Thursday, December 29, 2011

Do we do too much for our children?

I was going through my old drafts ~ you know, those blog posts that were started and then never finished! I found this one, dated March 2011.....


I have a child who wasn't fully toilet trained until he was ten years of age.  He still needs assistance with dressing. He has only just begun to put on his own shoes. He doesn't know how to brush his teeth. He can't undo his seatbelt. He can't make toast or cut up an apple......... and the list goes on!!


Nick does have motor planning issues and sensory problems blah, blah, blah!   However, have I been a bit lax in encouraging independence?  Yes, absolutely!!  It is all too easy to use the excuse, "oh, he has special needs!"  Silly me - I should have been encouraging and motivating him from the very beginning. Although, to be fair on myself, young Nick was never too keen to do anything with me. He was resistant to any suggestions and extremely stubborn to boot! 


eight months later....


I am pleased to report that Nick is now extremely capable of dressing himself, although at times the t-shirt is on back to front! As for the shoes, what a breeze.... dead easy for my boy! (don't ask me about shoelaces!!). He can undo any seatbelt and we now need to teach him how to put it on! The toast making is a bit iffy, although he collects all that he needs and also puts it away when finished. I haven't really made an effort with the apple, the way Nick waves a knife around is bit off putting! :) The toileting issue ~ at times I have responded to Nick's "uh,uh" (mama) only to discover most of the toilet roll unraveled on the floor. I quickly realised that I need to teach him how to tear a few strips off the roll. We are still working on this one!


This past year has seen me be a bit more proactive with Nick! The extra time that I have put into my boy has also made me more aware of his developmental level and what areas need to be addressed. This year has also made me realise what Nick *can't* do. For a kid with a multitude of challenges he is doing great... BUT he could be doing better! Life has been too easy for him, so easy that he is quite content to sit back and wait for us all to jump to his every whim. OK, that is a bit of an exaggeration but I am sure that you get my drift! He has a learned helplessness about him! On a positive note, Nick is no longer resistant to interacting/engaging with me! He can still be a bit stubborn, but hey, he is very nearly a teenager! :)


My goal for next year, my New Year resolution so to speak, is to use any opportunity to help Nick discover, learn and succeed. There is no rush. We will take it slow. We can do it! We will do it!


~*~

In the following clip, Nick is trying to take the lid off the toothpaste. Yes, I know.... he is 12 and doesn't know how to remove the lid! Why is this you ask? Well, ummmm, *blush*, I have been doing it for him! 



~*~

This video clip ran for 10 minutes, however, because I don't want to bore you silly, I have edited the footage to show you the first few seconds and the last few seconds. The clip shows Nick's lack of awareness of my perspective......... but wait until you see the end of the clip!!




~*~

Helping Dad unload the car!!


~*~

HAPPY NEW YEAR!



Thursday, December 22, 2011

Holiday assignment ~ you have got to be joking! ;)


Dear RDI Consultant

I am sorry to say that I have been a bit slack with my boy Nick over the last few weeks. It has been a crazy time coming up to our holiday season. Then, as I am about to get with the program again, my boy gets sick!  As his health slowly improves, our visitors arrive!

Life happens right? 

Anyway, we are on a go slow with the boy, but that's ok........ there will be plenty of opportunities during our school holidays to help Nick to *think for himself*. We have lots of time to actively *engage* with each other!

EeeeeeK!!!

Dear RDI consultant

What is this that you have thrown at me? An assignment for me? But we are on holiday, my brain is parked in neutral for the next three weeks!

You want me to do what?

"Describe how you have succeeded in differentiating your role as a Guide, from functioning as a playmate, entertainer or equal"

Right, hmmm, let me think..........
Let's look at playmate, entertainer or equal! 
It is so much fun to be Nick's entertainer, I can amuse him, keep him happy, get him laughing, jolly him along, make life enjoyable for him. BUT this means that I get to do all the work, he is sitting back (think Al Bundy!) and absorbing all that I am doing for him! Sure we may be *engaged*, however, our interaction is one sided, Nick does NOT play a role!
As for being a playmate.... phew, this is hard work.  My child is not into playing, therefore, once again, I am putting in all the effort, trying my best to get him to play with me. True *engagement* is quite difficult because Nick is not interested in 'playing'. Yet again, our interactions tend to be one sided, Nick is not an active participant! I am sure that you get my drift, you can hear what I am saying ~ trying my best to be an entertainer, playmate and equal requires a lot of work and it can be very exhausting for ME!

