Category: Autism (page 2 of 10)

No, She’s Not Grumpy – She’s Autistic.

If I had to tell you how many times people have commented on my daughter Beans’ disposition as being “grumpy”, well.. I’d completely lose track. It happens daily, really. But the thing is; she isn’t grumpy – she’s almost 3 years old, she’s a toddler, and she’s also autistic.

If you knew she was autistic, you’d know she doesn’t get “shy” around strangers, she actually struggles socially.

If you knew she was autistic, you’d know it takes her a long time to warm up to people.

If you knew she was autistic, you’d realise that trying to get her to give you eye contact or say hello is really distressing for her, and you’d back off.

If you knew she was autistic, you’d know it takes her about half an hour to decide on what item of clothing to wear every morning; and that despite having a wardrobe full of clothes – she only regularly wears about eight items.

If you knew she was autistic, you wouldn’t use the hand dryer right beside her in the public toilet and you wouldn’t mow when she was around.

If you knew she was autistic, you’d understand why she likes her food divided up sometimes.

If you knew she was autistic, you’d be compassionate and understanding when you see me carrying her everywhere – because her legs tire easily, and they hurt.

If you knew she was autistic, you’d know that if the morning routine is deviated from in any large way without warning ; she screams and screams.

If you knew she was autistic you’d know how much thunderstorms terrify her.

If you knew she was autistic you’d know she completely falls apart when she’s itchy.

If you knew she was autistic you’d know that some shoes can take a long time to put on comfortably.

If you knew she was autistic, you’d see how at peace she was when she was playing in water.

If you knew she was autistic, you’d realise that an iPad or an iPod is a parenting tool – not a display of bad parenting.

If you knew she was autistic, you’d realise what an epic mimic and imitator she is, and that she’s processing her world through watching and copying others.

If you knew she was autistic, you’d see that her lining up things and having collections is super calming for her – not funny or odd.

If you knew she was autistic, you’d know that when she’s screaming on the floor and I’m not cuddling her or touching her it’s because she doesn’t like to be cuddled or touched when she’s upset, it’s not because I’m a bad parent.

And finally: if you knew she was autistic you would know that when she smiles – it’s authentic, when she laughs – it’s from the heart, not just there to please you or make you feel recognised. When you see her for who she is rather than what you’re getting out of her, you’d realise that she is so much more than just “grumpy” – and you’d put your judgement aside.

 

Sensory Tool Box.

I was going through Sno’s room yesterday, helping her sort out all the junk she has hoarded over the last few months and we came across a pretty wide selection of sensory tools, so I thought  (with her permission) I’d share them with you. Sno is happy to share this stuff and hopes that in sharing what works for her, she can help other kids on the spectrum, too.

A little bit of background first. Sno is almost 10 years old, and she received her ASD diagnosis almost 4 years ago. Over that period of time we have found what really works for her to self-calm when she’s having a meltdown, and we also know what aggravates her sensory system. We follow the Zones of Regulation program at home (and at school) and after a bit of trial and error, her tool-kit is pretty perfect now.

Sno loves:
Tactile toys.
Deep pressure.
Nice smelling things (particularly citrus and mint).

Sno doesn’t like:
Noise.
Excessive visual stimulation.

Sno’s box of tools resides on her beside table, with her chart of Zones and ideas for each section right beside her bed.

Her box contains:
A stretchy caterpillar toy.
Scented gel pens & colouring book.
A strip of soft purple minkee fabric.
Her iPod and noise-cancelling headphones.
A few stretchy animals.
A homemade visual sensory bottle.
A spiky foot massager.
Her Tangle.
A little pouch containing some Arnica healing balm for bumps & bruises, some cuticle cream for “flicky nail skin”, some homemade essential oil roll-ons (lemon myrtle & peppermint scents) and some pawpaw lip balm.
Soft eye-mask to shut out bright lights.
A few hair coils which Sno uses as fidgets for when at school.

What she uses depends very much on that moment, but all these tools get used regularly. On long outings or car-rides or school excursions a few will get chosen and packed into her small backpack, along with a water bottle, book and a snack. That way she’s always prepared and can self-regulate independently. Being prepared like this results in much fewer meltdowns, too, due to much less masking being necessary.

