Travel and the Autistic Teen

There is much excitement in our house. We are off to New Zealand next week to spend some quality time with my side of the family. As you can imagine, the trip is a big deal for us because Nick is also coming along. Fingers and toes crossed that the flights (three of them to NZ) go smoothly without any stress. The different time zone is going to be a challenge but let's not think about that just yet!

Nick's most favorite sign of the moment is 'plane'. If I pretend that I don't know what he is signing, he will write it on my phone or his iPad.

Now, I am not a Social Stories kind of gal. I prefer to expose Nick to different experiences, slowly and mindfully. Each adventure we have, whether it be a trip to the dentist or some form of travel, I am very mindful of how much 'challenge' Nick can cope with (edge +1). I know when Nick hits his tipping point, how much further to encouragement him and what accommodations will help him.

For sure, I do prep him a little bit about future events. However, it will be a simple comment made a few days in advance and/or I may use some sort of visual prop. A prop could be something like a basic calendar on the door of my fridge or the suitcase sitting in his bedroom.

Although I don't feel the need to create a story about what is going to happen in the future, I do like to create visual memories of past experiences. Nick can then look at those memories and share his adventures with others and (hopefully) call upon his previous knowledge during a new adventure.

Anyways, a very quick post from me as I have a 101 things to do and am running out of spare time fast..........

Autism is.....

At a recent workshop I was given a piece of paper and asked to complete the following sentence;

'Autism is...............'

My first thought was to write down, 'Autism is a neurological condition and is characterised by the following......'

How dull. I scrapped that idea.

I decided to let my mind relax and wait for the words to appear. Interestingly each word that popped into my brain was positive, although 'challenging' did make an appearance.  I found the experience to be beneficial so thought it a great idea to have another go. For this particular exercise I chose to use each letter of the alphabet (me and my lists!). I wrote down the first word(s) that came to mind and then added my thoughts that came from that word.

Alarming:  The thought of what is going to happen to Nick after my death. My only worry.

Bloody hell:  What have I let myself in for. Tongue in cheek!
Cheerful:  Sometimes that cheerful smiley face of mine is fake!

Development:  I feel that Nick's development is an ongoing process and one that I wish to nurture.

Exhilarating:  I am so excited about the possibility of taking Nick on future travels.

Frustrating:  To be honest, this word rarely appears in my vocabulary.

Good grief:  Not sure where this came from. Perhaps a sign of exasperation!

Health:   I am very conscious of staying fit and healthy because I have to live forever.

iPad:  I am aware that Nick has too much screen time. End of story.

Joy:  I cannot lie, it has not been an easy journey, yet this boy makes my heart sing.

Kiss:  My boy may not show love in the conventional way, yet his regular requests for family hugs are the bomb.

Love:  He is my kid and that's that.

Mindful:  RDI has shaped the way I parent and has increased my awareness of being mindful.

Nicky:  Has the most awesome big brother.

Open:  I am open to sharing our life in order to help others.

Parenting:  This journey is going to be a long one, therefore be that 'glass half full' person.

Quiet:  Nick is a gentle soul and a bit of a couch potato, like the rest of his family! :-)

Restful:  Life for us is calmer, more peaceful.

Special needs:  All I can say is, thank goodness for my friends who walk a similar path.

Time:  Time heals angst.

Uncertainty:  We don't know what the future holds, although we plan to live, love and laugh.

Victorious:  Perhaps not the correct word, however, am happy dancing over every achievement

Welcome:  My home and school have an open door policy. Feel free to visit.

x:  No word comes to mind!

Yes:  I find it hard to say no.....

Zigzag:  We don't ride a rollercoaster, there are no highs and lows. It's all about changing direction and moving forward.

If you were to do a list, what would it look like?

The Cook's Assistant

Nick is going through a stubborn teenager phrase. He only wants to do what he wants to do. When invited to join me in some form of interaction, he makes the sign for 'finished' quicker than you can say, "let's....."

Thankfully, I am a veteran RDI parent and know how to get around his resistance without making him feel pressurised to perform.

The easiest way to explain how I parent Nick is to look at how I approached our latest cooking experience.

1.  I plan what needs to be done for the activity.

     *  Collect the ingredients and utensils
     *  Preparation of ingredients
     *  Cooking

2.  I decide on our roles.
     *  I talk about the items I need for the recipe. Nick collects the items.
     *  I prepare the ingredients. Nick places the ingredients into the saucepan.

