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!

 

 

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. 

 

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

 

Thought for the Day

In which I review my favourite inspirational messages-and a fair few that just don’t make the grade.

This post originally appeared on Firefly Community and can be viewed here 

Inspirational quotes, you know the ones. They pop up on your face book feed with a beautiful picture of a sunset, someone climbing a mountain, or jumping in the air with pure joy. They are a mixed blessing. Some can really resonate, a quote from an author, a word of scripture from a holy book. Some can irritate. Some are just plain wrong, I’m pretty sure that Winnie the Pooh didn’t make the “I have a dream” speech, and the things that Oscar Wilde reportedly said, well just don’t get me started.

Hand in hand with this come the helpful little phrases people choose to share with parents of children with additional needs. Most of this comes from the right place, although “God only gives special children to special parents” should be shoved somewhere else altogether.

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I have compiled, for your reading pleasure a short summary of some of the most common. You probably have some favourites of your own. If any come to mind that help you/make you want to punch somebody please share with the community below the line!

Don’t sweat the small stuff, and it’s all small stuff.

In parenting a child with disabilities, as in life generally, this is not entirely true.

We brush up against mortality, severe illness, pain and struggle on a regular basis, plus the big questions of faith, meaning, love and loss. It’s not all small stuff.

Whether you have enough likes on your Facebook Page, if you have sent a birthday card a bit late, if your house is a bit untidy this my friend is the small stuff. You have my permission not to sweat it.

What doesn’t kill you makes you stronger.

This has always been one of my favourites. However now I wonder whether to replace it with

“what doesn’t kill you makes you exhausted, sleep deprived, Clinically Depressed, the possessor of a fierce and dark humour, snappy and reliant on alcohol”

Self-care suggests the first reading is preferable. On the days where the second is more accurate be kind to yourself.

Which brings us neatly to

Be kind for everyone is fighting a hard battle.

You my fellow parent, if you care for a child with additional needs you are fighting a hard battle. The person who has parked in a disabled space with no badge, I have less sympathy for.

The Local Authority responsible for providing care and support for you, your family and your child? Well they are paid, and should be working on your behalf.

For most special parents this could be adapted to Be Kind for everybody is fighting a hard battle with the Local Authority. It shouldn’t be accurate but there we are.

What cannot be cured must be endured

Must it? Well in reality yes, and emotional resilience, the ability to bounce back and keep on keeping on is useful tool in the special parents armour. I would argue however that you need to find people who get you, family friends, parents in the same position, so you can endure it with a better grace together. It may be that you can (whisper it quietly) even enjoy it!

I will leave you with my current personal favourite, which happens to be biblical but I think describes us, our children and our struggles well no matter what beliefs we do or do not have.

 But we have this treasure in jars of clay

We are afflicted in every way, but not crushed; perplexed, but not driven to despair, persecuted, but not forsaken, struck down, but not destroyed.

As I frequently find myself perplexed, despairing and feeling forsaken this curiously helps me. Despite all this I am a treasure in my 47 year old body, as is my beauteous daughter in her tricky, muscle weakend, wobbly, treacherous, one.

We are all the same no matter what our abilities or disabilities and that,to me is rather wonderful..

Happy?

In which I ponder the black dog, his habits and my reluctant relationship with him.

This post was initially published on Firefly.You can see the original here

 

I have always been a big thinker. I don’t say this out of pride, in my experience it is not necessarily an advantage.

 

An introvert adolescent and the youngest of three, I spent plenty of time alone growing up. I didn’t mind.
I liked reading. I liked thinking. I very clearly remember saying to my mum when I was about four ” but what is a human being?” The philosophical thoughts of a preschooler are enough to make most parents shudder, but I’m not convinced my thoughts have moved along much.

 

The main problem of having a mind of your own is that you have no one else’s internal workings to compare it to. Your normal is the normal.

 

When does being a loner, a thinker, a ponderer, tip over into something pathological?

 

Are all introverts depressive? In an attempt to resist over thinking this I’ll tell you how it is in the grimy recesses of my brain.

 

Depression to me is hard to explain and harder to admit to. It colours  other people’s perspective of you. Go to the GP and I believe a little flashing link appears on the case note screen.

”I think I’ve torn a ligament Doctor” “And how long have you been on the antidepressants Mrs. Scott?” (I exaggerate but…)

 

I have long felt that any bad health I experience, physical or mental is a character failing. If only I worked harder, ran faster and was an all-round better person, I would not experience this thing. As my excellent GP really did say “you are extraordinarily driven” Well duh?!Through sheer force of will I can, I will, be better!

 

Oh dear, that definitely sounds like the workings of a depressive brain. Couple that with the fact that I think I’m probably putting it all on. A double whammy.

 

Also, if I’m not depressed I’m happy. I don’t really do in between. I feel things extremely intensely, or I’m depressed when I don’t really feel anything at all.

 

In the absolute grip of it I long, long, for it to be over.

 

So what is it?