The Bucket Analogy.

All peeps have a bucket, right. Peeps who are neurotypical (non autistic) have an automatic variety, that empties of its own accord whenever needed.  Autistic peeps though, theirs aren’t of the automatic variety. So this means they need to take breaks throughout the day, and make conscious, intentional efforts as their day progresses to empty it themselves.  If autistic peeps aren’t given opportunities throughout the day to empty their buckets, or if they forget to – it overflows.

And when their bucket overflows: this is called a meltdown.

 

So what sort of things can add to an autistic person’s bucket? Well, it totally depends on the person!

It could be things like:

Itchy clothing.
Plans that change.
Meeting new people.
Music that is too loud.
Really hot days.
Really cold days.
New foods.
The smell of other people’s food.
Social exhaustion.
Hot dishwater.
Hot showers.
Strong perfume.
Being at work all day.
Being at school all day.
Being at kindergarten all day.
Going for long drives.
Going to new places.
Having to make a decision quickly.
Grumpy people.
Loud people.
Other people eating food.
Having a problem but not knowing how to talk about it or not being able to.
Confrontation.
Being pushed to a deadline.
Being given too much information at the one time.
Having to sit still and quiet all day.
Background noise.
Light touching.

.. and the list goes on. All this stuff adds up. If we can consider that our autistic child, for example, has been at school all day, has had to be around new people with a change in routine and has had to travel home in a noisy car – it’s any wonder their buckets are overflowing by the time they get through the door – if they even make it to then!

This is why I will emphasise the importance of preventative breaks.

What I mean by this is regular opportunities for our autistic peeps to chill out, recharge and recalibrate.

This can be done through a multitude of methods, all of which will depend on the individual’s sensory profile and preferences.

Maybe it’s lunch alone.
Maybe it’s colouring in.
Maybe it’s time on the iPad.
Maybe it’s using noise-cancelling headphones.
Maybe it’s chilling out in a cubby alone, reading.
Maybe it’s not talking to someone as soon as they get in the door.
Maybe it’s not asking questions as soon as they get in the car.
Maybe it’s a crunchy snack, and a sticker book.
Maybe it’s a prior agreed-upon talk-time limit, and then it’s quiet time.
Maybe it’s playing computer games.

It really doesn’t matter what method it is, at the end of the day. But it’s about being compassionate and understanding.

Let’s be aware of each others needs. It really isn’t about whether you’re autistic or not, it’s about taking everything into account and being mindful and supportive of each other. Life is hard enough, consider the bucket analogy and help others. It isn’t rocket science.

 

Talking and Communicating are not the same thing.

There’s a reason I struggle with the terms “high functioning” and “low functioning” autism. A lot of this has to do with how autistic traits may appear to the outsider, and how they actually  are for the autistic individual.

People see a child labelled as autistic who is talking with others, giving positive & open body language and fulfilling daily tasks and they assume that they’re a little less autistic than an individual who is non-verbal or who needs support with daily tasks.

This is simply not the case. And it is actually quite judgemental and harmful to assume that it is.

There’s really no need for these “less” or “more” autistic labels. Because they are needlessly divisive. It is all autism and every individual with the diagnosis presents uniquely. Just because you don’t see someone struggling doesn’t mean they aren’t. Autistic people are super clever at camoflaoguing their struggles and these happen silently:

You don’t see their anxiety.
You don’t see their sensory struggles with noise, texture, smell or taste.
You don’t see their social overload.
You don’t see their need for control, organisation & perfectionism.
You don’t see how they hold it all together when out and then meltdown for hours and hours once home.

All these struggles still exist however, but they aren’t always obvious at all to onlookers.

Which brings me to the topic of today’s post: communication.

Just because an autistic person can string sentences together, remember the names of people, places and objects and can have face to face verbal interaction with others doesn’t mean they don’t have trouble communicating. Often they may have trouble with receptive speech, identifying & expressing feelings and emotions and working out the nuances within social conduct – the “grey” areas, like sarcasm and metaphors.

