Day 329 ~ 356
Showing posts with label family. Show all posts
Showing posts with label family. Show all posts
Our Life ~ Episode Two
Information for my family!
Nick was diagnosed with...."the neuro-developmental disorder of Autism Spectrum Disorder with co-occurring verbal, oral and motor dyspraxia. A person with dyspraxia has problems with movement, coordination, judgement, processing, memory and certain other motor related activities. Nicholas also has low muscle tone, no speech and requires assistance with motor planning, although he is able to walk unaided and move independently".
Quite a thing, hey?
He can't ride a bike or write with a pencil. Stairs are a problem and he really battles with walking on uneven surfaces. He can use a keyboard and type out quite a few words (singular). We are not sure of how many words he can read, although I have a feeling that we need to presume competence in this area!
I recently bought Nick an app for his iPad, called AbiTalk Sentence Builder. It has a library of sentences that can be constructed with a relating picture. It also has voice output. The aim is to listen to the sentence and then construct the sentence. The beauty of this app is that you can also create your own personal sentences and pictures.
The following were created by me and Nick. We chose a picture of the dog, then Nick typed the words as I called them out. I then added my voice to the sentence and each individual word. Nick had great fun helping me with the recording.
This second picture spotlights the problem Nick has with creating sentences. He can listen to the sentence and read each individual word, however, he finds it extremely difficult to follow the sequence and plan how to construct the sentence. #dyspraxia
With some guidance, Nick was able to create the sentence correctly. I called out each word, one by one, and Nick was then able to get them in the correct order.
This app really spotlights Nick's dyspraxia and it is a good reminder to be mindful of what to say when speaking to him or making comments. He will hear all that you say BUT what will stand out for him are the last words that you speak. For example; if I say to Nick, "I need one orange". By the time he goes to the fridge and finds the oranges he has lost the context of the sentence and invariably brings me two oranges!
Anyway, enough of the teen. Let me give you just a little taster of what you might see when you come to visit. Some words of warning ~ the weather at Mbona is unpredictable and it is possible to have four seasons in one day! In fact, if the weather is the pits, we will be spending the time huddled around the fire,
Our Life ~ Episode One
Information for my family
Today, as we were strolling along the beach front, Nick asked me to sing our version of 'The Wheels on the Bus'. Throughout the song we had a bit of banter about what to sing, lots of non-verbal communication with some noises and words thrown in. It went something like this.....
Nick makes the sign for baby.
I sing a verse.... The baby on the bus goes waah, waah, waah
Nick makes the sound, "oh no"
I sing a verse.... Dad on the bus goes oh no, oh no.
(I pause on occasion and wait for Nick to say, "oh no")
Nick makes the sign for cow.
I sing a verse.... The cow on the bus goes moo, moo, moo
Anyway, I am sure that you catch my drift on how this song pans out!
Nick gets so involved and we really have a beautiful interactive time together. I am fairly positive that I am the only mother at the beach front having such fun over a silly song. Go with the flow, I say!
As Nick and his Dad wander to the sand, I sit on the steps leading down to the beach and take some snapshots of them. As they return, I lie on my back and get some shots looking up. Nick thrusts out his hand to grab mine and heaves me back up onto my feet! Quite the strong lad.
It was great to see the following guys putting on a show to earn some bucks. I could have stayed there for ages listening to them..... but sadly, got dragged away by the husband and son.
This post is for my Mum and my three sisters. They are heading this way at the end of August. I thought it would be helpful to share snippets of our life so that they have some idea of what to expect. The count down is on!!
Happy 13th Birthday to my Nick xx
Nick's birthday has never been an easy time for me. He has no understanding of the significance of the day. The concept of birthday presents has no meaning to him and it has only been in the last couple of years that he will (not willingly) open one gaily wrapped parcel. Each birthday is a reminder of the severity of his disability. Each birthday is yet another sucker punch to let me know that his development is so far behind his chronological age.
I have spent the last couple of weeks going through hundreds of photos and its been quite a trip down memory lane. Anyhow, I don't want to ramble on.....
Today I choose to celebrate my little boy who has now finally become a teenager... a spotty, hairy, smelly and a long string bean of a teenager. He is gentle, amusing, interactive, loving, innocent, sweet, noisy, passive, engaged and observant. He is my Nick and I am proud to be his mum.