If I look at my role as being the guide in my relationship with Nick, I immediately feel calmer. Guiding is not about me working hard, it is about taking opportunities to engage with my son. It is about assisting him to be an active participant. I am forever mindful of giving him the time and space to process information. I provide the scaffolding that he needs to feel successful. I add a little challenge to make learning possible, however, I do it in such a way that Nick doesn't become stressed and unhappy about being with me.  As his guide I need to help him build positive episodic personal experience memories so that he will feel competent and prepared to return to a particular engagement. Through my guidance, Nick has learnt to trust me, he wants to be with me. He knows that I am not going to overwhelm him and push him too far beyond his level of competence. 

Yes, I use activities to help with our interaction, however, the activities are only the *prop* to true engagement. I know that my guiding relationship with Nick is all about *engagement*. I am also very aware of his developmental level and realise that there are stages that he has missed out on. Those stages are the very foundation of his development and these need to be addressed. As his guide, as his parent I am aware that what I do with Nick is not hard work, there is no pressure on me to perform........ it's parenting!


Describe how you have identified the productive and unproductive roles you take with the Student

Well, this question is relatively easy to answer! Although, if you had given it to me a year ago I would have battled to get my head around it!!

Unproductive roles: These are unsatisfactory interactions where engagement with Nick is minimal. Nick is passive and unresponsive. He shows signs of anxiety and uses avoidance tactics. I have discovered that If Nick *feels* he is required to perform, he will immediately freeze and then repeatedly make the sign for "finished". I end up being the one who is doing all the work and making the effort to keep our interaction going. There is no flow between us, no reciprocal engagement or any interest. To give you an example; I mention to Nick that I need to stack the dishwasher and I invite him to help me (very important ~ this household chore is being used as a *prop* to help/encourage engagement! My focus is not on the chore itself!). Our first few seconds can be very interactive and it may be possible for me to add a little challenge, however, if I push him too far and keep the interaction going for too long, then we both lose the plot. Our interaction has turned into a task and we have become unproductive!  I need to take great care not to overwhelm my boy. It is a fine line to walk, too much pressure and Nick can't cope!

Productive roles: These are very easy to identify. I feel calm, competent and very engaged with my child. Nick is focused on me and what we are doing, we have lovely joint attention and Nick plays his role with confidence. Our interaction is not hard work, it feels relaxed and natural. Our supermarket visits are a good example of this. Gone are the days when just driving into the car park used to stress out my boy! Now he hops out of the car and waits to see what I am going to do next. He checks out to see if I need a trolley and will happily race off to collect one. We are in sync with each other as we trawl the isles. Nick is comfortable with constantly changing roles and I feel at ease throwing him little variations. He doesn't perceive our *outing* as a task and I am mindful about our roles.  All in all, our trips are generally successful. :)


Dear RDI consultant


I realise that I still have some work to do before I have completed my assignment, however, I am sure you will agree that the following can wait for a bit longer!! 


Share your plan and progress to eliminate unproductive roles and habits.


Describe your progress in maintaining an optimal emotional state for both yourself and the Student, during Guiding Engagement.


To be honest, I wouldn't have a clue where to start....... J

One more thing before I sign off. Thank you for your continued guidance, you have helped me tremendously. I have learnt so much this past year and Nick has made such lovely progress. For a non verbal kid with classic autism, he is doing great!


Have a wonderful Christmas and a Happy New Year with your family and friends. 


Di x


~*~

Sunday, December 18, 2011

The Holiday Season


I woke up this morning in such a blue mood ~ life can't be all sweetness and light you know! I then proceeded to write down my thoughts and you will find these below, written in black! I certainly succeeded in making myself feel worse and the day was deteriorating quickly; and it was only 8am!


I thought to myself "hang on a minute, forget the pity party, turn this around and remember the positive". So here I go.........



HOW DO THE PARENTS (as in me!) OF A SPECIAL NEEDS CHILD FEEL?


