Girls Grow Up…

…so let’s talk about girl stuff.

Let’s start with the obvious – little girls grow up to be big girls!  What is not so obvious though is how to support our girls on the spectrum as they approach and hit puberty.

Autistic girls may need more support and preparation for all the changes that come with growing up.   Not only is change hard but the hormones raging around can manifest in different ways, particularly behaviourally.  This can be very confusing and unsettling so an increase in anxiety around puberty is not uncommon.  Anecdotally girls on the spectrum are more likely to reach puberty at a younger age too, so being prepared is key.

You know your daughter best so you will know what approach will work best for her, but generally I’d say making the information available to her in a calm, neutral way is important so that surprises don’t happen. I think a lack of preparation is generally more traumatic than any potential anxiety in knowing about what is to come.   I also suggest non ambiguous language when discussing anything connected to puberty.  Use factual words like ‘period’ rather than euphemisms or slang like ‘Aunt flow’.

If you are at a loss and worried about how to support your daughter as she approaches puberty here are a few ideas:

Books

Remember our girls usually like facts so this is why I suggest books as a starting point.   I don’t think you can ever be too young to start having knowledge, in age (or cognitive) appropriate ways, about what growing up will entail for you and your body.  That is why I believe having books around that your daughter can dip in and out of at her own pace is important.  The visual, and demand free aspect of looking at a book is often easier than the demands and intense emotions (eg embarrassment, confusion) associated with a personal chat with you.

There are a huge number of books out there to help, suited to all ages, so search around.  Your local library will also have books like;

https://www.amazon.co.uk/Whats-Happening-Girls-Facts-Life/dp/0746069952/ref=sr_1_1?ie=UTF8&qid=1519643404&sr=8-1&keywords=what+is+happening+to+me

https://www.amazon.co.uk/Girls-About-Periods-Growing-Up-Stuff/dp/0340878282/ref=pd_lpo_sbs_14_img_1?_encoding=UTF8&psc=1&refRID=1ZX4S7GFA5X1ZNK1Y76Z

https://www.amazon.co.uk/Hair-Funny-Places-Babette-Cole/dp/0099266261/ref=sr_1_3?s=books&ie=UTF8&qid=1519643732&sr=1-3&keywords=hair+in+funny+places

A book I recommend specifically aimed at girls on the spectrum is;

https://www.amazon.co.uk/Whats-Happening-Ellie-conditions-Sexuality/dp/1849055262

Underwear

As girls’ bodies change, the need for different sorts of underwear can bring its own challenge.  The feeling of a bra can be insufferable for sensory sensitive people.

Seam free underwear is widely available now and starting with vests, then crop tops/sports bras may help a transition to bras. Build up wearing them for twenty minutes initially, or only overnight, or only during sports, and work her way up to longer.

Remember though that many adults don’t wear bras so ‘pick your battles’.

If her breasts are small and it causes more aggro to try and wear one, is it worth fighting over?    As her breasts become larger and/or she takes part in sporting activities it may be more important to find an option that works for her.  Again be led by her, and seam free may be a good starting place.

Most supermarkets and many high street clothing stores stock a range of seam free/seamless underwear and it is widely available on line too.

Examples are;

http://www.marksandspencer.com/seamfree-matching-items/p/ds04540a74fa838173c23ea97e7dba99b5?prevPage=plp

and I know a few who would particularly like this zebra print from Marks and Spencer😊

https://www.peacocks.co.uk/girls-2pk-seam-free-brief-blk-bl.html

http://www.smartknitkids.com/Products/undies.html

https://www.sensorysmart.co.uk/

Sanitary Products

The biggest change is of course when periods start.

Everyone reacts differently but on the whole, forewarned is forearmed.

The sight of blood can evoke an extreme stress reaction but preparation can ease the trauma.  Others will take it entirely in their stride.  Either way she will take her lead from you, so calm positivity rather than panic, pity or dread is the way forward!

Having rehearsals with pads is a good idea to get her used to the feeling.  Practice showing exactly how to put a pad in her pants. Details like when, how, why, how often and what exactly to do are important.  Clear conversation about how to keep clean is also important.

You can’t let any embarrassment cloud any instructions.

Being open regards to your own periods, if relevant, is also helpful.

Having relevant products in the house from early on is important too to get her used to seeing them, handling them and having them.

