April ~ Day Twenty Eight

We do like our slow days.

In fact, taking our time and going with the flow is more meaningful than rushing hither and thither! We get to experience the little moments and share them with each other.

I enjoyed reading this short article written by Lisa Palasti. Slow Down in Autism Treatment

April ~ Day Twenty Six

RDI is bigger than what I share. I write about the journey with my son, who just happens to be on the more severe end of the spectrum. My stories are a simple description of what helps us to continually make progress. Your child may be more advanced or perhaps not yet at Nick's stage of development. It doesn't matter. The RDI program addresses where your child is at. Maybe my blog posts do not fit your situation. That also doesn't matter. We each have our own personal stories.

This journey also includes me. I share my role as Nick's mother and how RDI has helped me to become a better parent to him. I have no problem in admitting that I needed help on how to guide him effectively. I thank RDI every day for giving me the tools to insure a better quality of life for both us.

Thank YOU for reading my posts. I hope that my words help you in some way.

April ~ Day Twenty One

It's Friday. You know what that means, right?

Friday is a day to chill. It's a day to do whatever we feel like!

Today, I made arrangements for Nick for be looked after.... so that I could go out for lunch with some friends. I also treated myself to some tulips. Nick was happy. I was happy. Win win.

It is always possible to make a plan, if you really want to!

April ~ Day Six

Nick has trouble with wrist rotation, therefore it's difficult for him to manipulate cutlery. Preparing food is a good time to practice using various kitchen implements/cutlery.


My objective:

I really want to work on pacing and observe Nick to see if he can regulate his movements with mine.


Activity:    

Cutting a banana.


Our roles:

For this activity, I decided that we would use one banana (cut in half) and two knives. We would work together and cut our own section of the banana simultaneously.


Limits:

Half a banana each. No music. No dogs in the kitchen.


Communication:

Explain the activity and define our roles.
Use chanting to scaffold the cutting. "Cut, cut, cut, cut".
Stop the action and pause. This gives Nick time to regroup and think for himself.
Make little noises if needed. Nick is aware that a small noise means something, therefore checks out me and my body language for further information.


What happened:

As expected, Nick battled to hold the knife correctly and needed assistance with the correct grip. He quickly picked up on our simultaneous pattern, although raced ahead at times. In order to slow him down, I deliberately paused and waited for him to get back in sync with me. He was very aware of coordinating his movements with mine and tried hard to concentrate on the pacing of the activity. The power of the pause is amazing. Try it!


What next:

Use another banana and bring in an apple. I want Nick to *feel* the difference between cutting a soft fruit and a hard fruit.

50 Random thoughts from a SN mother

1.    So what if he loves watching Mr Bean. Every day.

2.    I will be singing 'The Wheels on the Bus' forever. 

3.    I must get off my butt and introduce some new food.

4.    Smile and wave, people. Smile and wave!

5.    It is okay to have down days.

6.    Chocolate helps.

7.    Friends who walk a similar path also help.

8.    Life is an adventure. 

9.    Seriously, do not take life too seriously. 

10.  Toileting. Shit happens!

11.   Puberty. Just go with it.

12.   Where there is a will, there is a way.

13.   It is always possible to make a plan. 

14.   Missed milestones are really hard.

15.   His laughter is the best sound in the world.

16.   Damn, that kid is hairy.

17.  Why does he always post my book under my bed?

18.  Seriously kid, the teaspoon does not go into the rubbish bin!

19.  Sigh, the rubbish does not go in the sink.

20.  Life is random.

21.  Suck it up.

22.  He said 'oh shit'. Woohoo, he said 'oh shit'.

23.  "Nick, don't point at people, it's rude." Oh, the irony.

24.  It's great that he loves to point out things of interest. A wee bit tricky while I am driving.

25.  Why is it that I get called to the bathroom the second I sit down to eat my lunch?

26.  I love this child so much it hurts.

27.  Do all autistic kids ask the same questions again and again and again?

28.  I am patient, I am patient, I am patient.

29.  Joint attention with this kid is the bomb.

30.  Eish, I can be so static at times!

31.  He has way too much iPad. #badmum #timeout

32.  It's okay to acknowledge chronic sorrow.

33.  Parties are hard.

34.  Comparing Nick to his peers really really sucks.

35.  Damn, he should be in his last year of school next year. #sadmum

36.  Moving right along....

37.  Hey, at least I still get to see Pixar movies!

38.  I love that we can take Nick anywhere.

39.  Life is much easier now that we can be spontaneous.

40.  I need to ramp up Nick's non-existent exercise routine.

41.  Hang on a sec..... the husband needs to ramp up Nick's non-existent exercise routine!

42.  I now wake up as early as Nick!

43.  He brings me grief, yet also brings so much joy.

44.  Some days I want to run away.

45.  When I am away from him, I want to be by his side.

46.  He was certainly born into the right family. #lovestraveling

47.  When the going gets tough, the tough go shopping.

48.  Embracing our slow way of life.

49. Don't worry, be happy.

50.  My heart is full.

A Dose of Reality

Life in the land of special needs. On duty 24/7. Feeding, toileting, bathing, shaving, entertaining, guiding, nurturing. Guilt that I am not doing enough. Irritability that there is not a moment of peace. Cross that I have to do this for the rest of my life. Love is: when he requests a family hug. Joy over every little bit of progress. Amusement when he happy dances to pop music. Delight because he can say 'oh shit'. Thick skin from dealing with stares and rude people. Sadness.... comes with the territory. The awareness that 'small stuff' is not important. Understanding that it is always possible to make a plan (if you want to!). Relief that we can leave him with trusted people... and take some time out. Happiness because we can now take him on adventures. Our life is different than most, yet similar to many others who walk the same path. Such is life! 