I have been thinking about this a lot......

On the bright side, it's good to think, write and get those feelings out!
What do you think Psychminded?


What do school holidays mean to the parent of a child with special needs?

This is a tough one! Realistically speaking, children with special needs require a lot of time and energy. I really miss having time to *myself*. On the bright side, it's lovely to slow down and have that extra time to spend with the kids

How do they feel when their friends are having family holidays?

On the bright side, you make a plan to have your own family holiday! 


How do they feel when they see and hear neurotypical kids having neurotypical fun?

On the bright side, you rejoice the innocence, the laughter and the normality of it all!


How do they feel when they miss out on an invite because of their child?

On the bright side, you come to terms with the fact that your priorities have changed! 


How do they feel when they accept an invite, but by choice leave their child at home?

On the bright side, you know that you have left your child in capable hands and it is good for you to have some 'normal' time!


How do the parents of special needs children feel when people are unkind about their  situation?

On the bright side, you dump those people who are a waste of head space!


How do they feel when people actually don't take into account their situation?

On the bright side, you realise that they don't live your situation so therefore, they don't understand your situation!


I am sure that Mr and Mrs Joe Public have NO idea what having a special needs child entails!

On the bright side...... hmmmm, I can't answer this one just yet ~ however, I certainly wouldn't wish for them to be in the same situation!

How do they feel when frowned upon by Joe Public?

On the bright side, you learn that by being gracious you win friends, sympathy and understanding (even though you may be secretly wishing that their pubic hair is infested by 1000 camel fleas!) hee hee! :)

What are their pet hates and what to do about them!

No bright side for this one. My pet hate is when people speak to Nick like he is a toddler ~ get a grip people, look at the kid, he is going to be 13 next year! 

Enough already. Short post. Light post. Am still chuckling over the camel fleas! Life is good ~ 80% of the time!

My two kids just chilling!




Monday, December 12, 2011

Parents to Parents ~ advice for newbies!

Dear Parents


Perhaps your child has just been diagnosed with autism. Or maybe you have been traveling the autism road for a couple of years!


Either way, please be aware that you are not alone! There are many parents just like you. Look for us in your suburbs, your towns or cities. You may have to stretch your wings further and look throughout your country. You will most definitely expand your horizons and look to other countries. If you go looking, you will find some really amazing people, friends who will walk with you, and at times may even carry you.  Be warned, you will also find some wacky and not so wonderful members of this crazy club that we belong to!! Listen to your inner voice.... it will guide you!


I have a child with autism, or if you prefer, I have an autistic child. It doesn't matter what description I use, I still have a child with a disability. He is autistic and his diagnosis is not going to change! I also have this blog... a blog that describes my experiences. I am one voice of many different voices. You might not like my voice but that is ok ~ I am comfortable with that. You have to find the voice that fits you, the one that you are comfortable with!


This blog post is about sharing information. A few words of wisdom that might be useful to you. 


First of all, please take the time to read this post written by Jess, Diary of a Mom ~ Welcome to the Club


You may also like to read these two books!
There are many 'autism' books available, however, these are the two that have stood out for me this year!




If you are feeling a little raw you may find that Gravity Pulls You In is a bit of a tough read. If you don't read it now, save it for later. It is my all time favourite book and it definitely needs to be on your bookshelf! You can find further information here.


The Autism Experience was released this year (2011) and is perfect for the new and not so new parents. I have written a review on this book which you can find here! You will find more eloquent reviews on Amazon or here.


For further information to help you, I have called in some heavies..... Parents who have experienced what you are experiencing. I expect the following list to grow ~ as and when I receive more comments, I will add them to this blog post!


Snippets of information, advice and words of wisdom from other parents.........


imawestie
No matter where in the world you live, "The Autism Experience" is a great book which provides insights into elements of caring for a child as they move through from pre diagnosis, through the diagnosis process, and onto life with that diagnosis. It goes into quite a bit of depth with families from all over the world.


imawestie
No matter how many experts there are in children's health, children's behaviour, children's development, and children's education, there are a much smaller number of experts in your child's health, behaviour, development and education. Mainly, yourself and your partner, and a few more people close to you. If something somebody suggests - probably all in good faith - feels wrong to you then until you get more information it probably is.


