Cheerfully thankful!

I have been pondering over what to write for my last blog post of the year. So much has happened this past 12 months. Lot’s of excitement over planes, suitcases and adventures. Lots of brag fest material for both my sons. For those of you who have never read my blog before….. I have a 17 year old who is extremely academic and a wonderful young man. I also have a 13 year old who just happens to be autistic and the sweetest gentlest boy to behold.

My own personal growth has made me a more understanding and patient person. I feel grounded and more positive about the future than ever before. In a few days time I will have been married for 18 years. My marriage has had its ups and downs, although I am fairly sure that this is pretty normal, especially when you throw a special needs child into the mix!

I do try to look on the bright side of life, hence the name of my blog. Mind you, I also try to keep it real and write about anything that may be causing me angst. My blog is my therapy and its loads cheaper than visiting a therapist!!

I follow a lovely blog called 'Mummy from the Heart‘ and each week she has a blog hop where her readers share their *reasons to be cheerful*.  This week the theme is... A simple Christmas. I happened to read her latest post this afternoon and decided that participating in the blog hop would be a great way to end my blogging year.

My following reasons to be cheerful may not be specific to Christmas day, although they do revolve around our holiday season.

1. I have really enjoyed catching up with family and friends who now live overseas. In one week, we have had family from Zimbabwe and lunch with old friends who now live in Sydney, Australia. I was also fortunate to have a couple of visits from a lovely London friend. 

2. I am extremely thankful that our second son (you know, the one with autism) has become so flexible and resilient. Our social calendar has been full and we have been without a sitter. Therefore, we decided to just bite the bullet and take our boy with us. For the first year ever, we have enjoyed outings as a complete family and our boy has handled it exceptionally well. This is a HUGE achievement!

3. At times I can be impetuous and do something crazy that affects the whole family. This time I bought a dog, without putting any thought into how it would change our family life. We then took on another dog (they are brothers!). I am so grateful for our canine friends. They get us out of the house, give us a lot of joy and we receive unconditional love. 

4. I am very grateful that my husband likes to cook. I love that he plots and plans and chops and dices. As I write this, he has put a chicken in the Weber, has potatoes roasting in the oven and is cooking up a carrot and cumin concoction! I should be cleaning up his mess but this blog post is far more important!!

5. Thanks to my husband for parting with some of his precious air miles, I have just booked a flight to Ireland to attend an Autism Conference. The conference is being held in Dublin on the 3rd and 4th of April 2013 and I am beyond excited.

On that note, I wish you all a very Happy New Year! 

See you in 2013! 

A lazy afternoon!

A few words....

In a rush and a flurry

The house fills with friends

Talking and laughing

Kids running amok

Crazy puppies

Loving attention

Ball throwing

Again and again

The clink of ice against glass

A cracker dipped 

Into cream cheese and sweet chilli

Mum busy in the kitchen

Hey, where is my boy?

My teenager

Who is autistic

Has autism

He hid away fast

Too many people

Horrible noise

Can't cope, won't cope

Retreated to quiet space

Computer escape

No noise

No people

Oh my boy

So not fair

Life is harsh 

And unkind

I want you with us

I know you cannot

I want to be with you

Sometimes I cannot

It's a circle of emotion

Do I cut myself off

and give you my all

One hundred percent

Or

Do I let you be

So that I can be free

For just a few hours

Your withdrawal

Saddens me

Fills me with guilt

Can I do more?

I see your progress 

Am part of your progress

Such tiny steps forward

but forward all the same

Our visitors don't see it

The progress made

You are not to be seen

and no one goes to see

Special needs is hard

for you

me

everyone who has

I get tired of the fight

The work

The treadmill

Keep going, keep going

I adore you my boy

But sometimes

I need to escape

Just as you do

I want to be normal

Just a mum

With everyday issues

Not the dread of "what it?"

You are doing so great

But so far behind

A million light years

From the kids today

It is so bloody unfair

And autism is growing

There are more kids like you

More mothers like me

A multitude of issues

Autism and more

A forever concern

For parents alone

I checked on you 

Again and then more

You were happy

But not me

I want you with us

I know you cannot

I want to be with you

Sometimes I cannot

Thinking about thinking!

Its school holiday time and the weeks stretch before us. 

Think....  S.t.r.e.t.c.h.i.n.g   and   G.o.  S.l.o.w.

For sure, the thought of filling the days with meaningful content is a bit daunting to say the least, especially when my child DOES NOT PLAY! However, having the time to just go with the flow and take advantage of moments to make them meaningful is great. Stress free great....

I also like the fact that I can plan some productive engagements with Nick and then have the whole day to play around with my plans.

