What did you just say?

We use a lot of repetitive language in our family. Sometimes, I feel as if we are on that ever revolving hamster wheel, endlessly repeating the same words or phrase......

We also use a lot of non verbal language. It may be an expressive shrug of the shoulders, the raising of eyebrows or the sign for "I am feeling cross". It might be the twinkle in my eye that tells Nick that I am about to chase him. It could be the way in which he adjusts his body to engage with me. Perhaps it is his teeth tapping together, to ask, "Where is dad?"  It is wonderful to be able to communicate in this way, but oh boy do we get some looks when out in public, especially when the same movement/sign is used again and again.

Nick makes the sign for “iPad”

I shake my head “no”

Nick makes the sign for “iPad”

I shake my head for “no”

5 minutes later

Nick makes the sign for “iPad”

I shake my head for “no”

I thought I would share some of our standard family comments, the ones that make us chuckle or say “oh my word, why does he keep doing that?”

“Don't touch your bum and then your lip with your finger, it looks weird!”

 (Not so cool when out in public!)

“Yes, you do need to wash your hands!”

(How many times do I have to say this?)

Please stop flapping my underarm.

 (I have to chuckle, otherwise I would cry with despair at growing old!)

The meaning of his wave depends on the situation; it could mean hello or goodbye, although at times it can also mean #@#@ off

 (This one gives me a good chuckle!)

“I am driving; keep your hands to yourself”

 (He will insist on touching my hand, then the gear stick, then my hand... one of these days I am going to follow through with my threat to put him in the back seat!)

“You have already had two biscuits!”

(Typical kid thing pushing his luck)

“Hey Nick, how ya doing, I haven't had a hug all day”

(Thomas)

“Oh boy he has got hold of the TV remote again”

(Shake head)

“Stop stimming on the TV”

 (Chuckling at his chuckles)

“Stop pulling on my face”

 (Thomas) 

“Ahhhhhh, family hug”

 (Ahhhh, sweet)

“Psssssssst, Nick.... stop scratching your *_____* in public”

 (Puberty is such fun, yeah right!!)

“Stop picking your nails”

(Sigh!)

“Dad is at work”

“Dad is at work”

“Dad is at work”

“Yes, we are going to fetch Thomas from school”

“We are going to ­­­­­______’s house then school”

“Chill Nick, it is only a fly!”

“The toilet door is ALREADY closed”

(As Nick heads back to check the door for the second time!)

My response to comments made by J. Public.

“Really, honey on his lips will make him talk?”

“You wouldn't be able to do it?”

(What makes you think that I can?)

“Thank you; sometimes I don't know how I do it either!”

“Yes, he continues to make progress”

“He is fine, thank you for asking”

“It's ok, he is just saying hello”

(But then again, he could be saying _____*fill in the blank*)

“Really, I am not special, really....”

“Don't worry, it's ok, you weren't to know that when the trolley went into the back of your foot, that my child has special needs!”

“Nope, he doesn't talk”

(Although I have heard that honey on his lips might to the trick!)

  

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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!

Sharing is caring!

Being a special needs mum can be a lonely business at times! I recall when Nick was a wee tot and I didn't know ANYONE who had a child with special needs. Also *back then*, our internet options were limited, support groups seemed to be few and far between. It was a very isolating experience, made even tougher due to the utter misery of trying to come to terms with my child's disability. How my marriage survived I don't know! I vividly remember having a glass of wine in my hand and throwing it very hard towards my husband and it smashing on the wall behind him (of course I wasn't really aiming for him!!!). It is easy to laugh now! :)


Today, connecting with other parents is a totally different experience. Keeping in close contact with family members all over the world has changed my life.  Gone are the days when I used to write to my Mum and then wait a month before I got a letter in return! Want the long distance cousins to grow up together?  Connect them through facebook and YouTube (with careful supervision of course!). 


For those of us who want to create awareness of our children with special needs, the internet makes it incredibly easy. Whenever I write a new post, I have in mind the *young mothers*. The mothers who haven't been on this journey for very long. I want them to be aware that life gets better! YES, there is still the odd blue day, however, post a simple sentence on facebook and have your day brightened by the support that is shown. OK, the comments may go a bit off topic and turn into compliments *blush* BUT it is incredibly uplifting to get that support. Oh, how I wish I had this ten years ago!