Donna
It wasn't too long ago I was the new autism mom and you actually forget those feelings of dread and fear and total confusion that you experienced and with all the different kinds of info out there it is just plain scary. Firstly to tell her she is not alone and that she will survive this! Secondly that research and understanding how the therapies work are very important and thirdly, a mother knows best, trust your mother's instinct, its almost always right. Lastly no question is a stupid question, this was what I was most afraid of.







Jen
I sometimes think of how much more I could have done with my son when he was a toddler. Emphasizing facial sharing, referencing, and shared joy. I would also recommend finding a good doctor to help with the biomedical side from early on!

It takes about 2 years to really get a good handle on what the impact of autism on your child and your family is going to be. Get ready to be told all kinds of contradictory information by different parents and professionals - use your gut instinct to go with the guidance/suggestions of those you really trust. Keep your skeptical spectacles on. Do your own research into interventions and ask lots of questions. My questions are always about what evidence there is that xxx intervention improves the quality of life and life chances for children with autism. By this I mean that an intervention should help children to improve the skills and competencies needed to make and maintain meaningful friendships and relationships, find and keep fulfilling employment and live independently. The last 2 may not be 100% achievable for all those on the spectrum (eg if they have learning disabilities and/or co-occurring conditions) but with the right intervention, meaningful friendships and relationships should be achievable for all. Network, network, network with people who are knowledgeable and have trodden this path before you. Big hugs and good luck :)

Sheraine
It may be overwhelming at the start....but listen to other parents around you...they really know what they're talking about because they live with autism everyday...leave yourself open to advice and suggestions and know that what may have worked for one may not necc work for your child...know that each day you are going to learn from your child as you attempt to teach him/her...don't jump on the band-wagon of EVERY therapy/method of intervention that you hear about....trial and error....chin up...you can do this...the tiniest success will be your biggest reward and reason to celebrate....it gets better as you empower yourself to get involved in your child's life like never before....because no amount of therapy and intervention can be 100% successful if YOU YOU YOU and YOU are not on board!


Me
From my own experience, I would really focus on *engaging* with my child. When my child was a toddler, I spent so much time trying to teach him skills so that he could keep up with his peers, that I forgot about *US*. He didn't manage to keep up with his peers, however, we have *US*.

Kats in Dublin, Ireland
Hi, My daughter was diagnosed just before she was 3 and she is now 4. I completely dived into the autism world (being a bit obsessive myself!) and have read a serious amount of books, blogs, magazines and have done tonnes of parent training. To be honest I probably spend too much time obsessing about reading this and that, ordering certain toys, books, dvds etc instead of just engaging with her all the time and trying to connect. But its all about balance isn't it and I think I'm getting a better handle on it now and what we need to focus on. Good point above from Zoe re it taking about 2 yrs to fully settle into it all. The world of autism is overwhelming to say the least. Of all the books I read, probably Temple Grandins (autistic herself) 'The way I see it' was the most practical and insightful to me. She has a great ability to explain things exactly as they are and has a very matter of fact manner in everything she writes (I imagine this is where autism is an advantage!) 'Ten things every child with autism wishes you knew' - Ellen Notbohm is brilliant and a quick read and great for a newbie. I did the Hanen parent training course 'More than words'. This is a worldwide Canadian parenting training program that consists of 8 workshops. It is hugely beneficial and practical in teaching parents how to get their child to communicate more and how to encourage interaction and communication. I would strongly encourage any parent to look into this. I think all autistic kids should try a GFCF diet for 3 months and see if it makes any difference..then go further if seeing progress. I have dipped my toe into the biomedical approach, but overall I try to use common sense to make sure my daughter is as healthy as possible and absorbing her nutrients. If interested in this the 'gut and psychology syndrome' by Natasha Campbell is excellent or another option would be a book written by a 12 yr old asperger boy Luke Jackson, 'a user guide to the GF/CF diet', which is great and very readable.(Di ~ I have this book if anyone would like to borrow it!) I really liked the DVD 'Loving lampposts' which explores the changing world of autism and debates about autism: is it a disease or a different way of being—or both? Directed by a parent of an autistic boy I would strongly recommend this to anyone interested in the neurodiversity movement or learning more about autism in general. Lastly, I think anyone new to autism must look at a developmental approach; we owe it to our kids - floortime, sonrise and RDI make so much intuitive sense to me. RDI is my particular favourite, I have not signed up yet and this is something I feel very guilty about as time is ticking by but I hope to in 2012. At the moment I work mostly on trying to help my daughter develop fundamental social skills by playing games all the time, turn taking over and over and over and other methods where I try to get her to help with purposeful practical jobs in the house. (easier said than done!) I could write on this forever. Hope this is of some help!! 