‘Sanpro’ companies do specific teen ranges and the little starter pack from Lil-lets is the ideal introduction;

https://www.lil-lets.co.uk/products/teen-range?gclid=cjwkcaia_c7ubrajeiwapczi8f3dafajdezrh9ynxu5hzgq0lo41ane3kplopgbr1njo3c2h6o8g3boc6zcqavd_bwe

Many sensory sensitive girls don’t tolerate disposable pads but there are alternatives available to try like reusable pads (and depending on age and flow; cups and period knickers).

There are a huge number of companies out there with their own variation so look for what matters to you, be it fabric/pattern/environment/supporting a small producer etc.

Some suggestions are;

https://www.etsy.com/uk/listing/551005602/interlabial-pads-random-set-of-5petal?ga_order=most_relevant&ga_search_type=all&ga_view_type=gallery&ga_search_query=lorraine%20makes&ref=sr_gallery-1-1

http://www.cheekywipes.com/cloth-sanitary-pads-kits.html

https://www.babipur.co.uk/reusable-menstrual-cups-pads.html

https://www.earthwisegirls.co.uk/reusable-sanitary-towels-c-1.html

http://www.honouryourflow.co.uk/

http://www.boobalou.co.uk/information-2/information-advice/cloth-menstrual-pads/

http://luxurymoon.co.uk/index.php?main_page=index&cPath=3

https://wuka.co.uk/

(*disclaimer – these are not recommendations as I do not have first-hand experience of these products)

There are also websites/YouTube channels dedicated to periods and becoming a teen;

http://www.becomingateen.co.uk/home

https://www.youtube.com/user/beinggirl

https://tampax.co.uk/en-gb/tampax-articles/my-first-period?gclid=CjwKCAiA_c7UBRAjEiwApCZi8co7Li25icBYuqFd0zzW3qE6oXj–bxVYEhVbIWcd1ma3yZ6iK3U3xoCMnoQAvD_BwE

Calendar

Encourage tracking from day one.  Teach her to log her period days in a diary/calendar so she can identify a pattern.  This will help manage any potential anxiety especially once a pattern presents itself in terms of regularity.

A diary will suffice but there are apps out there designed for the purpose.  Word of warning – just check they are age appropriate content wise before setting her loose on one.

 

Finally, remember that she is still your little girl even though she is turning into a big girl and, this is the harder bit, remember her hormonal outbursts are as much a cry for help as her new-born mewling was not that long ago!

 

Image features;

Marks and Spencer underwear http://www.marksandspencer.com/seamfree-matching-items/p/ds04540a74fa838173c23ea97e7dba99b5?prevPage=plp

Lil-lets teen range https://www.lil-lets.co.uk/products/teen-range?gclid=cjwkcaia_c7ubrajeiwapczi8f3dafajdezrh9ynxu5hzgq0lo41ane3kplopgbr1njo3c2h6o8g3boc6zcqavd_bwe

What’s Happening to Ellie Book https://www.amazon.co.uk/Whats-Happening-Ellie-conditions-Sexuality/dp/1849055262

 

***I have not been paid to promote or endorse any products mentioned in this article.

 

 

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The Importance of a Diagnosis

“The lack of a diagnosis, or label, gives rise to such confusion and uncertainty that the impact on mental health is well documented.  One could argue therefore that a label or diagnosis isn’t just a privilege but a necessity.”

I’ve been meaning to write a post about this since I started this blog.  I have so much to say that I let myself get distracted to the point of saying nothing.  I couldn’t decide how to frame it, contain it and get it all across.  Today I have decided just to start and let it spill onto the page.

There seems to be some confusion amongst some people we come into contact with during our journey.  Mainly professionals or workers on the periphery, to be honest, rather than anyone intensely associated with our journey, but there is this faction of people who think a diagnosis is a ‘label’. *add negative connotation and sarcastic tone of voice for dramatic effect!

These are some of my thoughts about this.

What is so wrong with labels?  We are all labelled and categorised throughout life.

Some examples that I am or have been labelled with are; First and most obviously my name but also; Mother, daughter, wife, sister, chef, writer, blogger, carer, painter, reader, foodie, friend, crohn’s patient, driver, shopper, customer, consumer, swimmer, ‘A’ grade student, winner, loser, runner up, interviewer, interviewee, applicant… you get my gist.

What these labels all have in common is they are descriptions of me.  Not necessarily me in my entirety but in the context of the use of the ‘label’ the relevant part of me in that moment.  None of them devalue any of the others. I remain all of me which ever description you use.

So when it comes to a diagnosis of Autism why do some people suddenly assume it’s a bad thing?

As Carly Jones so eloquently stated “A diagnosis is an absolute privilege…to have the correct label is amazing.  All these differences are not deficits”.