Sno lately is struggling with the process of having a thought or a problem/worry in her mind, and getting that thought or problem expressed verbally. This is for both at home and school. When I asked her how it makes her feel, she said it’s like this huge grey jumble of “stuff” in her head and she can’t work out which is which and what is what – it’s all mixed up and tangled. Basically, getting her thoughts from her head into sentences in her mouth that make sense is really hard. So what tends to happen a lot at the moment is lots and lots of screaming meltdowns because she’s so frustrated and with all this frustration, she still isn’t able to express what she needs to. It’s a really tricky situation for everyone.

So we are going to trial a new concept, to help. Yesterday I bought her an empty exercise book which I labelled and I’ve encouraged her that anytime at home where she thinks of a problem at school, she needs to jot it down in her book with the day’s date and then when she gets to school, she needs to give it to her teacher. The contents of her book don’t need to be complex, just words that trigger her memory so she is able to slowly work through them with her teacher and support person at school in a quiet space. We are also going to access a few psychological sessions for her to aide in the process, too.

I’m hoping it helps, even a little bit. My heart goes out to her, and I only hope this simple idea can provide her with a small sort of anchor to keep her adrift and keep going, keep trying.

If you’re autistic and you experience this similar sort of thing, I’d love to hear from you. How does it feel? What do you find helps?

A Letter To Peers & Their Parents – From, Me.

A thing I do every time my girls get a new teacher (or begin kindergarten) is write a letter, and explain autism and what it means and looks like for our family. I do this for a few reasons:

So I don’t have to repeat myself constantly, and to open up the dialogue about autism.

So others that have involvement in our girls lives have understanding, education surrounding autism and compassion.

So that my girls don’t have to constantly justify themselves.

I place a photocopied letter in each of the kids pockets of the class, with a photo of my girl (s). I thought I’d share Wilding’s letter below. Now please bear in mind this is her letter with her individual sensory and learning accommodations listed. Every person on the spectrum is unique and has their own individual preferences.

 


Hello!

I am Wilding. I’m five years old, and I am autistic. This can sometimes also be called ASD.
It doesn’t change who I am, it just means that I see the world a little differently to most kids my age and feel things differently, too.

Autism is a neurological disability which affects the way I process the world around me. There are some things that really overwhelm and overload me, and other things that calm me. There are things that I can do better than my peers and things that my peers can do that I struggle with and need support with.

Loud noises bother me. And so does unexpected events. When I know what is happening it makes me feel better. That’s why I have a visual schedule.
Sometimes I will go into my little green tent in the classroom for some downtime. Even though I love being around people, I still find socialising tiring and a bit of quiet time helps me recentre – so when I am in my tent, please don’t bother me or talk to me. Then when I’m done and come out, we can play!

I’m really visually sensitive. So this means if I don’t like the way something looks (for example: food) then I might not want to look at it, or watch others eat. Sometimes this may mean I want to eat away from others because the smell or the look of their food bothers me. I’m pretty literal and I say things how I see them; I’m not trying to be rude. It also means that visual things can help me calm down. You might have seen me watching the iPad or going on the computer in the morning for short bursts – this is why. The iPad is a great tool and helps me keep calm during transitions which is something I sometimes struggle with. Seeing photos of new people or new activities also really help me.

Chewing is something I love too. You may have seen my chewy necklace I wear? Mum and my Occupational Therapist got me it and when I chew that it makes me feel less anxious. It means I don’t chew my hands or my shirt or bag, cool huh? If you see me chewing it means I am anxious and so I chew to self-calm.

I love to move! Moving helps me concentrate and stay on task.  So I use a Hoki wobble stool when I’m sitting at the table  so I can keep fidgeting and I have a cute little weighted penguin that sits in my lap and keeps me grounded with deep pressure when I’m sitting on the carpet.

I am a really bright little sprite and I love to do puzzles and I’m learning how to write and read. I know all the letters of the alphabet already and can spell out short words on my own. I also love making new friends. Sometimes I struggle a little bit with personal-space so I may need to be reminded gently about this, but I’m really caring and loving. Cuddles are the best!