Such a great topic to blog about Di! Lots of great comments here! In addition to my own blog on the topic...What is RDI?, I would really stress, like you the engagement piece. One of my suggestions is to make a mission statement for your child...because there is so much advice and as a parent I had to stay focused on what the end result was..long term success. This does not come with just trying to get a child to act a certain way all day, it comes with giving a child a second chance at developmental milestones. The more we come to this realization, the less the crisis will be of our children growing up smart and able to do skills, without understanding relationships or perspective! Start there as a beginning...and everything else falls into place! :) 

Wow Di - where does one start.

My advice to a newbie would to be read, investigate and educate yourself. Don't rely on the advice given to you by one or two people. Every single child is so different that only you as the parent (and usually the mother) know just what is right for your particular child. Learn, keep learning, adapt what you have learnt and keep adapting. The situation is fluid. Never stop learning and never stop adapting. It sounds like a tall order but if you don't your child will stagnate and you will become frustrated.

I do not know if this is good advice but life is not fixed, it is not uniform and by adapting ourselves we are passing on the message of change and learning to adapt to our children.

Michelle


I had to pull back the cob webs of my mind for we have been living with autism for two decades! A couple of big picture things stand out in my mind: 

(1) When pouring through the myriads of ways to address autism, sort out what is remediation (repairing) and compensation (getting around an obstacle). Too much remediation might make the child more frustrated because working through developmental milestones is hard work. Too much compensation may box the family into a corner of not being able to go anywhere or do anything. Practical example: when my daughter was four, I made a point to skip aisles (which caused a tantrum because she craved predictability). Developmentally she needed to learn that change is okay. To compensate, I would alert her to pending change "One, two, three, wheeeeee!" and push the cart really fast to give her vestibular stimulation which calmed her down. Imagine how awful Christmas shopping would be if you could never skip an aisle!

(2) Focus on development and relationship, not what is age appropriate. We try to "catch up" our kids by working on age-appropriate goals that make no sense for them developmentally. The "catch-up" mentality leads to the habit of frustration, meltdowns, tantrums because the child is overwhelmed.

(3) Even if you cannot afford Relationship Development Intervention, three things will forever change how your child communicates: slowing down to the pace of your child to give them time to think, matching their verbals rather than dominating the conversation and making them feel like a competent communication partner, and emphasizing nonverbals and even focusing on one kind at a time until the child is comfortable with interpreting and expressing them.

(4) Try to escape the culture of therapy. Just because a therapy exists and is free doesn't mean you have to do it. Think carefully about the precious time you and your child has. Examine how much your and the child's mental and physical energy is spent in the car, waiting, doing, etc. Is that therapy really paying off in the child's development and well-being. So many things can be done that tap into multiple areas: you can work on fine motor, speech, sensory and relationship skills while doing a chore (cooking breakfast). Find professionals who will help you do that

There is so much involved after the diagnosis...

-Absolutely spend time to get the connection stronger between parents and child. Aaron was so happy on his own, we left him to it at times. It was such a contrast to his elder sister who was a needy baby/toddler.
-For me it was important to do loads of research
-The gluten free casein free diet made a huge difference - it works in some cases but not others, but it is certainly worth keeping a food diary 
-I found a wonderful book soon after our diagnosis about the process of grieving and acceptance of a disabled / special needs child. There are lots of blogs about this now, and I think an important part of the process. I think there are parents who don't go through the full grieving process to acceptance and get 'stuck' at anger or some of the other steps. 
-Know your rights
-Ask for help - the only way to care for others is to get care for yourself
-Start some form of early intervention ASAP, whatever method feels right, but the earlier one starts the better

I think those are the top issues for me...


