.

 

This is part of a blog a day for Horton.Any opinions are the authors  and does not necessarily reflect those of the school.

Help Pearl leave Horton Lodge PFSA a huge thank you, here.

 

 

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Omm….

In which a group of over excited children fail to spot the difference between yoga and sardines.

Yoga, once a spiritual exercise, has been widely embraced for its calming and mindful effects.

Horton Lodge has a simple but very effective way of communicating what happens in the day, a home school book. Filled in daily by the teaching and support staff, and also used by school nurses and therapists, it is pounced on daily in our house. Pearl is non verbal, so when I have read it we can talk about the day, with the help of the excellent PODD.

I have had a few favourite entries, but by far the most hilarious read:

“Today we started our yoga sessions.We spent the first remembering to stay in our own space on the mat”

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Photo by Burst on Pexels.com

 

Maybe it’s having worked in schools, perhaps it’s because Pearl is my third, but I could hear a world of patience, pain,and mild hysteria emanating from this simple sentence.

The next day was parents evening.

“So” I said.

“How was yoga, did they stay on the mats?”

The class teacher grinned broadly.

“Well we are using a DVD and the whole class (about 8 children of varying physical ability) made for the mat nearest the DVD and lay on top of each other in a big pile”

Now I go to a restorative yoga session every Friday. It calms me, grounds me,and helps me prepare for the whirlwind that is Pearl being home at the weekend. Because of this diary entry,dear reader, at the beginning of my weekly session,as I start to relax I hear in my head “remember to stay in your own place on the mat” and shake silently at the mental image it conjures up.

Namaste.

 

This is part of a blog a day for Horton.You can find out more about the school here .and help Pearl show her appreciation with a donation here.

 

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A blog a day for Horton