I am the third sister in a family of four daughters, and two of my other sisters are also autistic and so is my Daddy!

I’m really looking forward to being part of school and learning and making new friends.

Thanks for letting me tell you a bit about me. See you soon!

From Wilding. (and Jessica & Cj)

 


 

Please feel free to adopt and adjust this idea to use for your child. I find that it really helps with getting the most of out of a learning environment. I usually include a photo of the child the letter is about, too.

Making school autism-friendly; tools we use.

I shared a photo of the tent that we got for Wilding to use as her “safe chill-out space” in school this year as she begins, and many people commented it was great that the school allows that. I was left kind of gobsmacked because I couldn’t fathom why a school would not made such small accommodations for their students with special needs. So anyway, I thought I’d share below what sort of accommodations our school makes for each Wilding (age five) and Sno (who is almost 10).


At the start of each year I also write a letter on behalf of the girls to their peers and the parents of their peers explaining what autism looks like for each child. I find this helps understanding and also promotes education and awareness surrounding autism, and it takes pressure off having to constantly explain myself for the girls too.

A bit of background first. Sno is a tactile seeker so fidget toys calm her and she loves getting her hands into stuff, she is visually hypersensitive so screens and busy classrooms overwhelm her, she is heat-sensitive so sport, hot days and large assemblies in the hall are too much for her and she is pretty noise sensitive, too. She finds social stuff tricky and exhausting. She’s definitely an introvert and loves deep pressure to calm.

Wilding on the other hand craves movement and has well-developed gross motor skills, isn’t fond of getting her hands messy, calms with screens and other visual input as well as oral input,  adores making new friends (however still struggles with personal boundaries and personal space) but is noise-sensitive too. She loves lots of hugs and affection and despite being an extrovert like me (yay!) she still requires a safe space for downtime. She has low muscle tone and tires easily.

So with those sensory profiles in mind – I’ll now share the tools and accommodations we ask the school to make for our girls.

Please bear in mind this is not a sponsored post, I am merely sharing items I find useful that work for our family. 

Sno’s tools: 

  • Sno has a space in her classroom (and in the SEU department) that has her beanbag in it for her to chill out on. The beanbag gives her proprioceptive calming input. She usually goes off to the SEU 15 minutes before class finishes every day so that she has time to wind-down before getting in a car full of her sisters and into the afternoon rhythm. This simple thing gives her room to recalibrate.
  • She has a little box in her chill space. This box contains Theraputty, a Tangle, a slinky and a colouring in book with scented pens.
  • She also has a weighted toy for seated work.
  • She has a lanyard with “I need a break” cards where she doesn’t need to talk and can give one to the teacher without needing to talk. Her lanyard also has a fidget toy in it and some ear plugs.
    She has a talk board (pen and whiteboard) as a communication tool for leaving notes to her teacher on.
  • She uses earplugs (we use Macks brand from Woolies, they’re cheap, effective and easily replaceable) for use during noisy school group sessions and assembly, too.
  • She has a cooling pad in the classroom’s freezer for use on hot days, as well as an insulated water bottle.

Wilding’s tools:

  • Wilding has her pop-up tent in her classroom with a soft cushion in it where she can go to chill out when she needs a bit of quiet.
  • Inside her tent is her weighted toy (which is also used for seated work) and a box of calming visual tools: a magnetic doll-dressing set, a little wooden farm house kit in a tin, a visual timer and a calming sensory bottle.
  • She wears a chewy necklace.
  • She sits on a Hoki stool during class table-time.
  • She has a Camelbak water bottle with a chewy spout.
  • She has plenty of crunchy snacks.
  • She has a separate space for eating if she doesn’t feel up to eating around others due to aversions or overload.
  • She has a moveable visual schedule for the day.

Obviously the tools that each child uses in a schooling (or kindergarten) environment are going to change depending on their own unique personalities and sensory profiles. But these are the things we use and find effective. A lot of Wilding’s accommodations were used in her kindergarten last year, as well, so I have high hopes for their effectiveness this year as she begins school.