Mind you, I have been wondering if perhaps, it is all a bit narcissistic sharing my story and posting comments on the internet! "Narcissistic personality disorder is a mental disorder in which people have an inflated sense of their own importance and a deep need for admiration". OK, I am fairly sure that I don't have an inflated sense of my own importance! As for the need for admiration, well sure, it is nice to have people make nice comments! On behalf of all parents of children and adults with special needs, I need to say that there are times we need to call out for positive reinforcement and it helps tremendously to know that we have friends out there who understand what we are going through. Does this make me narcissistic, I hope not!


My facebook post today.......
The joys of having a special needs child??? I can't think of any right now! If you have any positive uplifting *joys* please feel free to post here!! :)




Tobys expressions of joy, love, and enthusiasm, are 100% untainted by any other feeling.


I've learnt to be patient? ... well more patient than I would have been :) and maybe not to have expectations - that way I can be thrilled with any / all accomplishments...


it can be a double edged sword but these kids are genuine when expressing their thoughts and emotions....we just have to get it all out of them, and they have a very funny sense of humour, hope you start to feel uplifted sooner rather than later


The friends you make.....?


And the people who love them!!


The happy times are so much sweeter.


I get to hear, mum I love you so much.....50 times a day :)


The innocence. . . .


 I know the lines from Finding Nemo off by heart, and when I say a line to Shaurav I always get the bestest smile... even in the middle of a tantrum!


 ‎... they say it (what ever it may be) builds character - OMW & what a character u are! Hang in there Di ♥


Know how you feel - is all I can offer Di...onward we go...oh and then we do have the little breakthroughs...the future is open ended...strength.


 Leaky duck session?


 Those rare moments where you see a miracle of development happen


 BIG hugs - am also having one of those days - bedtime needs to come quickly! Tomorrow is a new day!!!!


Di, I think I'm feeling as bleak as you! Eish!! Not sure if it's this house or the weather!


You've been able to teach us all so much! X


 Smile, watch a comedy...it's this dreary weather. x


Di, your are an inspiration to so many. Put today behind you and start a fresh tomorrow, if anyone can get through a tough day its you!


Hang on there. I'm thinking of you. Been there, done that and I know the times will come when the circle will come around again. It does. It's natural. Even we - the parents of kids of special needs are only HUMAN!


keep your chin up Di xxx your an awesome person never forget that xx


Children with autism don't pretend or lie, so you always know you're getting the real deal...that's something special and very hard to find in neurotypical people.


Meet other autism mums


 learn loads of truths about the world that 'ordinary' people just don't know


 Don't worry Di, u are a awesome mum and person. Just pray to GOD he will guide us and show us the way...when times are hard....


A special needs person teaches you to be humble


Those times when your kid does something you really thought he might never be able to do. Like just hanging out at a restaurant. Or joyously shopping with you. Or doing school work. We never take those things for granted. Hugs. 


All of the above............. and let's face life is and will never be boring :) (hugs)


Hope u feeling better xxx


 The joy and blessing of the opportunity to be a better, more patient, more self-less, more educated, more involved, more engaged and more connected parent, with all of my children!

Perspective....I would be a very different type of person if my perspectives were not widened by my own children, and our community! Truly *special needs* has taught me ( and us) so much for ALL of our relationships. Isnt it wonderful that now, we can look at a mom and her child, anywhere, and know that there can be so many things happening behind the scenes...This makes us truly understand relationships far more then if we never had this opportunity


Life is unpredicatable, it's little pockets of happiness and moments of beauty that keep you going xox


We all have those days, and apparently parents of typical children sometimes wonder about the joy of having just regular kids too... So this kind of thought occurs to many parents. Remember the joy of feet on sand? I wonder if you would be getting as many comments and support if you didn't have a special needs child?


 http://blog.autismspeaks.org/2011/11/24/be-aware-for-parents


They teach you more about you than you could ever teach them about anything. Look how much you have learnt....all those pathways of yours that would have otherwise been blocked...You are now very wise and an inspiration to everyone especially those that are only starting the journey.

Thank you so much, I appreciate every comment, 

you have lifted me up when I was down!

Tomorrow is another day!

xx

P.S. My dear friend who is going to be moving to greener pastures, I am going to miss you BIG time ~ we have been through so much together! Ah well, at least we can keep in touch via the internet!! AND, I am coming to visit! Lots of love xx

Rod Smith and the Mercury Newspaper!

