Thursday, December 1, 2016

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..........

Sunday, October 23, 2016

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?

Monday, October 17, 2016

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.

Friday, October 7, 2016

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.

Sunday, September 25, 2016

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.

Wednesday, August 31, 2016

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!