It takes some time to think about choosing an activity to do with Nick. In reality it is not the activity per se, it is the thinking that is required behind the activity. It is the thinking that takes the time. I am constantly assessing and then reassessing: What is my goal for the engagement? Where is Nick at? Are his motor planning issues going to hamper the engagement? What is his level of competence within the activity? What is the next step that I can take with him? When he is competent with that step, what is the next step? 

I am always thinking about that *edge plus one* concept. This is been a big AHA for me! What is Nick's edge? What is the next step? I am not talking a big step. I am talking a tiny wee step; and when that step has been achieved, then I think about the next tiny wee step. It is a continuous process... but, hey... it works. It has worked for Nick. For the last two years he has moved forward. Mr Joe Blogg on the street may not be able to see the progress but I can, as can all the people who know Nick personally.

I am also thinking about my parenting: How am I going to guide Nick? What type of regulatory pattern should I choose? I need to decide on our roles. What type of language should I use? Should I be completely non verbal? Perhaps I should throw in some declarative comments? Do I need to self talk in order to help scaffold the engagement. How long should I pause in order to give him processing time? How long should I spend on the planned engagement? I need to remind myself that what we are doing together is not about the activity but about the engagement.

Moving right along....

Now that I have my plan in place and I know where Nick is at and what our next step will be. Now that I know how I am going to approach our engagement and how I am going to be an effective guide for my boy. 

NOW I need to think about my thinking! 

Phew, sounds a bit hectic..... right? Thinking about my thinking! I must admit to feeling a little overwhelmed and I have pondered over the reasons for the 'why bother' thinking about my thinking! It all sounds a bit deep and a lot of hard work (which is so not me!). However, in order to help my son, I need to fine tune my thoughts and decisions and also appraise them as I go along!

Anyhow, here is a little example of my appraisal of a situation that I had with Allan and the decisions that I made within the situation.

Allan and I had just walked through the most beautiful park, the weather was cold yet the sky a brilliant blue. We were wrapped up warmly in our winter coats, although I remember my hands feeling so cold and I had them jammed into my coat pockets. We left the park and started walking in the general direction of the local high street... or where we thought the high street might be! We reached the junction of the street and pondered over which way to turn.. to the left or to the right. I looked to the right and didn't see much happened. I looked to the left and there were two people walking towards us, both carrying shopping bags. Aha, I thought... we need to turn left. But, hang on, wait a minute... Allan interrupted my thoughts and said that we need to turn right, as he is fairly sure that is where the high street is! Of course I then offered my opinion of turning left. However, my husband was adamant that we needed to turn right! I appraised the situation and thought to myself.... let it go, let the man think he is right (even though I know that I am!!). I then saw a man walking towards us (from the left!!!), so I quickly reappraised the situation and decided to get another opinion. Sure enough, he confirmed that we should turn left. I, of course couldn't refrain from reminding my husband that he should always listen to his wife!!    

On that note, I am going to end with this blog post. However, I am thinking that I have so much more to write about. My thinking about thinking is only just beginning.......                                                                                                                                                                 

I am over at Hopeful Parents!

My latest blog post is over at Hopeful Parents. I am stressing a bit about the upcoming holiday, although I am thinking of ways to get through the days!!

Just click on the following link: Eeek, it's holiday time!

Making changes!

This post is for a friend of mine who has the dearest little boy who just happens to be autistic AND he hates change of any sort.

I may irritate a few people with this post, especially the people who advocate keeping.... 

Everything. The. Same. 

We know that children and adults on the spectrum don't like change. We know that there is comfort in rigid patterns. We know that in order to prevent meltdowns it is safer to...

Keep. Everything. The. Same.

We know that it is scary to rock the boat and life is calmer if we... 

Keep. Everything. The. Same.

But, guess what? Life is not static. Life is about change. Life is dynamic. Life is about the unexpected.

I don't think we are doing our children any favours if we...

Keep. Everything. The. Same.

Many years back, Nick was the poster boy for extremely rigid patterns and sheer hatred of change. Tables were cleared with the swipe of an arm. Distressed wails were to be heard if I drove a different route. We relied on visual schedules. If there were chores do be done *outside in the big wide world*, then only one chore was possible, but it was to be done quick sticks, otherwise look out! The list of horrors is too endless to repeat. 

My friend, you say that you don't have a strict schedule at home?  Maybe not, however, I would be willing to bet that your boy has many patterns that you may not be aware of. Let's get real here. We all have our own little schedules. Some of us live by our diaries. Many of us stick to the same old routine of doing.... whatever. BUT, but...... we can adapt to any changes that may occur.  It is not a train smash for us if we are diverted from our original plan. Throw autism into the mix and we have an issue on our hands.

