Trapped by Time

The world of a special needs mother

I sit on the peripheral, glancing at the time displayed on my phone
It all comes down to time
Every precious second of it
Time is dictated by my child
Time revolves around him
It's not his fault
It is not mine
It just is

My personal window of time is limited
I can make a plan for extra time
A little pocket of an extra hour, or two, or three
But time always pulls me back in
Back to my child
It's not his fault
It is not mine
It just is

I am constrained by time, or rather, a lack of it
Unlimited time is elusive
Freedom of time is deeply missed
Time is a little gargoyle upon my shoulder
Whispering in my ear... "It's time to go, it's time to leave, it's time........"
Being a slave to time is about responsibility, not martyrdom 
It's about my child
It's not his fault
It is not mine
It just is.

Who understands?
Not many
Who accommodates?
Not many
Who cares?
Not many
The world of a special needs mother
It's not his fault
It is not mine
It just is

The mind boggles!

I finished buying the groceries and went to find my teens.

I found them...... doing typical teen stuff!

Nick closed down the iPad (it belongs to his brother).
He hesitated. There were voices coming from the device.
Nick opened the iPad, went into the app and turned it off.
The voices stopped.
Nick closed the iPad.

Tonight, after supper, my husband asked, "why is the cheese in the sink?"

Nick had cleared away all of his dinner items.
Where did they go?
In the sink!

Sometimes I find autism confusing. And amusing. 

Autism and dental care

Going to the dentist is scary.

Going to the dentist when you have sensory issues, motor planning problems, high anxiety and a diagnosis of Autism makes the experience even more scary.

It has been my job to make the experience easier for my son. My attitude and approach has determined how he has taken on board the challenge.

It's been a slow, yet deliberate process. First off, all that was requested of Nick was to visit the waiting room. Thereafter, he would sit in the same room as me while I had dental work done. A few visits later, he was invited to sit in the dental chair. That is all he needed to do.... sit in that chair without any pressure to do any more. Eventually, on another visit, I was able to gently pull back Nick's lips in order for the dentist to quickly peer inside.

Last year, we had some success. Nick was able to tolerate me holding his lips back to enable the dentist to do a brief scraping of the teeth and a quick clean.

Yesterday, I took both boys for their checkup. The big brother was up first. I chatted to the dentist while he was working, and Nick played on his iPad.

When it came to Nick's turn, we took it slowly and gently. We followed his lead and gave him frequent mini breaks. When I saw the anxiety mounting, I started to count aloud using a soft calm voice. During the mini breaks I gave him a little bit of pressure on his chest. Twice, I reined him back in by using a stern voice.... nothing more than a, "Oye, Nicholas". 
Our dentist was absolutely brilliant and Nick was in that chair for twenty minutes. HUGE! 
Edge plus one all the way. For all of us!

A helping hand from big brother!



Something different!

I took the following with my iPhone, therefore the quality is really rubbish! Sorry.

Our morning stroll

Having some fun practicing words

Time for teeth!

Brushing teeth ~ chapter one! 

Imperative language:   I call downstairs, "Nick, come and brush your teeth".

Stop and wait:   Nick responded within 30 seconds.

Decision making:   Nick took out the toothbrush and toothpaste. He took the lid off the paste and proceeded to squeeze the toothpaste onto the brush. He didn't stop squeezing!

Declarative language :   "Oooh, that is so much toothpaste, let's stop, stop, stop".

Decision making:   Nick hands me the toothpaste.

Declarative language:   "Let's start again".

Defining roles:   "Tell you what, you can hold the toothbrush and I will squeeze the toothpaste".

Declarative language:   As I model how to squeeze slowly, I chant the words "slowly, slowly".

I pause:   Nick takes the brush and starts to chew on it. As one does! :)

To be continued...................

He CAN do it!

It's 6am. I am safely ensconced in the spare bed, fast asleep and dreaming of who knows what. *Note: When you live with a runner who wakes at 4:30am along with an autistic teen who also gets up early, then it's necessary to make a plan!

Nick comes bounding into the room, no concern about my need for a lie in.
"Eat", he signs.
I look at him through bleary eyes. "You will need to get dressed first", I say.
He quickly makes the sign for,"help".
I am thinking to myself, how can I manage to stay in bed just a little bit longer...
"You can do it, Nick".
He wanders off down the hallway, although comes back within two seconds.
"Help", he signs.
"Nick, it's fine, you CAN do it. You need some undies, a pair of shorts and a t-shirt".
He heads off to his bedroom and I can hear a bit of action going on.

Stomp, stomp, stomp go his feet on his way back down the hallway. He stands in the doorway looking at me, making the sign for, "eat". Well, what do you know! He is wearing a pair of shorts, a new pajama top, and I presume his undies. Everything is on back to front.

It works for me 100% and I show my delight that he has managed to get dressed independently. "Did you put on your deodorant?", I ask him. Nick looks at me and nods his head for, "yes".

He is SO cool.

RDI ~ January 2015

I went to a morning workshop on Autism. Don't ask!

After a couple of hours of listening to the speakers, I quickly nipped out to visit the loo (less than five minutes). Fast forward another hour.... My friend, who was sitting next to me, told me that RDI had been mentioned while I was gone. The delegates were told that it isn't possible to implement RDI in schools and that RDI was just for parents, so that they could do stuff with their kids, at home.

Oh really!

I sit here and think about my child. My extremely autistic pre-verbal teen. A boy who is so challenged that he is unable to live independently. I could go on and on but I am sure you catch my drift!

