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, glass of wine cup of tea in hand, moaning at the whiny dogs! Bring your walking shoes just in case the weather works in our favour!

My Reality ~ Holidays

We have just arrived back home after a weekend away. Due to a coffee stop on route, I found myself driving the remainder of the journey ALONE! This is practically unheard of... me alone? I turned on the radio and drove. For the life of me I don't know how I got home! My mind started wandering and I started thinking about my situation and then the REALITY of my situation. My mind went through a whole range of emotions. Sadness, despair, anger, extreme anger, acceptance, a bit more anger, a few swear words! Of course I realise why I feel this way and I also know that it will pass!

I came to the conclusion that in order to work my way through my emotions is to write about 'My Reality' So here I am.... blogging about some of the crap that I go through! I am not sure how many 'My Reality' posts I will write and my language may deteriorate somewhat, but..... here goes....

Holidays

At the beginning of each long holiday I tell myself, "I can get through this". I remind myself of how far I have come. I have moved on from those early days of feeling very low, despondent and downright depressed at having my child with me 24/7.... to embracing the fact that school holidays are a perfect opportunity to slow down, chill and just go with the flow! Holidays have become much easier with time.

Hah!

I have just got through two whole weeks of rolling whatever way the wind blows. I am talking autism, stimming, the constant tapping on my shoulder, code undies, the repetitive mind blowing dull day-to-day routine of feeding, bathing, going out for coffee, grocery shopping... and any other activity I can think of that helps to keep us occupied! I try to keep off facebook so that I am not constantly reminded of all the lovely things that *normal* families are doing with their days. That's right, I am not part of a normal family.... I am part of a very dysfunctional family unit! Oh sure, a lot of people will say that each family is dysfunctional in their own way, however, throw a special needs child into the mix and then you will REALLY know what I mean by dysfunctional!

Can you feel it people? Can you feel my anger coming through? Shit, I so want to be normal and I want my child to be autism free. I want to have a regular life without all this extra stuff.... 

It's okay, this is just me after spending two solid weeks with my child without much of a break. The tension starts building and my shoulders become stiff. I know that I am very irritable and that it wouldn't take much for me to lose the plot! I can hear my inner goddess bitch saying "don't give me any grief, because my comeback won't be pleasant!" This irritability is only a short term thing. As soon as I have a break and/or my life goes back to normal (Nick at school five mornings a week ~ me free for 5 mornings a week!) then I become my old self again! 

I need my space. I need my time alone. I need time out from 'My Reality'. 

Thankfully, I have a big treat in order to keep me on track. A reward to keep my temper in check. A reminder that I am soon going to have some time out.

As I was nearing home, the following song came on the radio. I pumped up the volume and cast adrift my negative thoughts.....

The only words I remember are.... "what doesn't kill you makes you stronger". Those words made me feel a little brighter! :)