Look at your son's daily routine. What happens with dressing? How is he with breakfast? Does he always sit in the same seat when you drive him to school? Do you drive the same route to school? Does he always have the same lunch box, the same food, the same juice bottle, the same juice? Do you have a regular "bye bye, see you later", pattern? Look at what happens on a daily basis and analysis it. Are the patterns that you see, the same patterns more often than not? 

I really believe that our children are capable of being more adaptable/flexible. The way that we helped Nick to become so receptive to change was to introduce changes to his rigid patterns, slowly and gently, bit by tiny bit. We always made sure to have big fat reassuring smiles on our faces and we kept our voices light and calm. We may have been feeling frustrated/angry/sad etc but never, on any occasion, did we let Nick see this. He needed our reassurance when changes were made and he got it regardless of our own mood.

Whenever a change was being made, we were very mindful of taking Nick to the very edge of his competence and a whisper beyond. 

To give you an example; as mentioned previously, if there was *anything* on the table that didn't belong, then Nick would clear the table. He would get extremely distressed and go into that flight or flight mode. Well, every item would be sent flying onto the floor. Thanks to the guidance from Nick's Speech Therapist, we ensured that we kept the items on the table to a minimum and Nick associated them with what was being done. The tiny change that was made was to place a pen on the table. Needless to say, in the beginning, that pen would go flying... however, over time and with reassurance from us, it became okay to leave the pen there. That pen turned into two pens, then three, then a pen and a book..... I am sure that you get the drift!

The lunch box and all of its items remained the same for years. One day I placed Nick's chips/crisps into a packet and spotlighted the change. A week later, I wrapped the chips/crisps in some greaseproof paper and spotlighted the change. Then I changed the lunch box.......

Nick was stuck on a visual schedule at school and became extremely anxious if we didn't do what was meant to be done. Take away the schedule and he still recalled what was happening *next*. The pattern created was so rigid and so distressing for Nick if not carried out. We started changing this pattern by moving his chair to a slightly different position. If his chair was behind the table, we would place it to the right of the table... and so on and so forth. Eventually we started moving the table to different parts of the room. We then started added tiny variations to the schedule....

Our mantra was *same but different*. This concept comes from Dr Gutstein (RDI). I am not sure if it is still used today, although I think it should be, as it is a goodie! For us, *same but different* meant that we were keeping something the same but adding a small variation... and then another little variation... and then another.

We don't use visual schedules or write up social stories. Transitioning is a non issue. A great example of how flexible Nick has become is an outing that went pear shaped last week.

Our school trip had been planned. The gang were going to the beach front for a walk along the promenade and then they were going to have a picnic on a nice spot of grass overlooking the beach. There were also plans to go and dip a toe in the sea!  Well, the morning started off badly with a bit of rain and loads of ominous looking clouds overhead! Sigh, it looked like the outing was a no no. However, due to some quick thinking (and the discovery of a new playground the previous day) the gang decided to risk the rain and go on the outing BUT change the venue from the beach to the playground. 

The outing was a success (and the rain held off). Nick didn't have a problem with the new plan. He wasn't fazed in the least that he was going somewhere NEW. Good grief, the kid even sat on the roundabout.... a totally new experience.

Dear friend, just do it, try adding tiny variations. You have nothing to lose! Thank you in advance for allowing me to be so bossy!! xx

P.S: I am very aware that I need to do something about Nick's rigid food patterns!!!! ;)

RDI ~ then and now (part two)

Yesterday, while driving home from our weekly speech session, I just happened to glance over at my boy. He was sitting there quietly, listening to music and watching the world go by. For some unknown reason I felt a little heartsore and this thought came to mind.... "The biggest worry I have in my life is - what happens to Nick when I die?" Is that a BIGGIE or what?

Oh boy!

I do know that our family life has changed for the better. We are more accepting of our situation and we tend to have a positive outlook. In fact, life is pretty amazing, regardless of the fact that we have a severely autistic teenager. 

And this young man of ours just continues to progress. Isn't that great? He is 13 and still continues to make progress. 

My latest facebook status:  "A little update on Nick's vocab.... He is trying so hard to verbalise what is going on around him. He sounds out the letters of familiar short words and he has progressed from saying individual letters (i.e.) c.a.r. to blending the sounds.... c.ar. Exciting stuff." 

Over the years I have watched Nick progress; and then plateau for a long period of time. We have had times where he has been unhappy or highly anxious or switched off. This was a fairly consistent pattern until I began to really focus on RDI, roughly two years ago. I can now say without a doubt, that for the last two years, Nick has continued to move steadily forward, step by step.