I am irritated. Can you tell? 

I am reflecting on our recent holiday to Zimbabwe. I am remembering how Nick, very casually, coped with a multitude of changes. We don't use visuals, schedules or social stories. Nick was flexible, adaptable, resilient. communicative, engaged, connected and co-regulated. I am aware that we used the iPad at times, however, so did my first born and his cousin. Hell, so did I. Autism wasn't an issue. We had a regular family holiday.

For sure we *do stuff* at home. But we also *do stuff* out in the community. We live an RDI lifestyle. My style of communication is very mindful and this has been hugely beneficial to Nick's progress. Being aware of the 'edge plus one' concept is huge. I am always thinking of the next step.... and Nick takes on that next step because he trusts me! Having a program that approaches natural development from the roots up is empowering. Being part of an intervention that details every little piece of development is empowering. Do I think that RDI will remediate my son? No, I don't. However, what I do know is that because of RDI, we now have a life. Thanks to us implementing RDI, Nick has made wonderful progress and will continue to do so. His life is easier and less stressful.  Although we make accommodations for Nick, our life does not revolve around him anymore. We are a family and we endeavour to have a balance. We live life naturally.

For us, Zimbabwe would not have happened without RDI.

On that note, I am off to a boozy Birthday party for the rest of the day. I am leaving my two boys at home, alone!

Cheers! :)

Reasons to be cheerful - January

Hmmm, reasons to be cheerful?

Well, today has been eventful, although no great shakes. Mind you, digging below the surface I can think of a few things that have made me smile today.

Nick loves going on outings, especially to the shops. In fact we have some really fab moments together when wandering around the grocery store! Today, the cheeky boy nipped off pretty smartly while I was still in the process of grabbing my bags from the car. I had a quick panic attack and made to run after him..... however, I thought to myself.... stop, give the kid a break, he is 15 after all. I slowed down and hung back a bit. To my delight, he stopped and looked around... and kept looking until he found me! Yes!

Late morning, I left Nick at home with a carer and took my first born for his yearly eye test (and mine too!). Am a bit saddened that my eyesight has deteriorated, however, I was informed that my age was the contributing factor! Sigh. On the plus side, we both have very cool new glasses that should be ready in a week. I have had to go the multi focal option. Bit nervous about that. Anyways, will remain cheerful!

Last but not least. I woke up this morning thinking about supper.... as in, the monotony of cooking. Groan. Suggested to the husband that we go out for an early supper. He was keen. Woohoo. Lovely healthy fish and salad with a glass of wine. No dishes. Win win.

This must be the quickest blog post I have ever written. I haven't even checked for errors! Thank you to the lovely ladies who continue to host 'Reasons to be Cheerful. Apologies for not adding your poster or linky. I am working off my iPad, which makes adding all the little extras quite difficult.

Here is today's #project365 instead. It took an age to load.

Finding my calm

I understand the benefits of school holidays.


I can feel myself becoming increasingly tense as each day goes by. My shoulders are tight and I feel on edge. Nick has been a star, therefore I can't really throw the blame at him per se. It is more the situation I find myself in. It's the fact that I am on duty 24/7, with very little respite. That's not to say I haven't had any *me* time', it's just that it has been sporadic. I miss my free mornings while Nick is at school.

Today, I discovered a way in which to wind down. Nick was in his happy place, so I decided to sit near him and play around with my camera. I am enjoying the challenge of learning how to use manual, and taking on a Project 365 encourages me to practice every day.

There we were, Nick swinging away merrily, chuckling over his iPad. The dogs demanding loves and pats and general doggy stuff. Me, adjusting my camera settings, framing my image and taking my shot.

It was blissful, Slow and relaxing. No thoughts beyond the sights and sounds of my immediate surroundings. 

Hey, Nick. That looks fun
Aww, Harry, you want some loves?
Okay, hmmm, f5.6, maybe 125, check light meter, adjust
Yuk, did you really have to lick my ear?
Keep still, dog
Yoohoo, Nick. Click.
Eish, this grass is itchy. Good grief the lawn needs mowing.
Oooh, I love close ups. Wish I had a macro!
Do you have to sit in front of me when I am lying on the grass. Seriously, dog. you are a pain.
Hey, Nicks. This is fun.

Time slowed down. Nothing else mattered. Happy Nick. Happy dogs. Happy me.

By invitation only!

Chores are an inevitable part of daily life. Admittedly not so much here in South Africa. Due to the vast population and not enough employment opportunities, the majority of households employ a cleaner. It's what you do.

For me, doing chores is a great opportunity to engage with Nick. The trick is ensuring that the chore is more about the interaction between two people rather than the task at hand. How does that look in our house?

Nick is watching something on our very old laptop.
I stand beside him. "Hey Nick, I need some help with the washing". (Invitation)
Nick: Shakes his head for no and makes the sign for "finished".
I sit down on the seat next to him. I don't say anything and I sit there for a few seconds. 
Nick stands up. I stand up. Together, we walk to the laundry.
Me: "Great, you are coming to help me".
My role is to hand him some dirty washing. His role is to put it into the machine.
I stop after three items.
Me:  "Thank you for helping me, Nick. That was easy".
Nick: Waves goodbye and then leaves.


I invite, rather than dictate.
Nick makes his own decision/s.
I deliberately plan to keep the activity short (in this particular instance).
We work *together*.
I give him opportunities to think for himself.
I am mindful of being declarative.
I cut back on the chat!
I spotlight our success.
I respect his decision to leave.