Turning a Negative into a Positive

Two years ago, I set up this blog and Facebook page to turn our negative experience into a positive. To tell the story of our little family and what it is like to deal with Autism, an auto-immune condition and a rare genetic disorder.

The aim was to highlight our challenges, specifically autism in girls and to raise awareness so no one else had to go through what we have.

For those who don’t know, I was falsely accused of child abuse because some people within social care disbelieved my girls’ diagnoses and thought I was making it all up.  They misunderstood the challenges we face, the struggles we deal with.

In essence, I was accused of Munchausen Syndrome by Proxy in all but name.

It was a harrowing experience to be so fundamentally attacked all due to a lack of understanding of autism and particularly how autism presents in girls.  My character was assassinated, my life was scrutinised and I was ripped apart.  After the protracted and soul-destroying fight to clear my name, I resolved to do everything in my power to increase understanding of autism in girls.  My hope is that improved awareness may prevent the same happening to anyone else.

I still suffer from PTSD as a result of the false accusations and I am still healing.

We still have no support but we remain determined to be the best parents and advocates we can be for our girls.

So here we are two years on with nearly 13,000 followers.  What have we achieved in that time?

  • We’ve attended conferences and consultations.
  • We’ve filled out forms and reports.
  • We’ve written articles that have been published internationally.
  • We’ve been interviewed online and on the radio.
  • We’ve been a friend.
  • We’ve been a port in a storm, an ear to listen.
  • We’ve been company on lonely days.
  • We’ve been a reference tool and a sounding board.
  • We’ve been a safe place to vent.
  • We’ve had great discussions.
  • We’ve shared information from far and wide.
  • We’ve sign posted some to places they wouldn’t have known to look.
  • We’ve reassured and sometimes educated.
  • We’ve made people smile.
  • We’ve celebrated achievements (yours and ours).
  • We’ve commiserated challenges.
  • We’ve suggested solutions.
  • We’ve helped some achieve a diagnosis.
  • We’ve made a difference in people’s lives.
  • And we will continue because;  We hear you.  We see you.  We Get It.

There’s still so much more to do.  Change is still needed but it is possible, so we will continue.

So thank you for being here. Thank you so much for being part of the H2Au story.

You are our tribe.  You are our support.  You are helping us heal.

You are appreciated more than you know.

~MrsH

 

 

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Why does Autism Awareness matter to me?

“Until no more girls are missed, until no more families are tortured and blamed, we will tell our story.  Because it makes a difference.”

We’re coming up to April, Autism Awareness Month and it got me to thinking about why I blog.

Sometimes it is hard sitting here behind a computer screen.  Putting myself out there open to criticism, open to scrutiny.  I have no idea whether what I am posting is what you want to see, whether it helps, whether it helps you understand something you previously didn’t.  Sometimes I feel very vulnerable sharing information.  Sometimes responses can feel personal.  Sometimes Facebook limits my reach so it feels like my hard work is wasted.  Sometimes I wonder whether it is worth it.  The reason I do it though is because I want to be the person I needed when I faced the biggest battle of my life so far.  When I was most alone, when I had a mountain to climb and when I was scared.

As regular followers know my focus is girls (and women) on the spectrum because that is what I have the most experience in.  It is also what the world has least experience in, in terms of autism.

Autistic females are serially misdiagnosed, under diagnosed and undiagnosed.  They are misunderstood, dismissed, gas-lighted (or is gas-lit?) and belittled.  They are accused of hypochondria and hysteria.  So are their families.  Sounds like something out of 18th century doesn’t it?  Lack of understanding can sometimes lead to serious allegations.   The consequences of which can be devastating.

We need to raise awareness and understanding about the ‘female’ presentation of autism so that there is no more lack of understanding and so no one else goes through the torture that my family has.

We were victims of a serious lack of understanding which led to dire consequences for us.

You see a lack of knowledge here in Scotland resulted in me being (falsely) accused of child abuse.

Yup, even though my daughter had an autism diagnosis from England, when we moved here the ‘professionals’ didn’t see it, so their first thought was parent blame.  Not, ‘oh she must be diagnosed for a reason, let me try and understand’.

Instead the assumption was that I had a mental health condition and I was fabricating and exaggerating the challenges we faced.  The implication was I had Munchausens Syndrome by Proxy (MSP) or Fabricated or Induced Illness (FII).  For clarity, I do not.

Their patriarchal culture assumed I was wrong before even given a chance to prove myself.  Their ignorance led them to assume I was mentally unstable.

The arrogance to dismiss their colleagues’ diagnosis still befuddles me.  If I wasn’t so offended by the accusations I’d almost be ‘impressed’ at the level of cunning and manipulation they gave me credit for;  I mean in their eyes I’d duped scores of professionals to manufacture a diagnosis. I mean really?  When you think about it, its faintly ridiculous.  However living through such accusations is far from ridiculous.

Where was the compassion, curiosity and desire to understand?

Where was the assumption that the family should be treated as intelligent and capable?  Where was the respect?  Where was the acknowledgement that as the old saying goes ‘Mum knows best’?

It is no wonder that parents are too scared to listen to their intuition these days, as when they do they are so readily dismissed.

The ‘professionals’ weren’t open to anything new, instead their approach was to mount a covert witch hunt all whilst being nice to me.  It never occurred to them that I was right and they were wrong.  They were deceptive and cunning.  The embodiment of wolves in sheeps’ clothing.