A diagnosis is a privilege – one regularly hears people reporting relief at finally having an answer to something after a period of ‘not knowing’, whether it is medical, mental, emotional or academic.  The certainty of a name, a definite – a label, is unquantifiable.

The lack of a diagnosis, or label, gives rise to such confusion and uncertainty that the impact on mental health is well documented.  One could argue therefore that a label or diagnosis isn’t just a privilege but a necessity.

The correct label empowers someone to accurately describe themselves.  It gives them a ‘club’ to belong to and answers the basic human need to ‘belong’.  It gives them [part of] their identity.  Self-Identity is critical to self-acceptance and mental well-being.

It also gives validation to their experiences.  Acknowledging what they have described and their account of their life.  It illustrates that they are seen, heard and believed.  It is validating and it is accepting of their true self.  It is empowering.

It provides useful shorthand to describe something to others.  It acts as an access key to supports and assistance.

It also prevents the opportunity for mislabelling.

Have you ever been wrongly labelled?  The injustice and extreme frustration of being falsely labelled can have devastating consequences.  Imagine being given the wrong medicine because of the wrong medical diagnosis.  Imagine being falsely accused of something you haven’t done or even falsely imprisoned.

I wonder if the people who think labels aren’t important have never been mislabelled?  Maybe you only feel the power of a label when you have been mislabelled or remain unlabelled.  In other words lacking the one you need, the one you deserve, the right one.

I will always fight for a diagnosis for my girls.  Whether they are diagnosed or not, they are who they are.  Their autism doesn’t disappear just because a doctor hasn’t called it that yet.  I believe getting a diagnosis is acknowledging their true identity and giving their experience a name.  In diagnosing, or as some would say, ‘labelling’ them, I am showing them how much I love them for who they are.  That is the key for their future, their self-acceptance and ultimately their self-worth.

‘Tis the Season

The anxiety is ramping up.

Little Miss H is leaving her communication book on my pillow each night.

DSC_1828.jpg

She’s crying after school each day, she’s not settling at bedtime.  She’s struggling and she’s micromanaging every tiny detail of the upcoming weekend.

You see Mr H and I are going to a party.  Well actually it’s a bit more than that, it’s a black tie ‘do’, I know, super fancy!  It’s being held at a hotel and we are staying overnight.

The logistics and preparation for this have been huge.  We don’t have child care on tap.  We have one family member who we can call on for occasional special events but their work schedule is such that it takes a lot of planning and preparation so we never do anything spontaneous and to be honest the girls wouldn’t manage that anyway.  We don’t have day to day help and we muddle along ourselves.  Mostly we’re cruising, Mr H and I are a great team and largely it’s a well oiled machine.  He carries a lot of extra on top of full time work because of my health and the girls’ needs and things can get a little bit chaotic and sometimes quite frankly it’s a diabolical farce!

But this weekend we have our trusted babysitter, Bee sleeping over.  It’s a first, so understandably the anxiety is building.  The girls have known her for two and half years and absolutely adore her.  She’s like a fun auntie/big sister to them but she’s mature, trustworthy and dependable so I am relaxed.  She young enough to be fun and get down on the floor with them but also old enough that she’s an adult and doesn’t take any nonsense from them.

I’m totally relaxed about it, I have no doubts at all and I KNOW all will be fine.

Little Miss H’s anxiety is breaking me though.  My heart shatters with each tear that rolls down her porcelain cheek.  With each quiver of her lip my ribs contract and squeeze my heart until it hurts.  With each anxious detail she tries to micro manage another stone forms in the pit of my stomach.

This should be a super fun adventure for them.  Instead Little Miss H has the weight of the world on her shoulders, even down to planning the menu and working out how long the pasta takes to cook for her tea.  At her age it never would have crossed my mind, all I would’ve thought was ‘great I can stay up late, eat chocolate and watch TV’!!

Instead my Little Miss at the age of nine needs all the details of every second, both for our itinerary and hers.  What is happening when.  ‘What happens if it’s all different?  Different from how you do it Mummy?’, ‘what happens if she doesn’t wake up when I need her?’, ‘will she let me cuddle her?’, ‘what happens if tea doesn’t taste the same?’, ‘when will you get back?’, ‘where will you be?’, ‘can we what’s app?’ , ‘I don’t want you to go’ and so on.

