Saturday, November 8, 2014

A Speechless Life is Not Necessarily a Quiet Life

We are coming to terms with the face that Toby has a complication which has so far rendered him to be non-verbal.  For all intents and purposes he is otherwise a completely normal 20 month old baby boy.  

He laughs, cries, blows bubbles, runs, climbs (and OMG is he ever a climber!!!)  He hugs, kisses and absolutely loves his siblings.  We aren't sure, but our GP, paed and child health specialists all believe he may be deaf BUT he reads body language perfectly, he will get Aerynns dummy or sippy cup if she is upset or in pain and he has his own way of communicating with us what he wants.

Toby's life thus far has been speechless, but he communicates well.  He can't understand what we say, but he knows when we are cross, happy, sad or even being silly.  

Toby will remove his nappy when it is wet.  If it is secured under clothes (to stop said removal LOL) he comes, grabs my hand and lays down on the ground in front of me patting his nappy indicating it is time for a change.  Sometimes he will even bring me the clean replacement as well!  Oh and if it is dirty he will pat the nappy, screw up his nose and make a grunting kind of hissing noise like he is indicating "yuck" 

Tobes lets us know when he wants a drink or something to eat.  He is often seen raiding the cupboards for bowls for cereal, plates for dinner or toast or a cup for a drink.  If he wants milk he will get the big 3 litre bottle from the fridge and struggle dragging it to wherever we might be - seriously the bottle is half his size!  if he wants something he shouldn't have he will sidle up to us with the item behind his back, and he will work his puppy dog big brown eyes, begging without words for a little treat... and more often than not we give in to him. Yes we are suckers... Ok,  I am the sucker ;)  

If he wants to look out the kitchen window to look at the chickens and ducks he will pull a chair up and come find me for help up (it's a high window so he usually grabs a stool which he can't climb all too well) whiles he is gesturing to the window he will grunt and move his mouth like he is talking to us.  All animals make the same sound to Toby...  he makes a sound similar to the ending of the word "duck"  so it's kind of like he is saying "ugh ugh ugh" and that is for ALL animals... a dog goes "ugh ugh"  the cat says "ugh ugh" and the chickens and ducks are "ugh ugh ugh ugh ugh ugh ugh!!!" 

Ask Toby for a hug verbally and there is no response.  Get his attention and open your arms wide and he is there with a huge squeeze in no time.  He knows how to blow kisses (and give sloppy loves as well)  and will play "hide and seek", wrestle and loves jumping on the trampoline with his siblings.  

If there is a big noise outside, Toby won't turn to the noise.  If it is close he will run to us for comfort.  Is he feeling the vibrations under his feet or in his body?  We just don't know...  

Toby is far from quiet.  Yes he plays silently, he has silent conversations where he moves his mouth but there is no sound, but other times he is LOUD!  He yells, laughs, cries, screams, throws things, bangs, makes all kinds of noises... he just doesn't say any words... at all... a little babbling... mumumumum and the occasional bababababababa and odd dadadadada... but our speech therapists tell us they are simply developmental noises.  

They aren't words.  They are primitive verbalisations.  We need to be realistic.  

Honestly, we don't know what the future is going to be with Toby's communication.  We don't know what he can hear, we don't know even if it is a hearing loss or something else.  He has a full audiology assessment on November 24th.  It's scary, we don't know what to expect... The experts are saying that other than severe hearing loss the other main reason for non-verbal children is autism, however our Mr T is not exhibiting any signs despite our strong family history of ASD.  Maybe he will one day come up and start talking, and we won't even know it... we will just start talking with him, then it will dawn on us that Toby spoke!  Wishful thinking??   Maybe he will require hearing aids or a cochlear implant to help him hear sound and start building a verbal form of communication. Then again maybe he will be speechless for life... But we do know that no matter what happens, he is a happy little man who communicates so well, and there are very few times that he doesn't get his point across.  And no matter what happens we just love out littlest man, he is perfect in our eyes no matter what!

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