Real-world social skill learning with my daughter.

There’s this thing I have been doing with Sno for a few years now. I take her out, just the two of us – and we go and eat lunch somewhere. She picks the location (usually Grill’d, if you’re wondering) but the condition is: she needs to order her own food, so she can practise her social skills.  It became obvious to me a while ago that despite there being lessons on english, geography and art etc within school – there aren’t often social skills lessons. And this is an area that autistic peeps, just like my amazing daughter – could use a little guidance with.

So we practise, together. I gently extend her comfort zones and empower her to use her voice and be heard and ask for things she needs. Something as simple as asking for a serviette or sauce may be a simple thing for most people, but it can be challenging for Sno. So I encourage her lovingly to find her voice.

 


While we are waiting for our food, and eating, we play some little games. Games like: paying attention to the body language of others – what does she think they may be doing/feeling? We enjoy people watching together and I encourage her to guess the stories and feelings of some people we see. Are they happy? Sad? Bored? Impatient? What makes her think that?

After lunch we may go and do a little shopping and I’ll give her my list and encourage her to problem solve and stay on task in busy shopping centres, which she finds tricky but gets better at each time.  If we encounter a problem like a product being out of stock,  or not knowing where to find something – I empower her to ask for help from a customer service officer. We also have discussions over “what-ifs” – what if she gets lost and can’t find me in the shops, what can she do? What if a stranger tried to entice her to go and walk with them, what can she do? What if she accidentally broke an item in the shop, what should she do? We talk about where to find toilets, where to get some water if she needs it. Simple, seemingly obvious stuff.

So why do I do this? Because I’m trying to empower my daughter and give her skills for independence. She is an amazingly intelligent girl, 4 years ahead of her peers academically – but this social stuff, it doesn’t come easily to her. Together on our outings we celebrate her successes and when things don’t go as planned, we work out how we can remedy them next time. So many times she will tell me that she “can’t” do something (like order sushi, for example) but with a little gentle coaching and patience, she does – and she’s super proud. As soon as we are home she writes her achievements in her “I Did It” book, and the list of stuff is getting pretty long, let me tell you.

As she nears the age of ten I am watching her come out of her shell a little more everyday and independently problem solve with initiative, and it makes me so proud. Because I know this shit is hard for her. But I believe her, I’m in her corner – championing her along as she does hard things, believing in her… unwavering.

Guest Post by PapaGirlTribe: Why Access a Diagnosis as an Adult?

Very often I get asked by readers how my autistic husband accessed his diagnosis at  the age of 30, and why he pursued it. And despite my writing very often about my marriage to an autistic man, and educating others on the why and how of parenting autistic girls – this particular question has to be answered only by my husband. It is his voice, his journey. So tonight I’m passing the reigns over to my incredible, amazing husband Cj, to explain the why and how of his journey to accessing a diagnosis of autism as an adult. You can read his post below.

“So my story starts in the middle.  When my wife was coming to the idea that my eldest daughter was on the spectrum. I was against it.  To me she was perfectly normal.  She was everything I was and everything she did I saw as correct because it was me.  Even the little things like liking things ‘just so’ and being particular about certain sensations.  I could connect with that because I recognised it in myself.  To me that meant she was normal, so I couldn’t particularly understand what J was getting at with this whole idea.

But our marriage is based on compromise.  We’re so different there’s no room for poking your head in the sand and being stubborn.  So I took the same position I always do – I disagreed with the idea but agreed with the need to research until we had a definitive answer.  So we made a list.  A list of all the things that J thought were quirky – compared to her normal.  There were a lot of things on the list that I would consider normal, but, again, part of the compromise idea in our marriage is accepting that there are times when you’re going to be totally and completely wrong.  So I strapped in for the ride thinking it was going to be a big goose-chase but still determined to see it through, if only for the sake of my wife having clarity of thought and knowing it was normal.  Fast forward, things happen, culminates in an appointment with a paed.