3.  I plan opportunities for Nick that encourage him to think for himself.

      *  I choose a saucepan that is in a very low cupboard and under another saucepan.
      *  I leave the mince in the fridge and he has to figure out how to find it.
      *  I open the stock cube wrapping just a tiny bit and Nick has to remove the cube.
      *  I don't open the tins of tomatoes. Nick needs to figure out the next step.

4.  My methods for engagement

      *  I do the majority of the cooking and invite Nick to assist me.
      *  I don't rush through the activity and am mindful about how I approach Nick.
      *  If Nick refuses to join me, I wait patiently without saying a word. #workseverytime
      *  I do not tell Nick what do to.
      *  I use declarative comments to encourage independent thinking.
      *  I am mindful and give Nick plenty of time to think and respond.
      *  I talk aloud, thus letting Nick know about the process and what is happening next.
      *  I keep Nick's role manageable yet with a little challenge. Edge+1
      *  I pause what I am doing and wait to see if Nick jumps into help me.
      *  At times I am non verbal and I wait for Nick to reference me for information.
      *  I spotlight moments of success.

5.  My thoughts

      *  I don't expect Nick to stay with me for the duration of the cooking.
      *  A minute here, five minutes there... they all add up.
      *  I am very aware that the activity is about our interaction with each other.
      *  I endeavour to not let the activity become all about the task at hand.
      *  I don't beat myself up if the activity doesn't pan out how I want it to.
      *  It is always helpful to plan what I would like to achieve.
      *  My mindset is such that I can be spontaneous with Nick and instinctively make a plan.

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 Spot of Guiding

Feeling incompetent is a horrible sensation. The heart pounds, the mind goes into overdrive and the body immediately hits fight or flight mode. Being challenged beyond the safe zone that I know is scary, however, having personal experience gives me some clues as to how my son feels when faced with the unknown.

Understanding that new experiences can be stressful helps me to be mindful about my approach with Nick (and myself). Using co-regulatory activities and the edge +1 concept, I assess Nick's level of competence and plan my next step to ensure that he is continuing to learn, yet scaffolding the activity in such a way that I don't overload him.

There are many ways to help guide him to make sure that he has opportunities to think for himself and make his own plans. I use non verbal gestures, declarative comments, noises, facial expressions, self-talk, modeling and spotlighting. The power of the pause also works a treat.

The following video clip is of our latest RDI planned engagement and is a good example of how I guide Nick. As you will see, Nick is not that keen on helping (that feeling of incompetence?), however, he stays with me! I carry on with what I am doing and invite him to join in. I immediately pick up on his sensory and motor planning problems and scaffold our engagement to make it easier for him. As soon as he starts showing signs of feeling competent with his role, I add in a little variation, making sure that I let him know what I am doing. I keep the new pattern relatively simple to ensure that we end on success.

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! 

Up Close and Personal

I am doing a short photography course. It is very interesting and a real challenge. 
We are learning about Lightroom (online photography editing program) and lots of other fascinating stuff. Sadly, I broke my camera lens while doing one of the homework assignments.... but hey, such is life. Gulp.

Our lecturer has asked us to choose a personal project for the duration of the course. After much thought, I eventually decided to focus on Nick. He is extremely difficult to capture, therefore this project will give me the opportunity to really practice using my camera, working with light etc etc. Way harder than taking photographs of flowers! 

Let's hope he enjoys his 'male model' role as much as I enjoy my role as photographer!

Orange and Green Stuff

Oh my word, I am sick of eating Butternut soup, Butternut and Ginger soup and Curried Butternut soup! I can't for the life of me understand why Nick likes to eat Spaghetti Bolognese three or four times a week. Yuk.

But, hey, it's fabulous that Nick likes the soup. Woohoo, a new food.

I threw him a curveball today by planning a little family lunch, outside on our veranda. Me, the husband and Nick. No iPad, no music, no story CD's. No fruit and veg juice, no yoghurt and no toast with jam. Wow, lots of changes for my boy. We had soup!

Anyway, while we are on a roll, I decided to try something new. Edge +1 and all that. I found some baby marrow spaghetti at our local smart shop that looked pretty good, and I figured that it would blend in well with pasta. When Nick's supper had been cooked, I called him over to watch me serve it up. First the pasta spaghetti, then a small amount of baby marrow spaghetti. I added the mince on top and then chopped it all up.