Happy New Year!

Hello there

Firstly, thanks for stopping by. I really appreciate that you have taken the time look at my blog. If you have been following for a while, you will know that I write about my lovely Nick. He is on the more severe end of the Autism Spectrum. I find it cathartic to write about our experiences ~ blogging is cheap therapy and all that! 

We have been on this a journey for over sixteen years, and in all honesty, it has been quite a bumpy road. Such is life, hey? Anyhow, we have all lived to tell the tale and life is now cruising along quite nicely (80% of the time!).

For the last few weeks I have been having an internal debate on the merits of continuing with this blog. Is it right to continue sharing our story now that Nick is 6 feet tall, hairy and has a gruff voice? Is anyone actually interested in reading about autistic teenagers? Do people feel comfortable reading about an intellectually disabled young man who will never live independently? The list goes on....

The last couple of years have also brought about a change in myself. I am no longer focused 100% on autism and because of that I have some extra free time. That time is being put to good use and I have also taken up photography as a hobby. Having something that is exclusively for me has been a game changer. I find photography extremely challenging, however, it is really exciting to be experimenting with something new. 

Anyhow, I have decided to keep on waffling for an indefinite period, although you may find there are less *autism* posts and more pretty pictures! For the sake of privacy, I will not be sharing any more video footage of Nick. Should you be interested in watching clips of RDI in action, check out Zoe's blog where she engages with an adorable little girl called Lucy. 

Bye for now. x

Contemplating communication....

Last week:

Nick stood beside the locked gate that lead outside to the car park. He looked to me for assistance. "Ah, we need the keys", I said. As he gazed towards the keys on a nearby bench, my friend hurriedly picked them up and passed them to Nick. "It's this key, the yellow one, see here... it's the yellow one". He took hold of the key and tried to insert it into the lock. I waited patiently. I knew that it would be difficult for him, however, I wanted him to persevere and also to ask me for assistance if he needed it. My friend watched this for a few seconds (no more than 10 seconds) before jumping in to help him. As quick as a flash, she put the key in the lock and was saying, "turn the key, turn it towards Mum, turn it this way. Nick fumbled, and again my friend stepped in, she gripped the key and unlocked the gate for him. 

The result? Nick was not given the opportunity to think for himself and make a plan. He was bombarded with a lot of language and too many instructions. It was overwhelming and caused him to become anxious. It was not a positive experience. 

I was just the same before being introduced to RDI.  I thought it was necessary to continually prompt Nick. I figured that the best way he could learn was by rote, consistent repetition and rewards. However, it didn't work that way. The more commands and directions he was given, the more static his thinking became. (To this day, the only way I can get him to close his lips is to say, "do this" and model the instruction by closing my own lips). Each time I gave him an instruction or stepped in to solve a problem I was actually taking away opportunities for him to learn and grow. I wasn't empowering him to use that brain of his!

This morning: 

We are in the kitchen. Nick is putting away his breakfast items and I am unloading the dishwasher. I take out a cup and then pause. I wait for Nick to look towards me. As his eyes meet mine, I hold out the cup... he looks towards the dishwasher and then back to the cup in my hand. He understands that the cup is clean and needs to be put away. As he takes the cup and puts it into the correct cupboard, I get ready to hand him another one. I set up a gentle co-regulatory pattern of giver/putter and Nick follows my lead with ease. 

I remove the glass jug from the dishwasher and hand it to Nick. He hesitates for a moment, not sure where to put it. I pause and give him time to think of a plan. He is still unsure, therefore I shift my eye gaze to the pot cupboard. He immediately follows my gaze, opens the cupboard then drawer and puts the jug away.  

Still working with the giver/putter pattern, I pick up a clean saucepan. I casually comment, "I wonder if Nick can remember where this goes". He takes the saucepan and again he hesitates. Again, I give him plenty of time to think about what to do. I decide to make another declarative comment, "aha, it's your spaghetti saucepan". Nick now knows exactly where it belongs! :)

We continue to unpack and put away until I choose to finish the activity. I let Nick know that we are done by saying, "thanks for your help, I will do the rest". Off he goes...... his demeanor suggests that he feels calm, happy and competent. It was a positive experience.

By making the simplest changes to my style of communication I am now empowering Nick to use that brain of his!

* slow down the pace
* pause
* less imperative language
* no direct prompts
* no commands/instructions
* don't overwhelm with a lot of words
* more declarative language/comments
* use self talk 
* use eye gaze and body language
* keep pausing
* remember ~ the engagement is more important than the activity


Give it a try. The results are addictive! 

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

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!

~*~