Now, I managed to have a car accident that morning and the paed appointment was almost immediately after I was discharged from hospital so I am not entirely certain of what went on during that appointment.  But, suffice it to say, S ended up with a diagnosis of then Aspergers, now ASD.  I would be lying if i didn’t say I was confused as fuck.  The kid was totally normal to me.  Considering the process it had taken to get us to that point, rather than doubting the diagnosis, it made more sense to doubt my own opinion.  So I did what I do best.  I asked questions and looked at the details.

I’m firmly of the view that a lot of our truths in life are based on our frame of reference.  Sometimes the easiest way to answer our own questions is to look first at the frame of reference we are using to ask the questions within.  So when S was diagnosed it made me ask that exact question – “Am I honestly looking at the world through neurotypical eyes like I thought I was?  And, for argument’s sake, if I wasn’t would my world make MORE sense if I looked at it from the perspective of a person with ASD?”.  Now this wasn’t a quick process for me.  I had to wind back all the way to when I was a young child and re-view all my memories and struggles with a new filter.  The strange thing was, that with this new filter, I stopped being quirky and odd and I started making sense.  All the things that had upset me as a child and been struggles as a teenager and a young man that I had never been able to reconcile with my normal suddenly had a reckoning.  It. All. Made. Sense.

Not to say I accepted that.  It was another good period of time before I could actually accept that it made sense.  But I got there.  The next logical question for me was what could I do next.  And for me the answer was to talk to someone who knew about it to confirm what I thought.  Now, I do need to digress at this time and make something very, very clear.  I would never DREAM of telling anyone I had ASD unless I had taken the time to access a professional diagnosis.  It is absolutley, totally, cheapening of a diagnosis to self-diagnose and then broadcast your self diagnosis.  So, to do proper justice I needed to access that diagnosis for myself so I could see if what I thought was true.  Several clinical psych sessions later and a whole lot of background forms for both myself and my parents and what I thought was true was confirmed as reality.

I look back on that moment as something of a rebirth moment for me.  It was my ‘aha!’ moment.  It let me look at myself and the things I struggled with and know that my struggles had meaning.  That they were actually neurological challenges that I could overcome with guidance – and why using the logic and reasoning of a neurotypical person was never working to solve them in the past.  Doors that were closed to me I can now open and paths that I had written off as being impossible for me are now possible.  Because now I know how to approach my challenges.

Diagnosis is so important for that reason.  ASD is a disability.  It’s not a fad diagnosis and it’s most certianly not something you can turn on and off.  It’s not little struggles and we’re not all a ‘little bit autistic’.  Autism makes your head work differently.  I can do things that neurotypical people can’t and I struggle do things that neurotypical people can do easily.  It was be foolish for me to say I can now get on with life.  I can in my way, but that would be akin to an amputee saying they’re fine and can function perfectly in the world around them – they certainly can, but they have to adapt themselves to the world rather than waiting for the world to adapt to them.  Diagnosis has given me my prosthetic limbs.  If I wear them right, people around me will never work out that something is wrong unless they look closely.

I have had 30 years to teach myself how to cope in society.  I have a type of autism that makes me a brilliant mimic.  I don’t meltdown traditionally in a screaming, raging mess but rather I retreat inside myself.  I know now what that is and why it happens.  I can work to avoid those situations.  I can manage what I can’t avoid and now, with the help I’ve been able to access since my diagnosis I know what I’m doing rather than fumbling through.  Diagnosis has given me access to the future I thought I couldn’t have.

So when I’m confronted by people saying they don’t want to get their children diagnosed because they don’t want the label it makes me sad.  It’s not the children who are afraid of the label.  The children (or adults for that matter if we’re talking adult diagnosis) will only benefit.  It’s not the person with ASD who will grieve for the diagnosis but those around them.  Early diagnosis is so important to build a toolbox for coping with everyday life.  I’m both lucky and unlucky in the way my condition presents.  I was able to hide it with my ability to mimic for 30 years – and I still am a very good mimic – but being able to hide it also meant I went that long without a diagnosis.


So that’s the why and how.  That’s the middle of the story.  There’s always more.  But that’s where it started to make sense.”

Don’t assume that just because she can talk, she doesn’t have trouble communicating.