Nick sat at the table, bowl in front of him, fork hovering over the food. He eventually ate around one third of the food and then started to sign for 'finished'. He ate a tiny bit more while I continued to send him reassuring smiles of encouragement. Eventually I could see that he was struggling a bit and after some thought I decided to remove some of the green bits of baby marrow. Voila, that seemed to do the trick. I guess that after years of eating Spag Bol, having some green in there was totally wrong! Generally, Nick polishes off a large bowl of his favorite meal, however, this time he only ate around two thirds. Needless to say I was really pleased with his effort and the fact that it was a relatively stress free experience.

Slowly but surely we both continue to make progress on this food journey of ours. Adding new foods to a very restricted diet is possible. The proof is in the pudding vegetables!

Family Time

We have had a proactive day that involved a few changes to our regular family routine. In fact, I threw Nick a huge curveball by postponing shower time until late morning! Wearing pajamas at breakfast time is not usual in this house! He helped me unstack the dishwasher, mix up a big batch of cereal, measure out some ingredients for Play Dough and assist with washing some dishes. 

In my quest to expand on Nick's limited diet, I decided to make Butternut soup for lunch. Unfortunately, I was missing two major ingredients, so decided to change the flavour by adding some curry powder. Nick is not used to strong tasting food so I only added a teaspoon! His lunch is pretty much the same each day, therefore it was a new challenge for him to have the soup, especially one that was a tiny bit spicy! Woohoo, he ate it. #happymum

Nick and his Dad went out for a walk to get some exercise in for the day. When they got back, I gave Nick the go ahead to have some iPad time. He had far too much, but hey, his folks needed some space. He also needed some time for himself and I think that it is important to respect that. 

We received an invite from friends to go out for supper to a local Indian restaurant. To be honest, I was a bit concerned about taking Nick, as my Butternut curry soup is far removed from Chicken Tikka Masala! Thankfully, the husband was adamant that we could make a plan and he ordered Nick a takeaway Spaghetti Bolognese from the local Italian restaurant. Everyone was happy and we had a lovely time, thank you very much. 

All in all, Nick was an absolute star. We were able to be spontaneous and go out at the drop of a hat. Our morning was upside down, yet Nick just went with the flow. I let go of the mother guilt and didn't worry about the extra time he spent on his iPad. 

It's been a wonderful public holiday for us today. Happy Women's Day, South Africa. 

Keeping it simple

Thinking up planned engagements doesn't have to be hard work. It is also not necessary to spend a lot of time on each engagement/activity. I find with Nick that if I spend too long on any one thing, the actual activity starts feeling like a chore. I don't want Nick to feel.....'groan, here we go again!' I prefer giving myself some sort of limit to guide me when to stop the activity, ensuring that I keep it short. Over time I have found that this approach keeps Nick interested and he is never resistant about joining me.

As always, when planning an engagement I take into account what Nick feels comfortable doing and ensure that I add in a little challenge. I decide on my objective/goals for the activity, what limits I am going to set and the style of language I want to use. It is so helpful to have a plan in place and it's not difficult to jot down your thoughts. I find that a written framework for an activity helps to keep me on track. I can also reflect on our experience and write down my thoughts on my approach for next time. Simple, yet effective.

Two easy planned engagements this afternoon. 

1:  I invited Nick to help me find the ingredients for Bolognese sauce. My role was to let him know what I needed. His role was to find each item. Nick is familiar with this type of scenario, however, this time I introduced items that he was unsure of. He did require extra scaffolding and I used eye gaze and declarative comments to assist him. My self imposed limit for this activity was seven items. Once they had been found, the activity ended.

2:  I asked Nick to turn off his iPad and invited him to help me wash the dishes. He responded immediately and came to check out what I was doing. I had set aside eight items. My role was to wash an item and pass it to Nick. His role was to rinse the item and place on the drying rack. Nick was unaware of what was expected, so I modelled the sequence for him before inviting him to take a turn. He picked up on the pattern quickly, although at times missed out on rinsing. I made little noises or declarative comments to remind him to rinse. 

We all have household chores to do and they offer up many opportunities for planned engagements. If you are a regular reader, you will know that we cook a lot of Bolognese sauce! No matter how many times I cook it, there is always a different way to introduce a new challenge to Nick...... and that includes cleaning up the mess! :)

Happy cooking!