Our RDI journey continues to be a learning experience for the both of us. A big part of Nick's improvement is the fact that I have been learning how to guide him effectively. I know that it seems kind of crazy... being guided on how to parent! However, it really is beneficial and I definitely need help with the fine tuning! 

I want to share two video clips. The first clip (two minutes) is from around early 2011 and the second clip (four minutes) was taken in October 2012. In order to keep this post short and sweet, I am going to let you, the reader......

Spot the difference!

Early 2011

October 2012

So, what do you think?

That biggie still weighs on my mind, however, (yes, I know this is very corny and I am sure the line comes from a movie!) we are working towards a better future....

~ * ~

I am over at Hopeful Parents...

Please follow the link if you would like to read my latest blog post for Hopeful Parents! 
Thank you. x

Hope through the years....

Cheerfully hopping along....

Let's face it, even though my life is pretty good... every now and then I feel a little bit sad. That's real life, right? 

Anyhow, I took some time this evening to catch up on some of the blogs that I follow. With perfect timing I happened upon one that is written by a friend, Looking for Blue Sky. Her latest post is part of a blog hop. Huh, you may ask.... what is a blog hop? To be honest, I am a bit of a novice at this, therefore I am just going to follow my friend and hope for the best! 

Thanks go to 'Looking for Blue Sky' for putting a smile on my face and for encouraging me to focus on...............

THREE REASONS TO BE CHEERFUL!

#1  A large part of my life involves caring for my child/teenager who has special needs. Because of Nick, I have a wide circle of friends who walk the same path as me. We are there for each other and *get* the highs, lows and in-betweens that we experience with our children. Today, two friends brightened my day. We (as in.. me, the hub's and our two boys) spent the morning with one of them and her family, chatting over cappuccinos and home-made Banana Bread. The other friend dropped in unexpectedly to say "hi" and to bring a gift of the most luscious looking chocolate and caramel muffins. (My thighs are not happy!).

#2  I am so thankful for my friends who don't live with the issues that I experience on a daily basis. They may not realise what my day to day life is like, however, they are always thoughtful, kind and very supportive. They pull me (figuratively speaking) back out into the regular world and remind me that life doesn't have to be all about special needs. I feel extremely cheered after attending such a fun party last night. Tired but happy!

#3  My third reason puts a big smile on my face. It is Monday tomorrow.... and do you know what that means? The kids go to SCHOOL and I get to have four glorious hours all to myself, to do what I want to do without being harassed by my children! (Bad mum!!).

Have a great week! 

---

RDI ~ framework orange!

My hub's loves his daily glass of freshly squeezed orange juice. Nick also used to drink it, although for some strange reason, now refuses to have even a tiny sip! Bit of a shame really, considering that Nick has had a bad head cold this week and he would have benefited from the extra vitamin C. Anyhow, such is life!

We have been a bit slack this week. Let's face it, who wants to put in the extra effort of *doing stuff* when feeling awful! It is now the weekend and we are nearly ready to get back on track with our latest RDI assignment. For the next couple of days I just want to spend time easing Nick back into some nice co-regulatory activities and throw him a little curve ball here and there for that extra challenge.

Reminder: Two years ago he would refuse to interact with me in any way at all, unless it was to do something that he wanted me to do!

Back to the oranges!

I have had a small bag of oranges sitting on the kitchen counter for the last few days. Bit of an experiment really..... as in, who would put them away!! In the end I could take it no more and decided to take advantage of the opportunity and write up a framework plan using the oranges as an activity for a planned engagement.

As in all interactions with Nick, I ensure that we both have a role to play. There are a variety of role actions to choose from and I decided on a contingency pattern ~ this is where I take a turn and then Nick takes a different turn. Therefore, for this particular framework, I would take an orange out of the bag and then hand it to Nick. He would then put the orange into the fridge.

My goal was to add some variations to this established co-regulatory pattern. Firstly, I would pass him a few oranges, one by one. Then I would throw him a few oranges, one by one (throw the oranges towards him and then add variations by throwing up, right and left). I also planned to give him the empty bag and observe to see what he would do with it. The challenge for Nick was to adjust to the changes in variation. 

Reminder: Two years ago, it was extremely difficult for Nick to participate in any set up activity that also involved me. He would get very stressed if he felt that any demand was being placed on him. (Note: when we first started with planned engagements, each activity lasted for only a few seconds). Nowadays, time is not such a big issue, although I am very aware of how far I can challenge him, taking into account the *edge plus one* concept.

Another important factor to consider is making sure that there are no distractions. This means turning off all electronics and/or removing interests that do not involve other people. In this case, it means turning off the stereo, sending the dogs outside and asking Thomas to give us some space.