My Little Miss is a bundle of nerves and worries.  We have drawn up a plan.  She has a script.  She has had food cooked by Bee before and it was fine every other time I remind her.  Bee WILL wake up and always cuddles her whenever Little Miss allows it.  The things we know are true are uncertainties and doubts in Little Miss H’s anxious whirlpool of thoughts.

Tiny will be demanding and hard work but ‘fine’ until she’s too tired then she’ll be a tricky customer but Bee has experience of that so at least it won’t come as a surprise!

I need to relax on this night away.  I haven’t had a break for a year and that was one night away locally with my cousin, which was brilliant but not even 24 hours.  Mr H travels with work and whilst I know he is working hard while he is away, it is a break from routine, it is a break from the squawking, the screeching and the screaming, it is a break from the mundanity, the constant demands and the take, take, take.  It is a change of scenery and a chance to miss us and it is a chance to be him and be good at something other than parenting.  Yes, I know it’s not relaxing like a holiday but it is fortifying for the soul and the psyche.

I need a break from the routine, the stress and the demands.  I need to be me, just briefly.  I am Muuuuuuuummmmmmmyyyyyyyyyy, carer, teacher, nurse, chef, pot wash, taxi driver, administrator, advocate, arse wiper, puke cleaner upper, skivvy, maid etc all the time.  Just for one night I need to be ME.

Switching off is nigh on impossible when I know how anxious Little Miss H will be feeling and how avoidable it is and how I am the cause of it.  So, I have to lock that guilt away.  I have to work at having fun and switching off.  Because to be honest I won’t really switch off… I’ll just be masking, pretending and mimicking. The irony is not lost on me. That in itself is exhausting so I’ll come back even more tired and I’ll have the fall out of the change of routine to deal with.  It’ll take a couple of weeks to get back on an even keel but with Christmas coming that won’t be easy.

Do I get an insight into how it is for Little Miss H every day of her life?  Yes, I do.  Is it worth it? Yes, it is, not just for all I will learn about masking and mimicking but for the chance to (pretend to) be ME, just for one night.  The more I practice perhaps in time it’ll get easier and a night away will be the break I so need it to be.

Until then, I can’t wait to wear my posh frock and my glitter shoes, to eat, drink, dance and be merry.

I’ll raise my glass to you all and toast my night of pretending to be ‘me’!

fashion-957158_1920

Is Understanding SPD the key to helping someone experiencing a meltdown/shutdown?

Please enjoy my article published in emagazine Crixeo for October which is Sensory Processing Disorder Awareness Month.

https://www.crixeo.com/sensory-processing-disorder-autism/

 

 

Girl on the outside

I sit here with tears streaming down my cheeks wondering whether you’ve noticed that the girls were mean to you today.

I suspect you have, as you’ve needed dark quiet since we got home, you were pale and withdrawn.  You went into shutdown.

I could see you desperately trying to be one of them.

I know you don’t know how to join in and I feel like I’ve failed you.

My heart breaks that you’ll never truly relax in social situations, it must be so exhausting for you.

I want to wrap you in my arms and make the world a kinder place.

 

I sit here with tears streaming down my cheeks, the mean girls excluding you ignites a flame of angry sadness within me.

I feel fiercely protective and want to rewind the week. I watch you try and I see their subtle rejection.  It’s sly, almost imperceptible and sophisticated beyond your years.

I pray you don’t notice and don’t feel that searing burn that rejection from a friend brings.  The betrayal, the apparent about turn.

But I see you notice something is off.  Your friend who you normally giggle with is cold shouldered and aloof.  She’s trying to impress an older girl and your sweet naivete isn’t cool enough.

Your confusion is encoded in your eyes and body; a language only I can read.

They are slightly taller and walk at a pace just faster than yours, their step in time, you a few feet away, trailing, rushing trying to keep up.

They whisper about secrets from their sleepover the night before, you know nothing about as you’ve only joined today.

They look to each other before deciding what to do next, your opinion irrelevant in their eyes.  They know you’ll fall in and do what they decide.

Their quiet confidence a stark contrast to your permanent internal questioning.  Their certainty that they belong, you the outsider, the visitor, the spare wheel.

I’m sorry my darling girl.  I feel I’ve failed you.  You don’t know how to join in, you don’t know how to be one of them.

We’ve tried to rehearse and practice but you avoid that sort of help from me just now.

I’m powerless to change the inevitable world you’ll face.

I’ve met them throughout my life too; the mean girls, the subtle exclusion that wields power over the one who doesn’t quite ‘get it’.

I wish I could make it easier, I wish I could make it fun.

Instead I say to you – “do ‘you’, be ‘you’ and be proud of who you are.”