Stranded Mom
Autism is a chronic life-long condition. Try your best not to fall in to the pit-falls of quick cures and fixes. As with any child with any need, you are required to make a life time investment through your relationship, education, understanding and compassion.

As with any child, a child with autism also grows, develops, learns and CHANGES. If your child is spinning things now, know that he may spin them for the rest of his life, but he will also learn to do many many other things. 

Focus on the big picture. Focus on keeping an open mind and most of all be open to self development, lifestyle change and replace fear of the future with love and appreciation of the now. Basically count, appreciate and celebrate the little successes. Have expectations from your child based on his/her abilities. Find friends and support with fellow autism families. Find strength and hope in the development and learning of your child. Build a relationship based on respect, dignity, love and safety but always keeping in mind the abilities of your child. Find strength in your developing and improving relationship with him/her.

Good luck and ask questions!


Janet
All wonderful Comments!!!
I had a few ideas too Di, nothing wonderful but was just remembering how I felt at the time.
1 Breathe !!!
2 Don't blame yourself or your spouse you are NOT to blame and thoughts like these shift your focus from staying productive.
3 Remember to take care of yourself, this journey is a marathon not a sprint and you need to conserve "energy" for the trip.
4 Read lots of information BUT do NOT believe everything in print, trust your instincts as to what is right for your family.
5 I felt treating my son with dignity was essential and if I saw his spirit housed in a defective body it was easier to engage with him in love and respect.
6 I have loved learning about RDI and am sure the therapy has had an enormous impact in our lives. 
Thanks Di for all you do to encourage Moms like us with our different circumstances.

Friday, December 9, 2011

A community of women!


Not so long ago, I spent four hours with a group of women in celebration of one woman. The central figure of this group brought us together, she is a key figure in the lives of our children, she has nurtured us all at some stage or another. Our children have flourished under her direction. Each and every child is treated as if they are the most important child. We all think that she is marvelous and our children adore her!


Last year she needed us...... and I like to think that we were there for her.


At the end of last year someone came up with a plan, I can't remember who..... We decided to have a ladies afternoon tea and we pulled in all the people that mattered to our central figure! 'We' being mums of children who have special needs. It was one way of us to show our support ~ and we enjoyed it so much, that we decided to do it again this year! :)




What an amazing group we are ~ as our children differ from each other ~ so do we! We all have very different personalities BUT we click!  Because of our common bond, we respect and admire each other. We may not agree on everything but that is what makes the world goes round. How boring life would be if we were passive and forever agreeable!! To be part of a group like this is a privilege. To have other women who understand, commiserate, advise and give comfort is immeasurable.


As my eyes wander around the table, stopping at each woman along the way, I am aware that each of us has had to really *feel* the sadness of having a child with special needs. I am also aware of how far we have all come, we have survived, we love our children and accept them for who they are. 


If you are not part of a group like this.......... find one, join one OR create one!


Life with a special needs child is not easy.  For this particular group it is not about fabulous grades, wonderful holidays and shout from the treetops 'success'. It is not about empty nest syndrome, our child's first love, first job and shout from the treetops 'success'.  It is about 24 hours, seven days a week, 52 weeks a year of continuous concern for our children. 


Please, if you are not part of a group like this..... find one, join one OR create one!


We all need our own community of women. 


~*~


Friday, December 2, 2011

Guest Speaker at Browns School

I am not a great fan of public speaking, however, I also find it very difficult to say no! Of course it is very flattering, being asked to talk about my life with a special needs child, my child with autism, my life, what I do with my child! Within the right company I can talk about my situation until I am blue in the face! Put me in front of an audience and I am a nervous wreck, until I start talking! Then the words start flowing with some extra words thrown in for good measure. I probably waffle on! I never remember! 

Putting together a presentation also doesn't come easy to me. I spend hours, days, deliberating about what I want to get across, what I am going to say and how I am going to blend my words with a powerpoint! Then there is the practicing of presenting the presentation........ until I am so sick of my words and I start to question myself, are they the right words? Finally I get to the stage of 'it's good enough', I can do no more!!