I am not a great one for keeping up with the daily newspaper, however, when I do read it, I always go straight to the column written by Rod Smith. I enjoy reading his words of wisdom and also get a kick out of some of the stories that are shared!


Rod Smith is a family therapist who lives in the USA. He used to live in Durban; and in fact he is my friend's cousin's wife's uncle! ~ sorry Sandi, I just couldn't resist adding your comment in! :)


My mum (who is visiting from New Zealand) passed me Monday's Mercury and said "read this, he talks a lot of sense!" (Out of interest, I left home at the age of 17!). She was right, it does make a lot of sense ~ but, it got me thinking! Sure, I can relate with all that Mr Smith said ~ but, what happens when you have a special needs child? On the spur of the moment I sent him a quick email, without telling anyone in my family! I did think to myself  "I wonder if he will write back?" and then promptly forgot all about it!


Today, late afternoon, I was pottering around in the kitchen, sorting out Nick and organising supper.  My mother comes into the kitchen waving the newspaper in her hand......... she says, "Oy, this sounds like you!!"


Well, would you believe it, the dear man had published an edited version of my letter and replied! Oh my word, that man put a big lump in my throat and some tears in my eyes. Thank you so much Mr Rod Smith for your meaningful words, they are truly appreciated.


Here is Mr Smith's original post....


The Mercury
Monday
August 29, 2011


You and Me
by Rod Smith


It's a frequent theme in my office and in letters: "He'll always be my baby" or  "Once a mother, always a mother," and, "A mother's work is never done."  This is usually sighed rather than said. It usually precedes a story of a successful man or woman who seldom visits or contacts his or her mother.
These sentiments deserve challenge. There is no question that once you are someone's mother that is a fact - but mothering does end.
I'd suggest the healthier the mother, the earlier in her child's life, perhaps beginning around 16 and culminating at around 22, she plans to have worked herself out of a job.
It's replaced, and the transition is of course gradual, with becoming a respectful friend of one whom she has successfully mothered.
I know this is an unpopular thought.  I know so many women are defined by their role as mother. I know I am challenging something primal.
But, successful mothering ends.
Healthy adult men and women want mothers to be friends, first. They don't want an adult who needs to be a mother in order to exist.
If the sighs cease and the lamenting ends perhaps adult sons and daughters will find staying in touch a whole lot more rewarding and meaningful.


Rod Smith is a family therapist who lives in the US. E-mail questions to Rod@DifficultRelationships.com

~*~

Here is my email to Mr Smith.....

Dear Mr Smith

I read with interest your article in the Mercury Newspaper, dated August 29, 2011. You wrote about mothers and stated that successful mothering does end.  I fully support all that you said and I feel that I am doing a great job with my 15 year old son. Don’t get me wrong, I adore my son, however, I am beginning to let go. I am excited about his future and the role that I play in his becoming an independent young man, who will one day in the near future leave us to spread his wings.

However, Mr Smith, I have a little problem! I also have a 12 year old son with severe autism. I also feel that I am doing a great job with him; however, this young man will not be spreading his wings. I am worried about his future and I am not sure that my mothering will end. We don’t have the facilities in South Africa to accommodate my son. I really don’t think it is going to be possible to work myself out of this job.

Do you have any advice for me?

Best wishes

Di Maitland

Durban

South Africa

~*~

Here is Mr Smith's column in today's Mercury newspaper!

The Mercury

Wednesday

August 31, 2011

You and Me

by Rod Smith

A READER 
writes:


"You wrote that successful mothering does end.  I feel that I am doing a great job with my 15-year old son.  I adore my son, however, I am beginning to 'let go'.  I am excited about his future and the role that I play in his becoming an independent young man who will leave us to spread his wings.
However, I also have a younger son with severe autism. I also feel that I am doing a great job with him but this young man will not be spreading his wings.  I am worried about his future and I am not sure that my mothering will end.  We don't have the facilities in South Africa to accommodate my son.  I really don't think it is going to be possible to work myself out of this job.  Do you have any advice for me?"


Your letter moved me deeply.  It shows once again that there are always exceptions to general measures of emotional and family wellness.  Your letter also reveals the diversity and the beauty seen in families.
As your younger son grows up, and as you develop the support and community you need for your own support, you will all train each other and strengthen each other for the difficult and beautiful road ahead.

~*~