Dealing with change

Many moons ago, before I started with an RDI consultant, I devoured any RDI information that I could get my hands on. Back then, our only way to access the internet was with dialup. This was a laborious process and all very hit and miss (no facebook back then!). Thankfully I was directed to a proactive Yahoo group called RDI Mid Atlantic and it was a mine of information, hence most of our knowledge came from this site. *The site has since disbanded.

RDI has evolved and grown since that time, however, I picked up a few goodies that are still used to this day. The concepts are simple, yet hard to put into practice. I can vouch for this!

One of the most life changing concepts for us has been 'same but different'. If you have been following this blog for a long time, you will be aware that Nick was an extremely rigid child. Everything had to be the same and woe betide anyone who added a little variation to his static routine.

With the words 'same but different' in mind, we began to add teeny tiny variations to rigid patterns. For example; when at Speech Therapy, Nick would not tolerate anything on the table and with the sweep of his hand everything would go crashing to the floor! The Speech Therapist started out by placing a pen on the far corner of the table, reassuring Nick that it was fine to stay there. The table was as Nick liked it, yet it was a little bit different! After a few seconds the therapist removed the pen. Thereafter, each session Nick attended, the pen was put onto the table for longer periods. So on and so forth....

This was the start of helping Nick to understand that 'change' was okay. Variations to routine and order are scary to a child who needs the security of sameness, however, using the 'same but different' approach in everyday life successfully enabled Nick to become the young man that he is now.

Today is a prime example of how 'same but different' has helped him. I made arrangements for Nick to be taken home after school. I did this for a couple of reasons. (a) I was going out for lunch. (b) I want him to experience changes in his routine.

Unfortunately, it was raining heavily when it was time for Nick to go home. Bronny (who was taking him home) parked her car close to the school veranda in order to keep Nick as dry as possible. Due to the rain and some recent plumbing work, her car got stuck. Luckily she was able to get a friend to come and tow her car out of the mud! If this had of happened a few years back Nick would have become extremely stressed and unhappy. Today, he enjoyed the novelty of the experience and was keen to share his thoughts. "Nick loved being pulled out with the rope and was laughing and pointing at the rope saying oh no oh no."

Pretty huge, don't you think?

I Feel Fantastic!

There is this guy who I see at least twice a week at the gym I frequent. He must be ten fifteen years younger than me and has two wee kiddies. No matter how often I ask after his family and general wellbeing, his response is always extremely positive and upbeat. After a few months of this, I decided to enquire about his lightness of mood..... I mean really, two tots, sleepless nights, blah, blah, blah!

It turns out that his philosophy is positive affirmation. He wakes up in the morning, tells himself that he feels great and that it's going to be a fantastic day. In all his dealings with people (and there are many) he reacts with positivity and calmness. A wise man indeed.

Although I am not as optimistic as my gym buddy, I really like his attitude. In fact I have been mulling over his words for days as they really made an impact on me.

Hence I have a new mantra........

My name is Di. I am feeling fit, healthy and happy. It's going to be a fantastic day.

When life gives you lemons, take out the camera!

Just an Ordinary Day

It's 6:30pm and Nick is tucked up in our bed watching TV. I can hear him laughing over the antics of some silly cartoon, probably Mr Bean!

We have had a busy day and Nick has been thrown many curveballs, all of which he has handled with ease.

1.  Nick went for a ride to the airport to drop off his brother. Before breakfast. Gasp.

2.  We decided to go to the movies and watch Finding Dory. Gotta love Disney Pixar. Nick was a star.

3.  Left movie complex and drove to lovely coffee spot. Chocka block full. Back into the car we go.

4.  After much waiting in traffic, we finally arrive at another fav coffee spot. It's close to lunch time and we are starving. Hmm, a bit worried about food for Nick. Throw caution to the wind and order him spaghetti and meatballs. He ate 1/3 of it which was pretty good going as the meatballs were spicy! Yay, new food. #samebutdifferent

5.  Popped into the supermarket on the way home. Shopping is never an issue for Nick and he is happy to play different roles throughout the whole process.

6.  Chill time at home. I made some Butternut and Ginger soup and pottered around with my camera. #metime

7.  I took the dogs for a late afternoon walk at the local park. The husband and Nick went for a 1km walk at the beachfront.

8.  I decided to offer Nick a little bit of soup for supper, followed by Macaroni Cheese.  I only have one rule when it comes to new food. Nick must try it..... one taste is sufficient, although I do encourage two tastes. Well, he ate the lot! Yay, new food. #firstandthen

I don't know about you but I am pretty chuffed with the above list. I love the fact that ordinary days are now possible.