When writing up the framework, I also put thought into establishing some activity limits. When would I end the engagement? If Nick became stressed, what would I do? Should he indicate that he had had enough, how would I react? Would I just push him that one little extra step so that the activity was finished on my terms, not his? In this case I felt confident that Nick would cope with the activity, even with the extra challenges. Therefore, I decided to end the activity after the bag had been disposed of. I also decided that should Nick show signs of going beyond his level of competence, I would smile my way through any protesting and move on for a couple more *seconds* and then end the activity.

In all of my interactions with Nick, I am mindful about my communication methods and giving him the opportunity to think for himself. When writing up a framework I always establish what style of language I want to use. Do I want it to be a non verbal activity where Nick will need to read my facial expression and body language for information? What declarative phrases can I use to suggest to Nick what may happen/what can be done? What can I say to spotlight a successful moment? With any style of communication that I use, the emphasis is on guiding Nick to hear and/or see what is happening, process the information and then make his own decisions.

One of the most important points that I need to remember, is that the activity is only a prop. My ultimate goal is engagement with my son. The framework is all about what I need to do in order to guide Nick. If it doesn't work out as planned, then I will reflect on what we have done, learn from the experience and then write up a new plan. If all goes well, then I will think about our next step. It's a great habit to get into: Take Nick to his edge of competence and then one more step. And then again... always moving forward.

In order to remain focused it is helpful to choose a mantra for each framework. My mantra for this particular framework is;  Remember to pause, remember to pause.....

RDI ~ Practicing my parenting!

I have been having an internal debate with myself, as well as tossing a few words backwards and forwards with our consultant.....

I realise that the way in which I guide my child is paramount to the success of RDI. In order for me to be effective, I need to know why I am learning to guide Nick, how I am going to guide him and what I plan to do with him in order to practice what I have learned. I also need to be comfortable with self evaluation and use each experience to reassess and plan for the next step. 

Now, I am a bit of a *go with the flow* kind of chick and I also like to take advantage of unplanned moments. Therefore, I feel that living an RDI lifestyle is important and that spontaneous interaction is a good thing! However, the powers that be, feel that *planned engagements* are far more important in order to learn, grow and move forward. For sure, I agree..... but what about all those opportunities that can be taken advantage of even though they haven't been planned down to the last spotlight? 

Funnily enough, an incident happened this week to highlight to me that actually, in reality, *planned engagements* are HUGE! The following are my reflections on a *planned engagement* that didn't go according to plan. I made a fundamental mistake and had to fly by the seat of my pants! 

~~~~~~~~~~~~~~~~~~~~~~~~~

The challenge for my planned engagement was to offer Nick the choice of two activities and make note of the fact... did he choose the more challenging activity rather than the activity he was more comfortable with. This also ties in with our latest objective, where I am spotlighting to Nick that what we are doing is easy or hard.

I have to be honest and say that the activities didn't really go as planned, however, I thought it would be a good opportunity to post the video footage and reflect on our interaction. I offered Nick the choice of stacking the dishwasher or cleaning a window. I was so sure that Nick would choose *cleaning a window* ...that I didn't write up a planned engagement for *dishwasher*!!! (big mistake!).  When he chose the dishwasher, I had to quickly rethink of a familiar pattern that we had used in the past. This is where the supposedly planned engagement turned into an unplanned interaction. Due to the fact that I hadn't written up a framework, I didn't have a goal in mind, so I just had to wing it as I went along. However, what I do like about our interaction is that Nick is *with me* and in the mode. 

• What did you observe in terms of the challenge? Nick was very quick to choose an activity before I had given him the options. The video footage doesn't show it but I ignored his first attempt and then made a comment about the different activities. I was kind of hoping that he would change his mind and choose the activity that I had written a framework for. I really thought he would have chosen to clean the windows first, due to the fact that we had done the same activity yesterday and that he had found it easy. I am assuming that he chose the dishwasher because it was very familiar to him and he felt comfortable with it. Therefore, he actually did not choose the more challenging activity! *Note to self ~ never assume!!

• Did anything surprise you? Yes, as mentioned above... he didn't choose the activity that I thought he would!

• Site some time codes that you feel are important.
• 0.44: Nick has picked up the cup from the bottom rack and is placing it into the top rack. He goes to place it upside down and I make the comment "turning". Nick immediately turns the cup. This is extremely important to note, because it really shows how Nick's processing as sped up. It took a split second for him to react to my word "turning" and make the adjustment. Very happy mum!
• 1.03: I make a comment about the plate not fitting on the top. Nick immediately removes the place. He is listening and referencing for information. We are working *together*.
• 1.15: Nick is rushing ahead so I hold onto the plates and say that I am not ready. This is where Nick gets a little stressed BUT he is fine. I stand my ground.
• 1.39: Nick is *waiting* for what I am going to do next.. and when I pause for too long he quickly comes to me and nods his head for *yes*... too funny.. Great that he is knows communication is a two way thing.
• 1.55. Nick doesn't put any thought into how he puts the plate into the dishwasher. I see this and quickly put my hand over my mouth and then reference the plate. Nick observes my reactions and quickly understands what needs to be done and makes adjustments to the plate. Again, I am being mindful of how I communicate and Nick is referencing me for info.
• 2.45: Nick is rushing and the plate hasn't been put in correctly. I make a comment about the plate being up the wrong way so Nick then opens the door again and moves the plate. What I like about this is I am pushing Nick just one step further and he is going with the challenge. However, I am careful to move him along only one step... and no further.

• What did you do well in this frame? I like that I didn't let Nick take control and rush through the activity.  Although I set limits by holding onto the plates and not letting Nick have them, I made sure to keep a reassuring smile on my face and let him know that I wasn't ready yet. This really stopped him in his track.....  he got a little stressed at times (although, hardly). However, he coped really well and very cleverly brought in some non verbal nodding for yes and no... I laughed at this. For an unplanned interaction, I am actually very happy with the way it turned out. I also think that this particular interaction really was all about the connection between the two of us and that *doing the activity* came second.

• Is there anything you would change: I would certainly be more prepared! A lesson to me to *not * assume what Nick is going to choose to do! Next time I will insure that I have written up a framework plan for both activities!  