I have attached my presentation to this post! You will see that I have added in photographs of my powerpoint to *blend* in with my words! Thankfully, my 'talk' for Browns was only around 15 minutes, so you will find that my notes are a very quick read! 

My words below are just that... a reminder to me of what I want to talk about. I don't generally read my notes verbatim, I use them as a guide. Therefore, what you read below differs somewhat from what I actually said at the time! Same words said differently! 

Why was my presentation so simple? Why did it not have a lot more information about communication? Why did I not lecture to the parents and staff about the IMPORTANCE of creating connections/building relationships? There is so much more I could have said!

In that audience were 30 children, 30 children with Autism Spectrum Disorder! I may not of been aiming my words at them, however, they were the ones I was mindful of.


Thank you for inviting me to speak today, it’s great to be here!

As you all know, there is so much to talk about when it comes to autism!  Education, medication, anxiety, sensory issues, motor planning problems, speech, people we meet along the path, creating a balance in our busy lives, coming to terms with our situation, workshops and conferences….. The list is endless!

It took me a while to decide what I wanted to talk about!  In the end, I thought it best to go with the easiest option! So therefore, I am going to share some information about my son Nick and how we play around with communication!

Before I start, I would like to read you the following paragraph and please bear these words in mind throughout my presentation.

“Children with ASD found to experience particular difficulty with: gaze shifts, shared positive affect, joint attention, using a range of communication means and functions, use of gestures/non-verbal’s, social affective signaling and imitation.”



We are a family of four. That’s it. We don’t have any other family in South Africa! My family live in New Zealand and the UK. Allan’s family live in Zimbabwe. This photo of the three of us was taken at a rugby game. Sadly, we can’t take Nick because the people and noise would be too overwhelming for him. He is also much happier to stay at home and play on the computer! 



12 ½  years old
He is unable to talk, although he can say a few sounds. His favorite sound at the moment goes something like this….. “sh….t”!!
Nick can’t write his name, he can hold a pencil but he doesn’t have the ability or the muscle tone to actually draw or write.
His math’s is hopeless…. He knows his numbers but he really battles in this area
Nick has sensory and motor planning issues!
He is unable ride a bike or climb a jungle gym!
Nick doesn’t know how to play, he has never shown any interest in playing with cars, ball games, building towers of lego…. You name it, he doesn’t do it!


However……….

This boy of mine loves books, he flips though magazines and books looking at the pictures and he will often stop and point out something to me.  He also really enjoys me reading to him and I always try to include him in the process.  It goes without saying that he loves T.V, computer, music and the iPad ~ all typical kid stuff!!
He LOVES school! JIn general he is a happy and gentle kid!
Even though Nick doesn’t have speech, he can communicate and what is so nice is that he is beginning to point out things of interest in his environment.
He is interactive child and he loves being with us!





These are some of the communication tools that we use with Nick

Basic sign language
GoTalk 20
Lightwriter
iPad

Nick has basic sign language, although generally he will only use one sign at a time, he can’t blend more than two words together to make a sentence. We also use the GoTalk20 and he enjoys interacting with this, however, he can get over stimulated on repetitive sounds. Nick knows all of his letters and he can find his way around a keyboard with ease. He uses the Lightwriter at school and although he should be using it at home, I must admit that we are a bit slack!  The iPad is a recent purchase and I also bought Proloque2go. This is a great app for communication purposes, although at the moment we are using it more for story time. We have a lot of fun creating story communication boards.  Mind you, Nick is much more interested in playing simple word games or actually listening to stories on the iPad, OR if he can get away with it, cruising YouTube!!



Now, these tools were effective in getting Nick’s needs meet! However, over the years, as I have learnt more and more about autism, I realized that Nick had missed out on a lot of his early developmental milestones, especially those concerned with communication. He was unable to express himself in an experience sharing way. He didn’t realize that he could reference my face and body language for information. He was unaware of the power of non-verbal communication!  

There was no real ‘connection’ between us!

One of the ways I went about helping Nick with this, was to change my communication style….