 

An absence of feeling. An abundance of desolation. A loss of appetite for food, drink, touch, smell, life. A deep hole which seems impossible to scale the walls of. A heavy sadness in my very bones. An utter and total loathing of myself, and a certainty that my family, my friends and indeed the world in general, would be better off without my draining existence.

 

Where does it come from? I know it comes from a lack of serotonin. I know that. But how, and why, and where has my quotient gone? Does somebody else have my measure? Is my happiness so happy I spent all my serotonin on a good day? Where does it go?

 

I lie some mornings in bed, sniffing the air. Is it here?  Has it gone? It’s gone! I leap up! Oh. No Still there. On days like this I would amputate my own arm with no anaesthetic if someone told me it would make that thing, black dog, cloud, slough of despond, go away.

 

Sometimes I sense it creeping up on me. If there are too many hospital appointments or LA fights, I keep my wits about me and take action before it settles in.

 

Occasionally its stealth amazes even me. It quietly whispers into my unconscious brain “you’re worthless” So quietly that it becomes background unquestionable fact.

 

Most of all it lurks invisibly. People don’t see it in me, I keep it well hidden. Well would you go out in public if you felt like that?

 

Recently I’ve been naming and shaming. Get it out there in the light, show it up for what it is, in the hope it will burn up and fade.

 

Mainly at the moment I thank Big Pharma for the little white pills. They contain the right dose of my elusive serontion. I have hated them, I have resisted them, but now I welcome them.

 

Just now, right at the moment they help. They can’t solve my problems but they can smooth over the rough edges and help me muddle along.

 

Isn’t that all that any of us can really do?

 

10 Things You Didn’t Know About Me.

 

I’m not sure this was exactly what Mum on a Mission had in mind when she set day 2 of #30daySEND bloggers challenge. I know she has an excellent campaigning blog in mind, but I’m feeling egocentric-so settle down, or switch off as the mood takes you. If you find you already did know them, consider yourself one of the inner circle. Welcome to my world.

1. I  judge people on coffee. I’m very polite, you’d never know. Instant coffee is NOT coffee. Similarly decaffienated-what’s that all about then?

2.  I love antique and vintage things. Before blogging I had a little Vintage business Pearlie Queen Collectables (that child gets everywhere) selling homewares and decorative glass and ceramics.(Oh and owls.That is a whole other story) My eldest used to help and we sold at fairs and markets always dressed up vintagely.

3.  I was a committed Christian. I think I still might be. Since Pearl, I have had a real struggle over faith, meaning and the purpose of life. It all appears to me to be very random, and some of the things said to me about healing, strength and being a special parent really haven’t helped. Still on a bit of a journey of discovery on this one. Suspect most of us are.

4. I worry. All the time

About money. We are in a very fortunate position, but are both employed by my husbands business. What if it fails?

About health. What if I die or become really ill? What if the Mister does? Who will care for a small special Pearl?

About the future, do I have the stamina to care in the long term?

About Pearl’s health, what if the epilepsy gets worse? What if her mobility deteriorates?

5. I can’t bear people making assumptions about me based on my appearance, gender,accent, politics or beliefs. I can become quite aggressive if I see someone doing this to someone else too. I try very hard to rein in my own assumptions when meeting others, and make every effort to notice those I do make. Unless I see someone drinking decaf   instant coffee, then all bets are off.

6. I have a tendency towarsds depression. It’s hideous when it’s here, but it is possible to live with it, and I have had plenty of practice. I believe in Citalopram, exercise and occasional hibernation.You absolutely do not have to be afraid of me because of this, I am a master of disguise, with a well chosen outfit, the right amount of slap, and an impressive smile you would be none the wiser.

7. I am a little bit obsessed with clothes. And styling. And design. And handbags. Oh and shoes. It’s getting worse as I get older. If I see a stylish soul out and about I compliment them. Complete strangers. Mainly people are delighted, except my teenage daughter, who if with me, is mortified especially when it’s her friends I’m complimenting.

8. I am tired and emotionally wrung out much of the time.

Tired of fighting the system for provision that is necessity not luxury.

Tired of wrangling a small girl who can’t bear the ordinary routine of dressing, tooth brushing, and washing.

Tired of the smell of nappies in the house.

Tired of handling people’s stares going out.

Tired most of all of being patient, understanding and reasonable. Surely  it is my turn to have a meltdown in public?

I am basically tired of being the grown up and would like someone else to take a shift.

 

9. I  love to laugh. Generally,despite everything  I find life to be lovely, people to be fabulous and nearly every situation potentially hilarious. Unless the black dog is visiting obviously and then-well more if that on a future blog.

10. I hate waste. Medicines that have not been opened or used have to be thrown away?Really? Splints that have been grown out of into landfill? In ‘Austerity Britain’? This does not sit well with me.

10.5 ( Oh go on, humour me) I think T.K.Maxx should be offered on prescription:

“take 2 hours browsing at least once a month. In  emergency cases of extreme fed-upness  enter immediately and do not leave without an unnecessary tea towel or mug.”

True Story.

I leave you with a picture of a Radley Handbag I bought from a charity shop, neatly encapsulating points seven and ten.

 

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You are most welcome.

 

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