~~~~~~~~~~~~~~~~~~~~~~~~~

 
CONCLUSION: Due to the fact that I wasn't prepared for our planned engagement, I can now see the benefit of writing up a framework sheet for each activity. To get the most out of each interaction I have with Nick, I need to know what my goal is and how I am going to go about obtaining it. I need to be fully aware of Nick's level of competence and what I need to do to take him one step further. 

I can see from the above reflections and the video footage, that I forgot to highlight the easy/hard aspect of the interaction. What we were doing together was a hastily, put together plan that did not have a goal. I hadn't put any thought into adding a challenge. However, I am not going to beat myself up over it and will just chalk this one up to experience. We had a really nice connection... and that to me, was worthwhile.

I still think that spontaneous interactions and living an RDI lifestyle is important, however, the focus is on being mindful about what I have been learning and put it into practice. For the real learning to take place I need to plan and write up a framework for each engagement in order to move forward.

Does this sound a bit *over complicated* and am I *over thinking* my relationship with Nick? To put it into perspective.... we have just been invited out for lunch with friends ~ at a restaurant ~ with noise, kids and lots of mayhem! We are taking Nick!!! I would have turned down the invitation 18 months/1 year ago because Nick would not have been able to cope. In fact, I would have felt extremely stressed worrying about Nick's stress. This may sound corny, however, it is thanks to RDI that our life has taken a turn for the better!

~*~

Reconnecting after time apart...

Nick is always a little standoffish after I have been away from him for a few days. I don't think it is a punishment of sorts because he is not a manipulative child (to be honest, he has no understanding of this concept). I feel that his initial aloofness is caused by his *out of sight, out of mind* way of thinking.  Whenever I return home after being absent for a while, he needs time to re-adjust to having me around. Thankfully I have gotten over my feelings of hurt at the lack of acknowledgement from my boy. 

For the last couple of days we have been hanging out in the same space. We have been going about our same old regular routine without any expectations from me. Every now and then I will go and sit with him, or perhaps walk past him and ruffle his hair. I make the odd little declarative comment and wait for him to react. I notice that his processing time has slowed down so I remind myself to be mindful and wait just a little bit longer for his response. At one point I get irritated with both my children and send them outside to pick up the dog toys that lie scattered around the garden. I tell myself that I am a regular mother and I am allowed to get cross and be imperative in my manner (on occasion!).

Nick is thawing...

Two days of no pressure from me and my relationship with Nick is back to where it was before I left him. Nick is engaged and interactive. Our connection is strong. 

The easiest way to test that we were back on track was to take a trip to the supermarket. The following is a quick summary of a few things that stood out for me;

We get out of the car at the supermarket: Nick doesn't close his door properly (I go to tell him, however, I pull back and decide to wait). Nick realises his mistake and goes back to close the door. 

I say, "we need a trolley". Nick looks towards the trolleys, looks at me.. and then indicates that we must walk together to collect the trolley. He chooses the trolley and takes on the role of pusher! 

