Celebrating sounds

The following board was created on Proloquo2go. Each box represents a sound or a word. For example, the word kah represents the sound 'K". Nick is really big on sounding out the letters in each word, therefore he is still tending to sound out "k...a...h" instead of listening to the sound and then repeated "kah". It is all a work in progress. 

I am sharing the following (very short) video just for fun. I am so delighted that Nick is making sounds and as time goes on, each sound and/or word is becoming more meaningful to him. He is beginning to connect the dots! 


Kitchen Classic!

I haven't been doing many planned engagements with Nick over the last two weeks. We have been cruising through the days, doing the same activities that Nick knows well and is comfortable with. I have been mindful about giving him opportunities to *think for himself*, however, I haven't set up any little challenges for him. I haven't taken into account the *'edge plus one' concept.

This is where the importance of having a plan in place really makes a difference. Nick needs planned engagements in order to progress. I need to put thought into framing an activity that ensures I am addressing 'edge plus one'. I also need to be very aware of how I am going to guide him. I don't want to *tell* him what to do as my wish is to provide him with the opportunity to *discover* and learn from his experiences.

When writing up a framework for my chosen activity, I ask myself the following...

What is my objective for the activity?
What are our roles throughout the activity?
What style of language am I going to use to ensure that Nick *thinks for himself*? 
What do I think Nick's edge of competence is?
What do I have in mind to ensure that he goes that extra step?

Note: When engaging with Nick, I continually ask myself, "is Nick operating on a conscious level?" Generally, when I see that he has *switched off*, I will pause and wait for him to reconnect.

This will all sound familiar if you have read, It's not about the carrot!

Anyhow, I thought I would share some video footage of an activity that we did a couple of days ago. Please remember that what we are doing and how I approach each situation is my own interpretation of what I am learning as we go through the RDI program. 

Funnily enough this is another kitchen activity, a place where we both feel very comfortable and relaxed. We are revisiting a familiar cooking activity and it is one that I know Nick feels competent with. I decided that I was going to bring in the challenge of using large tongs (Nick has used these once before, however, he needs more practice). Nick's challenge/plus one was to use the tongs to pick up and transfer each chicken piece over to the pan on the stove. 

I purposely cut the chicken up slowly, piece by piece in order to slow down the activity and really make it more meaningful. Due to the distance between the counter and stove, Nick was going to have to concentrate and apply enough pressure to the tongs to hold the chicken in place!

There are two things that I really like about the clip below (Kitchen one). Nick really perseveres with the task at hand and his resilience is shining through. I like that I spotlight what is happening so that Nick is hearing my thoughts as well as seeing what is unfolding before him. 

Just for interest sake ~ when we first started RDI, Nick was only able to tolerate 10 seconds of actually being with me!

I start off this second clip (Kitchen two) with my eyes closed. Nick was getting a bit stimmy and distracted. He kept wanted to touch my face and also put his face close to mine (note to self: the kid needs some deep pressure around the jaw line!). Throughout the activity I was trying to think of ways to slow him down a bit and encourage him to leave my face alone!! I don't know where the idea came from but I decided to close my eyes and see what happened. My plan was successful and Nick actually became more engaged.

Just for interest sake ~ our dogs were in the kitchen, however, they were fast asleep. What a luck!

The clip below (Kitchen three) shows that Nick has discovered how to manipulate the tongs to hold the piece of chicken. I purposely spotlight his success.

We are nearing the end of our planned engagement (Kitchen four). Although Nick is very engaged, I can feel that he has just about reached his limit with this particular activity. However, I just want to push him a tiny bit further in order to finish the cycle off placing the chicken in the pan. I took care to spotlight that Nick was able to pick up the chicken and put it in the pan. We end on success!

So, there you have it. A lovely planned engagement with Nick. He was connected, referenced me for information and wasn't stressed when something didn't work out as planned, He was thinking on a conscious level and at times actually seemed to enjoy spending time with his mum. I think that he did great! :)

As for me, I am happy with myself that I took it slow and ensured that I paused a lot, in order to give both me and Nick some thinking time. I provided scaffolding when necessary and also stepped back when I thought Nick needed a little push. I feel that I am getting better at speaking my thoughts and spotlighting important moments.

Nick also figured out how to use the tongs ~ win, win!

Feel free to comment or ask me any questions!

Reasons to be Cheerful ~ Birthday kid!

Reasons to be Cheerful at Mummy from the Heart

It has been a while since my last link up to #R2BC. You know how it goes.... life gets busy and then before you know it, the months have flown by and phew we are facing the end of May.

For this post I thought it would be prudent to focus on my son. He turns 14 on Saturday and the month of May has always been a topsy turvy time for me. Why so? Well, my boy is severely autistic and he is WAY behind his typical peers. Each Birthday has been a milestone missed and a sad reminder that he is very challenged.

Anyway, enough of the blues!

This year I choose to celebrate Nick's Birthday and here are my reasons why...........

I am overwhelmed that my boy is beginning to talk. Never in my wildest dreams did I ever think that he would be able to say a word. At this stage he is still sounding out the letters to make a word. For example; tonight he said "f...i...sh". As of the last two weeks he has been saying "car" and "cut". Believe me ~ my heart is singing big time!