Your intentions are pure, your heart is full and your soul is kind.

You are perfect and in the end you will find your tribe.

It won’t be easy and it won’t be quick but whilst you are waiting, be true to you.

Do what you love, be who you are and perfect the best version of you that you can.

It’s ok not to know what others can do naturally.  They don’t know what you can do excellently.

My promise to you is that I will never tire of trying to get people to be kind and compassionate.

I can’t promise to make people be different, as human nature is beyond my control, but if I can persuade people to behave differently then at least some good will have come from all of this.

In the meantime darling, I know you will continue to want to be friends with these people and I know they will confuse you.  I will try and enlighten that confusion but know I am always here to hug away your sadness or to give you quiet, dark space to decompress.

You are safe and I am the bubble around you that will keep you safe.

To the girls who were mean to my daughter I say;

Being a girl is hard and I know you are sweet inside.

I know you still play and giggle but I see you growing and changing.

You test the waters of growing up, dipping a toe into being a bit older

and playing older games that you make up as you go.

My daughter tried.  She can’t keep up, she’s wired differently.

Please be kind, please accept her as she is and please let her go gently when you inevitably move on.

I’m not an Anxious Parent…. normally

Regular followers know that Little Miss H is autistic.  She is a master masker and the way her autism affects her is not always readily visible to others.  She internalises.  So a child who flaps externalises their anxiety or over-stimulation, Little Miss H has the same reaction to various stimuli but instead of flapping her hand/arm, her stomach muscles do the action instead so her innards clench and squirm, she gets extreme butterflies in her tummy and her heart beats faster, her reaction is private, hidden but no less there and no less real.

I can read her signs and can see the stress usually, but I am her mother and I know her well.  Others generally can’t.

She’s a master masker and it can take years to see the real her especially if you only see her occasionally.

We go to appointments and the moment the practitioner appears, her personality changes.  Her mood shifts and her behaviour alters.  She’s Selective Mute as well, so often she folds in on herself both physically and vocally – her head shrinks down in between her shoulders like a turtle’s neck retracting, her head tilts down and she barely looks up, she positions herself behind me or into my side and goes quiet, her voice changes, both tone and timbre.  Sometimes timid, sometimes gruff.  She becomes I child I don’t recognise.  I’m beginning to get familiar with some aspects of these sides of her and learning ways to interact with her when she is like this but it’s not something we get to practice as it only happens in certain situations which we can’t replicate so it’s not something I am familiar with enough to be the experienced confident mother.  I’m practicing on the job if you like!  Sometimes she’s compliant but shy, sometimes she’s aggressively resistant, sometimes she’s silent, sometimes she answers questions, sometimes she doesn’t tell the truth as she just says what she thinks they want to hear, sometimes she shouts, sometimes she whispers.  Sometimes she’s scared, sometimes she’s angry, sometimes (though rarely) she’s fine!

I never know which way it is going to go, it all depends on so many variables; who else is in the waiting room, time of day of appointment, whether she’s hot, hungry, thirsty, how her day has gone so far, whether the practitioner is a male or female, whether they are warm and welcoming or cool and professional, how they greet us, and so on…..  She can sense when someone is analytical rather than open and she feels on edge by that.

It’s not like she shifts into one single other persona that I recognise and am familiar with – her reaction is unpredictable and erratic and as a result I’m working it out as I go, whilst also trying to achieve whatever the appointment is about.  I’m testing the waters with my daughter as I go, walking on egg shells trying to prevent a meltdown, trying to focus on getting the important information across, trying to maximise the preciously short appointment time as any future appointments or help depend on this one achieving its aim….

I therefore can appear surprised, distracted and anxious – but that’s because I’m in the room with a stranger and as a mother to that stranger I’m having to make it up as I go along.  I’m thrown and I don’t know what is right.  If my ‘parenting’ in that moment is unsuccessful it’s because it’s all new to me and I’m feeling around trying to find what works.  It doesn’t mean I am a bad parent.  If I contradict my daughter it’s because I’m telling the truth and am not being dismissive or neurotic.

So to the practitioner I say;

If I speak to my daughter in a certain way, say certain words, try a certain strategy it’s because it HAS worked before – that’s why I look surprised and flounder when it doesn’t work in front of you.

I feel the full weight of your judgement on me.  I’ve been blamed too often for my daughter’s hidden disability so yes I am anxious when familiar territory abandons and fails me.

So please understand that if I appear anxious it’s as a RESULT of my daughter’s erratic behaviour and not as you so readily presume, the cause.