We walk together into the supermarket: Generally, Nick will go ahead and do his own thing for a while... although he never moves out of my sight and he always references me to check what I am up to. Today, he stayed with me and coordinated his actions with mine. If I slowed down, he slowed down. If I turned into an isle, he turned into an isle. I have to say that I had a huge smile on my face when I realised that he wanted to be with me and that he was very aware of what was happening.

We get to the fruit and vegetable section: I am hunting high and low for oranges. Nick follows my erratic movements. We communicate using non verbal facial expressions. He is relaxed and completely comfortable with the chaos of the moment.

Eventually, we reach the pet section: I am talking away to myself about finding a nice toy for the dog. Nick stops me at one of the shelves and points out the picture of a dog... it is our breed of dog!! I spotlight that it looks like our dog. I then see a litter bag with the picture of a cat on it. I point to the cat without saying a word. Nick picks up the bag so I have to tell him that we don't need it. I indicate the cat again.... Nick says "c"..."a"...."t". WOW, I didn't expect that! I was actually expecting him to make the *sign* for 'cat'.

Nick points out the picture of a man who is pulling a face and makes the sign for "cross".

We are wandering down an isle and I mention that I would love to take a photo of Nick: You know those little kids that put on a huge cheesy grin when it is photo time? Yep, that was my boy (this is new!). After I took each photo I showed Nick how it turned out and I made comments. i.e "oops this one is blurry", "oh no, you moved". Nick looked at each one intently and with purpose.

(very scary looking photo!!)

We get to the checkout: Nick automatically takes on the role of removing the items from the trolley and puts them onto the conveyor belt. His passive days are but a long ago memory! He looks to me often and I also make little declarative comments. i.e "wow, that one is heavy". "this is so easy". Nick notices a can of deodorant on the belt, he looks at me, he touches the can and then makes the sign for smelly! Oh my hat, all this experience sharing from Nick is amazing. HUGE! I quickly double check that I have understood him by saying "you are right, the deodorant is smelly", to which he nods his head for "yes". 

Who would have thought it ~ that my boy would one day be an equal partner... engaged, coordinated, co-regulated and capable of expressing his thoughts. My severe boy who used to be so stuck in his rigid little patterns and who used to cry when we drove into the car park of this particular supermarket. For many years, I actually stopped taking him anywhere because his distress was too much to bear. Who would have thought that he would be so relaxed and happy with all that was happening around him.

We are more than back on track, we are actually gathering speed........

~*~

I threw my boy a little curve ball and sent in a blueberry muffin for snack time. Without any fuss he picked out the blueberries and ate the muffin. The last time he ate a muffin was five years ago!! 

Taking a little break...

September has rolled around yet again and it is time to pack our bags and head off on our yearly adventure. If you have been following this blog for a while, you will know that Nick doesn't *do* travelling.

I have been throwing around a few titles to describe how I feel about taking off and leaving my boy at home......

Damned if I do and damned if I don't

Am I an awful mother for leaving my child in the care of others? How could I fly off into the wild blue yonder and leave him behind? How can I leave him in a country where we have no relatives to come to his aid? (The nearest being Zimbabwe). Is it terribly appalling to take this leap every year and hope for the best? 

What about me, my hubs and our first born?..... We love travelling and to be deprived of this may cause resentment. Our first born also needs time with us and in all honesty he doesn't get as much attention as his younger brother. This is the one time that we can be together without the added responsibility of Nick. As much as we adore our Nick, we do need time out!

Putting myself first

If you know me personally, you will be aware that I spend a lot of time with Nick. It may not always be productive, however, I am there for him. The only break I get during the week is when he is at school and it is very rare for me not to be at that school gate to collect him at 12.30pm. I don't begrudge having my boy with me and I make good use of my mornings to ensure that I do get some *me* time! There are days when I start to feel a little antsy and I know that I need a block of time away from my day to day routine. Yes, I feel it is important to put myself first (occasionally!), after all I am going to be parenting Nick for a very long time, far longer than what I originally planned. 


If I had a bucket list (and my mission statement for Nick)

This could also be titled... so many countries, so little time!
I blame my parents for my love of travel. My Welsh Dad went to sea at the age of 15 and travelled the world. My English Mum immigrated to New Zealand when she was 21 ~ it was a toss up between NZ and Canada! Mum met Dad on the ship to NZ and after 5 weeks (5 weeks, people!) Dad proposed! To cut a long story short, they settled in NZ and had 4 daughters. Very sadly, my Dad passed away too young ~ the very last time I spoke to him was to tell him that I was getting married. I miss him. A lot.