Thank you for taking the time to read my post. Have a fabulous week.

Proactive Pausing

I am all about exposing Nick to different experiences, yet am extremely mindful of my approach. I want to build onto his feelings of competence and thus encourage him to be open to new challenges.

It doesn't matter to me if our interactions only last for a couple of minutes (or even a few seconds). All those tiny increments of time add up and are extremely beneficial.

I find 'pausing' to be a very powerful tool. The space allows Nick the time to process information and respond should he wish to. Here are few examples from yesterday interactions;

* Walking into the grocery store and standing by the trolley bay. I paused and waited. After a few seconds Nick collected a trolley and began to push it.

* Standing by the fruit and making declarative comments. 'We need a pineapple'.  'I wonder what apples Nick would like, hmmmm, red, yellow or green?'.  After each comment I paused and waited. Nick thought about the comment and responded. At times he needed some extra scaffolding, however, he found the items needed.

* Leaving the mall, Nick pushing the trolley. I hold up the parking ticket and wave it around. Nick notices and immediately changes direction and we go to the information counter so that we can get the ticket validated.

* In the car park, I place the parking ticket into the machine. When the ticket pops out, I pause and wait. Within seconds Nick collects the ticket and gives it to me.

* I pretend that I can't open the car boot. I pause and wait. Nick has seen me struggling and he uses that pause to come to my aid.

* When we arrive home, I make a declarative comment about taking the groceries inside. Nick gets out of the car and goes to the car boot. I pause. He opens the boot.

* Nick is sitting on the couch with his iPad. I sit down next to him and make the comment, 'I am making cookies and need to get the ingredients out of the cupboard'. As I walk towards the cupboard, Nick gets up and comes to assist. We seamlessly start up a little pattern of passing items to be put on the countertop.

* Nick has disappeared into another room.  I have started measuring out the ingredients for the cookies. I call out, 'I need some help measuring the flour'. I carry on with what I am doing and after a minute or so, Nick comes to join me.

We have many daily moments like the above, where I deliberately pause in order to invite Nick to play a role. For sure, it would be easier to give him instructions, however, I want him to 'think, process and respond'. My wish is for him to partner with me because he wants do, not because he has been told to.


"Today, I am talking about the importance of partnering with your child. For some parents, it may come naturally, for others, it may feel challenging at first. I encourage you to partner with your child at least 10 times per day, everyday. It will get easier and you can start out small and always build on your successes in length of time you are partnering or ways in which you partner."   Barbara Avilia

10 a day!

I am making a conscious effort to partner with Nick at least 10 times a day. If you are wondering what I am talking about, check out this article written by Barbara Avilia.

Grocery shopping ~ So many opportunities for engagement. This is an easy one for us so I am going to count all of our partnering interactions as 'one' experience. I did throw Nick a curve ball by taking him to a different shop to buy our vegetables. #samebutdifferent

Stacking the dishwasher ~ My role was to hand Nick an item. His role was to place each item into the dishwasher. The challenge for him was to figure out where to put the items and how to place them. I didn't want this experience to turn into a 'just a chore', therefore invited him to assist me a few times throughout the day. I kept each interaction short and we stacked no more than 6 items each time.

Cooking ~ I was busy in the kitchen this afternoon, so made sure to invite Nick to help me out here and there. A bit of pouring. Some transferring of ingredients from roasting dish to bowl. Stirring the food that was cooking on the stove. He found this quite challenging so I was very mindful of his edge+1.

We spent some time reading a book and then moved onto putting together a large floor jigsaw puzzle. I stopped our puzzle construction half way through as I don't want Nick to think he always has to complete an activity. We went back to it an hour later.

I have been trying out some hand exercises with Nick and I spent five minutes practicing a couple of the moves. He really struggles with the motor planning so we are taking it really slow. Again, I continue to be mindful of edge+1.

Photography is my oxygen mask, so I am always looking for opportunities to practice with my camera. This time I couldn't resist pulling in Nick to help me out! I thought it would be a fab idea to take a photograph of my freshly made soup and add some winter leaves for interest. Nick wasn't too keen to go outside, however, with a bit of encouragement he came to help me scoop up a few leaves before scurrying back inside! Any engagement is better than no engagement!

Anyone for Butternut and Ginger soup? :)