Every detail of my life was scrutinised and pulled apart.  The intimate details of private conversations were falsely reported and illegally shared along with other personal information.  My most vulnerable moments were twisted and used against me.  I was misquoted and attacked behind my back by people who behaved as though they were on our side.

It was like a bomb going off when I read the accusations.  My heart was broken.  Shrapnel shattered my world.  All I have ever wanted to be was a mummy.  From the age of three, when asked “what will you be when you grow up?” my answer was always “a mum”.  And I am a good one.  No, actually I’m a bloody good one.  In fact, I am a great Mum.  (I have to keep telling myself this as part of my recovery therapy!)

I adore my girls with all my heart and I am so proud of who they are.  I am so proud of how hard they work, how kind they are and what great company they are.  The fact they are as beautiful on the outside as they are inside is just a bonus.

As a family we work as a team to overcome the struggles.  I’ve learnt anything that helps; from Makaton to massage, therapy exercises to teaching meditation, different parenting strategies to understanding different neurology from speaking to adult autists.  It’s fair to say that I have a good handle on the subject and I am an expert in my children.

My credibility as a parent has been undermined by the accusations and my ability to effectively advocate for my girls has been impeded.  But despite the added stress contributing to my own illnesses I am not quite broken.  Nearly, but not completely.

Garnering the last thread of mental and emotional strength, I fought.  I fought hard.  It was hard.  The fight nearly broke the last of me.  But I succeeded and cleared my name.

Sadly the impact remains.  We’re now a few years later and I still have PTSD (hence the therapy).  The way I am viewed by some is still tainted.  My trust in new professionals is impacted and I am on edge in every appointment.  Part of me is still broken, part of me is still defended, part of me is still scared, in fact I’m terrified.  I’m also outraged and I’m determined.

So that is why I do what I do.  That is why I try and highlight the issues we face as a family with girls on the spectrum.  And that is also why I remain anonymous;  To protect my girls.  It is also why it can be hard to sit here behind the screen wanting to help others.

Then you talk to me.  You make a comment that makes me realise I am reaching someone.  I have helped you, I have kept you company and made you feel less alone.  You tell me about your children, your family and your story.  I know then, I have made a difference in other little girls’ (childrens’) lives, in other mums’ (parents’) lives.  I have made a difference.

We’re in this together and you help me as much as I ever intended to help you.

So from the bottom of my heart – Thank you!

So this is why autism awareness matters to me.  It’s personal, it’s important.  It’s for my girls.  This is why I will keep raising the issues.

Until no more girls are missed, until no more families are tortured and blamed, we will tell our story.  Because it makes a difference.

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.

 

 

A True Christmas Gift!

Kindness matters and so does perspective. Particularly at this time of year.

I don’t often get news from the day at school, but in the car on the way home today, Tiny Miss H proudly told me that she had a part in the nativity play.

A step up from last year when she was part of the crowd; ‘a villager’, so with excitement she announced proudly that she will be the Donkey.  We celebrated, laughing and happy for her, and thrilled that she was so proud.

Then she said something that made me cry.

“I was a King, but I swapped” she chirped merrily.

I know what you are thinking, most kids would be happy to be King so why did she swap?  Was it ‘taken’ from her for some reason?  Why?  How had this situation occurred?  Had she been duped into swapping by some other wily child?

After a short pause she continued;

“Freddie* was the Donkey and he was crying because he didn’t want to be, so I swapped”.

“Oh Darling that was such a kind thing to do.  I am incredibly proud of you….” I started but she interrupted, almost irritated at my apparent stupidity.  She queried;

“What?  Why wouldn’t I?  It’s what a King would do.”  As though it was the most natural thing on earth.

At that moment my tears started flowing.  I can’t tell you how proud that made me.

“Yes, yes, it is Darling.  It’s exactly what a king would do” I choked through my emotion, thinking ‘it’s certainly what a ‘King’ SHOULD do, but in this day and age, how many people do we actually know who would?”  (I’m very proud to know one!)

Her big sister, Little Miss H and I were explaining how you can be kind and generous without doing yourself a disservice.  We wanted to be sure that Tiny fully understood the generosity of her decision.  Little Miss H admitted she wouldn’t have given up the role.  Both the other Kings are Tiny’s friends and one of whom is her best friend, so to readily step away takes immense selflessness, or we worried, obliviousness.  Does she fully comprehend what she has done?  Does she realise that she can’t swap back?  It’s a one way move that I really don’t think many people would make.

Freddie will have the memories of standing proudly on the stage in a cape and crown, forever.  His parents will have their proud photos of their ‘King’ and will no doubt keep their momento programme with his name against the role ‘King’.  In that moment she built up a little boy whose heart was broken.

We explained how very kind it was, what a true Christmas gift she’d given to Freddie, because most people see ‘the Kings’ as really important roles and to give him hers is very precious.

“But so is the Donkey,” she almost shouted.  “Without the Donkey, Mary wouldn’t have gotten there and Jesus wouldn’t have been borned. So the Donkey is REALLY important!”

I asked why she thought Freddie might have been upset then at being the Donkey and she lightly stated that perhaps he was worried about being hot in the costume.

She’s thoroughly content in her decision.  She wanted Freddie to be happy and he is.  More  importantly to me though, so is she.  I will watch proudly as my Little Donkey with a big heart walks with Mary and Joseph.  And I will enjoy watching the three Kings deliver their Christmas gifts, privately knowing they aren’t nearly as precious as the one my daughter gave today.

Merry Christmas!

[*To protect his anonymity, Freddie is not his real name]

‘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

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.