Back to the bucket list. I haven't made one, although if I do, I would have to include the following;
* Take Nick on a 2 hour plane trip for a family weekend away.
* Take Nick to Zimbabwe (by plane) to visit family.
* Take Nick to New Zealand to visit family (gulp).
* Me and the hubs to take Nick to the USA, hire a camper van and do a bit of touring (double gulp).

Bye bye boy!

Each time we go away I leave behind a letter of wishes. It is horrible to put together, however, very necessary. It is certainly not a professional letter, more a quick note on what to do and who to contact if we don't make it home! This post is ringing bells for me..... I dare not look at last year's post just in case it reads exactly the same as this one. Anyway, the letter and Nick's passport are all organised and I have placed them in my junk drawer.

It goes without saying that I am so excited about our trip, although very sad that we have to leave Nick at home. I do feel comfort that he will be well looked after and in my heart of hearts I know that he is happiest at home.

~*~

“A journey of a thousand miles must begin with a single step.” - Lao Tzu

RDI ~ changing my style of communication

I have been reflecting on my role as Nick's parent and how we have progressed over the years!

If I think back to six years ago I was very much the carer of my child. I fed him, bathed him, wiped his bum and tried to keep him happy. I drove him to school and placed him in the very capable hands of his teacher. I was the regular taxi mum and without fail took him to Speech Therapy, Physiotherapy and Occupational Therapy. I was a star. I did a *good job*.

Why did I try to keep him happy? 

My boy hated any form of change. He was extremely anxious. He couldn't cope with noise and/or unexpected noises. He needed his rigid little patterns. EVERYTHING had to be the same. He would get very stressed it we added a teeny tiny variation. We couldn't take him anywhere. Life for him was stressful. Life for me as his mother was exhausting. I seemed to be on a permanent merry-go-round and unable to get off. Life was fast, extremely busy and without reprieve. 

I found it far easier to let my boy be in control and to do as he pleased ~ rather than rock the boat and suffer the consequences!  I was a star. I did a *good job*..... or did I?

Roll in RDI (you knew I was going to say that, right?).

I did a lot of reading and learned a few titbits that I started to apply with Nick. (This was before we got involved with a consultant).

I stopped talking *at* him. I stopped telling him what to do. I stopped prompting him. In fact I shut up and became more non-verbal. I learned that eye contact was not something to be trained. It was more important (and meaningful) that Nick learned to reference my face and body language for information. I love that we have this in place. We can be at the supermarket and Nick will wander off, however, he is constantly checking to see where I am and also monitoring my reaction ~ am I okay that he is exploring, do I need him to come back, do I need help unloading the groceries...

I became mindful about the use of pausing and then waiting for Nick to react. His processing time was slow, therefore I waited.... and waited some more. Not 5 seconds, not 10 seconds BUT at least 45 seconds. I still use this concept and it works a treat. Nick is now much more capable of thinking for himself and his processing time has also increased dramatically. I could be waiting at the car, holding one half of a heavy bag of groceries and Nick will look to me, I shrug my shoulders and look at the bag. He will generally process this information and then come and hold the other half of the bag and we then carry it together...

I learned the value of cutting back on imperative language and placing more emphasis on being more declarative. Phew, this took ages to get used to. Let's face it, we are naturally imperative..... "What did you do at school today". "Pass the salt". "What colour is that?". However... and this is a big HOWEVER! Due to the fact that I have been using more experience sharing language and *inviting* a response, Nick has really come to the party. Again, he is thinking for himself, making his own decisions and responding if he wants to, not because he has to. This is a boy who was unable to do anything without a direct prompt. 

I found that chanting helped Nick transition and distract him from a stressful situation. This is another beauty. As mentioned previously, Nick couldn't cope with change of any sort. Heaven forbid that I wanted him to get out of the car when we got to the supermarket! The screaming, the crying and the pinching.... extreme distress. What I used to do was hold his hand and gently start swinging our hands in a nice calm regular pattern.... and I would chant at the same time, "walking, walking, walking". I still use chanting at times as it helps Nick to focus on what we are doing. I love how this helps him. (*Please note that getting Nick back out into the community was a very slow and gentle process!)

Self talk: I like this concept because I am highlighting my thoughts about what I am doing and what is happening. Nick is learning about *my* thinking process. I am now so good at this that I find myself talking aloud in the middle of the supermarket ~ not so cool when I am by myself!   

The above are just a few concepts that come to mind. It is all common sense really.... it is the putting into practice that makes a difference. We have the following picture at school... it is a great reminder for us all to be mindful about how we interact and engage with the children.

Oops, have just seen the time.... gotta go collect Nick from school. Have a great weekend. x