Sno is almost ten years old now, and if I used the term “high functioning autistic” (which I don’t) that’s what she would be labelled as.  Because yes, she can speak – and has done so from an early age. In fact, she began talking in sentences from the age of roughly 14 months, and I’m not exaggerating. She does not have any issue with receptive speech or language.

She does, however, have challenges with communication.

What do I mean, exactly? How can one person have issues with communication and yet speak freely with articulation?

Here’s how.

There are steps in the process of articulating thought and verbalising that thought. Going from the concept of a thought or an idea to speech and communication, to be precise. And this is one area Sno struggles.

She will have a problem, maybe it’s a worry or a fear or a personal concern. And she isn’t able to communicate it always. And on those times when she can’t communicate it; she does one of the following: 1) She melts down, screaming, for hours until she finally stops herself and then talks or 2), She shuts down, goes inward and closes off from the world as she internalises.

There’s nothing that can be done to speed up either process. When she’s in this loop, only time and patience will get her out of it and we her loved ones just need to patiently wait it out.

So she will scream, or she’ll just shut off.

This is why generalisations around autistic girls and their abilities or struggles are dangerous. Because there is always more than meets the most common eye. There is a lot of struggle that goes on behind closed doors that you may not have any idea about, unless you’re in their inner-circle of trust

So I will wait, patiently. I’ll remind her that I am here to help her if she wants to talk, and I’ll try not to implode internally myself as I have to sit by and witness her being caught in this tangible loop of limbo, stuck in a place of seemingly relentless in-between. I want to help her, I want to ease her struggle and offer her a lifeline or a solution – but I can’t always, and I definitely can’t in these situations. So I’ll tell her that I love her and that I’m here, and I’m ready to listen when she’s able to talk. And you know, sometimes we use whiteboards to communicate, where she writes her feelings down in words – but that doesn’t always work. Sometimes the screaming or shut downs can pass quickly and we can tackle whatever is taking over her mind, but other times we can’t and it can even go on and off for days at a time.

Just because someone can talk, doesn’t mean they don’t have trouble communicating. There’s a lot more to autism than meets the eye.

One at the front, and another on my lap.

We are total bibliophiles in this house. We own more books than clothes combined. When we moved house (like, 6 times so far *eyeroll*) we had about 35 boxes of books and about 10 of clothing, all up. Yeah.. we love books. Books are our life, which makes sense given I am a writer.

Anyway. Bibliophiles love libraries, heaps. And so like any committed addict we go every week for new crack, for a fresh hit of amazing books and literature. I usually borrow 5 different piles: about 10 for Sno who is the ultimate reader, 4 for Rara, a few for me (usually cookbooks) and the rest for the smalls.

Today’s library visit happened to coincide with Story Time, which Wilding was positively gleeful about. Stories read aloud, songs and craft?! Yes please! She begged us to stay.

So, rendered completely unable to say no to her adorable pleading puppy-eyes we stayed. She had an amazing time: she sat the furthest at the front possible, practically nose to nose with the librarian leading the group. She sang all the songs, answered all the questions and interacted beautifully. Beans, on the other hand – was rendered practically like glue to my lap. She closed in on herself, did not give any eye contact to anyone, didn’t talk at all during the session – not even to me. The noise, people and change in our routine caused her to basically go non-verbal – something we don’t often witness in her, the same child who was talking in sentences at 13 months (I’m not kidding). She basically clung to me tightly the entire time. I asked her if she wanted to go and she shook her head, I asked her if she wanted to stay and she nodded.

She was kinda stuck. Stuck between two places.

We waited it out patiently. Soon the stories were read, the songs were sung. And as soon as the craft came out and people began to spread out a little more across the room – Beans came out of her shell, finally. She meticulously coloured in her craft inside the lines with her beautiful pencil grip and attention to detail, intense focus.

And when it was time to go home, I thought whilst driving – just how incredible autism is. How vast the spectrum, how unique the people on it are. Here were my two amazing girls, both so different but both so similar, too.

One right at the front, and one on my lap. So it is.

 

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