Nick has become incredibly flexible with any change in his life/routine. If you know autism, you will be aware that many kids on the spectrum (not all) rely on rigid routines because of their need for sameness. My boy used to be like that, however, I have been working on this issue for many years and it is now paying off. Each time we go out into the community and I observe my Mr Flexible, I just grin from ear to ear.

I spend a lot of time with Nick and of course there are days that he drives me crazy, however, I find him to be a very easy kid. I love that over the last two years our relationship has really blossomed and he is now happy to hang out with his old mum (this wasn't always the case!). 

This year, I choose to celebrate Nick's birthday.

Thank you, Michelle, from Mummy from the Heart, for providing me with the platform to focus on the positive aspects of raising a child/teen with autism.

Nick's first Birthday cake in ten years!

Through the eyes of a stranger

Our favourite place 7am

This weekend has brought about the quiet realisation that my son is profoundly autistic and also has an intellectual disability. I, of course, have always known this in the back of my mind, however, it is not something that I have wanted to think about too deeply. Let's face it, there is always the hope that something miraculous will occur in order to make him more like his peers.

It is not going to happen. Nick will never be like his peers. Am I okay with this?

No, not really......

Whilst I accept Nick for the person that he is, I still mourn for the person that he could have been. 

I mourn the fact that I have to make provision for his future. I have to be prepared for all eventualities because as it goes, he will outlive me and who will look after him when I am gone?

Our favourite place 9am

On Friday we went to visit a residential facility that wasn't very far away from our favourite place. In fact we planned the visit to coincide with our weekend at the cottage.

As we drove into the grounds of the facility, we were immediately struck with the peacefulness of the surroundings. The Manager was a lovely woman who genuinely cares for the people who live there. She spent over an hour and a half with us, explaining how the facility was split up into areas of ability (gulp) and how the days were structured in order to be productive and meaningful for all.

We wandered around the grounds, visiting the different houses that catered for the residents. We were blown away with how happy everyone seemed and it was reassuring to see they were treated respectfully by the many staff. 

Nick was not happy and showed his stress by continually tapping my shoulder and saying "car". In all fairness, we were there for a long time and he was included in the walk and talk. **Woohoo, love that he can now say "CAR"**

Our favourite place 10am

It was hard not to observe Nick through the eyes of the Manager. From her perspective I could see my boy's limitations and his inability to integrate with the other residents. Through her eyes, I understood why she took us to the residence that looked after people who had high needs. Through her eyes, I understood why she placed particular emphasis on the fact that they did have residents that were low functioning (her words, not mine).

I observed the Manager watching Nick and taking note that his stress level was actually not that bad. Through her eyes, I understood that she would *consider* placing Nick on the waiting list. Through her eyes I saw Nick sit with the residents and to which she exclaimed, "oh, he does look to be social!"

However, through my eyes, we hit a snag. If Nick was to be placed there today, he would be unable to participate in any activity that is organised for the residents. He would be totally dependent on the adults around him. He is only able to communicate with those nearest and dearest to him. I can only but imagine how scary it would be for him to be left there without us. Yes, the facility is for intellectually disabled adults, however, Nick is autistic and the facility does not cater for autism, although they were quick to say that many of the residents had autistic tendencies

Regardless of the fact that they don't know autism like I do, I will still be applying for a place for Nick. It is my Plan B as I have to ensure that all my bases are covered. If he is accepted onto the waiting list, I have at least 10 years to work on Plan A.

Our favourite place 12 noon

There you have it. A few reflections on the reality of our life!! :-)

Hopeful Parents ~ What if?

Where to start?

I suppose the easiest thing to do would be to jump in feet first and blurt it out.......

I am going to visit a residential home for my teen. 

Damn, writing that sentence hurt far more than I thought it would.

If you have been following my Hopeful Parents posts, then you will be aware that a close friend of mine was involved in a tragic accident and she has been left with a severe head injury. She is no longer capable of caring for her 15 year old daughter who has special needs.

This has been a big wake up call for me and I have been asking myself the question, "what if anything happens to me and/or my husband?" It is a worry.

I realise that most of us don't even want to think so far into the future, however, as I am discovering, the future arrives very quickly. My son turns 14 this month. If he was walking a typical developmental path, he would be leaving home in just under 5 years!

As it stands today, my son will never be independent and will always need life long care. 

Scary thought, hey?

In my country, there is very little in the way of residential facilities for adults on the spectrum. In fact there is nothing in our province. The home that I am going to be visiting caters for adults with Down Syndrome and Cerebal Palsy.  It has a good reputation, although I don't actually know much about what life is like for those living there.

Do I want to put my son into a residential home? Of course not! I am happy for him to live with me forever. However, remember that my forever is not his forever.... and again, what will happen to him if he was to lose us. Circumstances change at the flip of a switch.

This home has a waiting list of 7 to 10 years, perhaps longer (and this is for the first person on the list!!). The cut off age for entry is 31. All that is needed at this stage is to place my son's name on that list..... just in case!

Will they turn my son away because of his autism? Well, that remains to be seen!

I will be visiting the facility with one thing in mind...... 

Is this residential home the right place for my son?


* This post was written for Hopeful Parents