The week that was......
Nick loves listening to music.....
For some strange reason, he will turn on the music and then take himself off to a completely different room and listen to it from a distance. The experience is even better if he has some cushions to burrow under!
Nick loves going in the swimming pool.....
He is very comfortable with Thomas and will happily go into the deep end of the pool, although he is attached to Thomas at all times. Nick's best moments are hanging on to the side of the pool and splashing his brother, me or his Dad. He finds it hilarious when Thomas retaliates and dumps huge amounts of water over him!
Nick loves going out in the car........
This kid of mine gets cabin fever. He is always happy to go out.... and as for me, any excuse for a cappuccino!
Nick loves the checkout queue at Woolworth's; the "next customer please" announcement cracks him up every time........
We have had some strange looks, some indulgent looks and some big smiles! Nick has the most infectious giggle and frankly, I don't care what people think! Although it has to be said, the people who give big smiles, get one back... from me! :)
Nick loves distracting me while I am having a conversation.....
I think that Nick loves being stubborn.......
He will purposely dig his heels in when he knows that I request his presence. Aha, but I am too clever for him ~ I stand there and wait. A year ago, I used to have to wait 15 minutes. Today, the longest I have to wait is one minute! Generally, he bounds off that sofa within a couple of seconds. Secretly, I enjoy his stubbornness; it means that he has a mind of his own.
I know that Nick loves school.....
He finds interaction with the other children difficult, however, over the years he has become much more accepting of them in his 'space'. Five years ago Nick would become very distressed if any of the children were upset. On Friday, I was amazed to see him sitting close to a little guy who was having a bad time. I am a little embarrassed to report that Nick was chuckling, although I assume it was because he found the noise stimulating. The picture below is not related to the distress/chuckling incident!
For some strange reason, he will turn on the music and then take himself off to a completely different room and listen to it from a distance. The experience is even better if he has some cushions to burrow under!
Nick loves going in the swimming pool.....
He is very comfortable with Thomas and will happily go into the deep end of the pool, although he is attached to Thomas at all times. Nick's best moments are hanging on to the side of the pool and splashing his brother, me or his Dad. He finds it hilarious when Thomas retaliates and dumps huge amounts of water over him!
Nick loves going out in the car........
This kid of mine gets cabin fever. He is always happy to go out.... and as for me, any excuse for a cappuccino!
Nick loves the checkout queue at Woolworth's; the "next customer please" announcement cracks him up every time........
We have had some strange looks, some indulgent looks and some big smiles! Nick has the most infectious giggle and frankly, I don't care what people think! Although it has to be said, the people who give big smiles, get one back... from me! :)
Nick loves distracting me while I am having a conversation.....
patiently
he stands there waiting
reaching out his hand
to touch my arm
my face
internally he is stressed
picking at his nails
Gently
he winds his arms around mine
softly
distracting me
he pulls me along
away from the talking friend
I think that Nick loves being stubborn.......
He will purposely dig his heels in when he knows that I request his presence. Aha, but I am too clever for him ~ I stand there and wait. A year ago, I used to have to wait 15 minutes. Today, the longest I have to wait is one minute! Generally, he bounds off that sofa within a couple of seconds. Secretly, I enjoy his stubbornness; it means that he has a mind of his own.
I know that Nick loves school.....
He finds interaction with the other children difficult, however, over the years he has become much more accepting of them in his 'space'. Five years ago Nick would become very distressed if any of the children were upset. On Friday, I was amazed to see him sitting close to a little guy who was having a bad time. I am a little embarrassed to report that Nick was chuckling, although I assume it was because he found the noise stimulating. The picture below is not related to the distress/chuckling incident!
Nick loves our old/on its last legs laptop......
Sadly for him, it was beginning to drive me crazy. Think about it ~ could you listen to the same old Toy Story 30 second scene over and over and over? I lost the plot and made him pack it away into the cupboard. Before you say "mean mum", let me tell you that we set it up again this afternoon... BUT only for half an hour ~ How do you think I managed to find the time to write this post!
Nick loves his family.......
Without a doubt! :)
~*~
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