Due to Nick’s lack of speech, I found that I overcompensated for this by endlessly repeating instructions and observations. I always jumped in and spoke for him. I didn’t give him the opportunity to learn to look to me for further information. I didn’t allow for the fact that his processing was slower than the average child. I would say something to him and because there was no immediate response, I would repeat myself. Therefore, he was still trying to process the first piece of information and I then bombarded him with more words!!

I have decreased my verbal communication! I am now more mindful of ‘NOT talking too much’.
I have also increased my non verbal communication. I use a lot more facial expressions and gestures. I also use noises to gain attention or to spotlight something worthwhile.

Being mindful of non verbal communication helps create that connection between us!



Because Nick takes longer to process information, I am very aware of giving him at least 45 seconds to respond in any way. Thereafter, I may make a subtle movement, touch him gently, and make a comment or even a noise!

Pausing within an interaction helps us both;

It gives Nick the time to process what is happening, think about the interaction and then to respond how he sees fit.

Pausing also helps me ~ it gives me the time to reflect on my interaction with Nick and it gives me time to consider what I am going to do or say next.
It is very important to me that I allow Nick to think for himself. It is all too easy for me to jump right in there and ‘do’ everything for him BUT in the long run I am not doing him or me any favors!

Pausing helps create that ‘connection’ between us!



Declarative language v imperative language
Declarative, experience sharing communication is any communication that is meant to share your ideas, feelings or experiences.  Imperative communication is any communication that requires a specific “right” answer, or that is making a demand.

I try to use declarative experience sharing language to invite Nick to respond to me. I am giving him the opportunity to think for himself. He doesn’t have to respond but the invitation is there if he would like to!
Again, I used to give him endless instructions ~ words that required an immediate response without any thought being put into that response. We all do it automatically, Come across any toddler and we say, “What’s your name?”, “how old are you?”  This style of language really didn’t work for Nick!
An example of using declarative communication…… Its lunch time and Nick is a bit unfocused and he is more interested in sitting on the sofa flipping through the pages of a book!
However, if I make a comment, “Oh, I am so hungry, I would love a piece of toast!”
And I then wait….
I can see that Nick is ticking over the information in his brain, and invariably he will then jump up and go to collect the bread.

Using declarative language helps create that connection between us!



I have chosen three short video clips to show you. They are roughly around one minute each.  I am not a film maker so the quality is not that great. I have also made a point of choosing three different activities to show that the changes I have made in my communication style can be used at all times, no matter what we are doing.


Throughout this game you can see that we each have a role. I am going to be placing an item onto the plate and Nick is also going to be placing an item onto his plate …. And we are going to be doing this using a simultaneous parallel pattern! However, as we are about to place our items, I throw Nick a bit of a curve ball. I start waving my piece around and it throws him out. This is a good example of how I waited for him to get back on track! 
video




In this clip, we are walking together to collect everything that is needed for lunch. You will see Nick race off ahead of me… I stopped my action and waited for him to come back to me. When he does come back to me with the bowl, I then make a point of retracing his steps but this time we do it together. 
video



I like this clip because it shows Nick coordinating his actions with mine. We have a nice regulatory pattern going on.  Nick is referencing my face and body language for information.
video





What I have just shown you are some simple examples!

So, just to recap…….To help encourage meaningful interaction I take into account many things.  

 I SLOW DOWN!
 I give longer processing time
 I pause frequently
 I use less language
 I use more non verbal communication
 I use declarative comments to invite Nick to respond
In any interaction I do with Nick, I take care to ensure that he has a role!
 In any interaction with Nick I take care to ensure that he has the opportunity to think for himself!

I have found that by making these changes and being mindful about my communication with Nick has made a huge difference to our relationship. 



I would like to end this presentation by reading to you that paragraph again!  I copied it from the handout of an autism workshop that I recently attended.

“Children with ASD found to experience particular difficulty with: gaze shifts, shared positive affect, joint attention, using a range of communication means and functions, use of gestures/non-verbal’s, reciprocity, social affective signaling and imitation.”

Do you know, I listened to over 7 hours of presentations at the autism workshop and not once in any of those presentations was there any mention of addressing these core deficits in a meaningful, experience sharing and dynamic way! This one paragraph was it!!  (*I do recall waffling on quite a bit here!!!!) Although this fact was disappointing, I feel comfortable in the knowledge that I am addressing these issues with my son.