April ~ Day Twenty Four

I found another board game that looked like it had more potential than Junior Scrabble. Rather than write up a new framework, I decided to use the same one as yesterday's post...  Junior Scrabble.

My goal for this engagement is to connect with Nick and share the enjoyment and experience of playing a game together.


Our board game of choice:

Catch me if you can.


Roles:

I take a turn / Nick takes a turn.


Activity limits.... and rough plan:

This game calls for four counters each. The objective of the game is to (throw) push the dice, read the number and then move the correct counter. This is too much for Nick, therefore we will only have one counter each and the first person to get their counter 'home' is the winner.

Having one counter each makes the game/activity shorter and more manageable for Nick.

No distractions. Game to continue until first person is home.


Communication:

Lots of declarative comments. Scaffold by helping Nick to count the spaces he needs to move.... keep it simple, 'one, two, three...'. Pause a lot to give Nick the opportunity to attempt the counting. Use noises (for example; a little cough) if he forgets that's it my turn. Be expressive about each move, emphasizing my enjoyment of the game!


What happened:

I placed the game on the table and made a comment along the lines of... 'I found this game that looks like fun'.  Nick walked past the table on the way to his fav sofa. He looked at the game, looked at me and then moved away. No big deal, I thought, I will just carry on with what I am doing.... (making a cup of tea).

A short while later, Nick went to the table and took the game out of its box. Woohoo, of course I was dancing with delight that he made the first move. We played the game for a few moves each before Nick decided he had had enough. I helped scaffold his last few moves to ensure that we ended the game on a positive note.

My Reality - How do I cope?

Isn't it great being able to connect with other mums and dads who also have kids/teens/adults with special needs? With the click of a button it is possible to offer support, receive support, commiserate, whinge, rave and have a wonderful belly laugh.

I follow the blog of a lovely Irish lass called Looking for Blue Sky and she has posted the following for a blog carnival.... How do I cope?. I like the subject and it fits in with my latest theme 'My Reality'.

The following is a list of questions given by Rebecca, the creator of the blog carnival. You can find her at Here Come the Girls. By the way.... this carnival is for any parent and/or any situation, not just special needs.

1. What is it about your life which has made someone ask how do you cope?

I have a 13 year old son. He is autistic, non verbal, has motor planning issues and high anxiety. If I may be so blunt... this kid of mine is going to be dependent on me for the rest of my life! As for what happens when I have gone? Who knows!

2. What is the best thing about the situation?

To look on the bright side (pun intended!), the situation that I find myself in has forced me to become less of a perfectionist. I now take life very slowly and I have learned to concentrate on all the positives and celebrate every little success. My child has enriched my life!

3. What is the hardest thing?

The dull monotony of living with autism every day! We also love travelling and in order to follow our dreams we have to leave our son at home. This is exceptionally hard, however, our son is happiest at home!

4. What gets you through the day?

A cappuccino! :)

Seriously, I do need my own space and I love my spare four hours every weekday morning. I use this time to see friends, blob around the house, play with the dog and do household chores.

5. What would you change if you could?

As much as I adore my son, I really do wish that he wasn't autistic. I can't change that fact, therefore I blog to create autism awareness. I hope to help change public perception of children and adults with disabilties.

6. What piece of advice would you give to someone finding themselves in your situation?

Slow down. Take the time to really connect with your child. The relationship that you have with him/her is what truly matters.

Written in support of the blog carnival Walk a Mile in my Shoes

 This picture was taken in the Dean's garden at Winchester Cathedral.

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! :)

Cutting Edge..... yeah right!!!!!

Not so long ago I saw an advertisement for a course on autism, not just a plain old course BUT one that was 'Cutting Edge'. I debated about attending!  Let's face it, my child is 12 years old and I have been to a few conferences.... BUT this one was 'Cutting Edge'!! 

If I did go, it would mean leaving my family for two nights. It would mean taking a plane. I would have to hire a car and drive around Johannesburg (which in itself can be a bit scary!). I would be all by myself. Hang on a minute, I could meet my friend Sarn for lunch.... at SANDTON!! I could stay with my lovely friend Brenda! I could also meet up with two Durban friends at the course.  The more I thought about it, the more I thought how can I miss the opportunity to attend a course on autism, especially when I could also have some fun and perhaps do a little bit of shopping!

Therefore, I duly left my family to sort themselves out! Did they manage? I don't know ~ I didn't bother asking!! :)

Anyway, back to the course.....

Our day was jampacked full of speakers, covering a variety of topics. I am not going to give you a blow by blow account of it all, otherwise this will turn into an extremely long post! Excluding breaks, we sat for just over seven hours *listening*, shuffling in chairs, sneaking out for a quick loo break, whispering to the neighbours, sucking on mints, rummaging through the handouts, checking out who was wearing what!

To be honest, I have to say that the course was NOT cutting edge and although the speakers seem like really nice people, their lectures were just a bit out of date!  I can't really expand on that, otherwise I am sure to be shot down in flames!!!! 

However, I do have one thing to comment on! How could I not!

I was quite excited when the following was mentioned by one of the speakers (in fact, I pinched it from the handout!). 

“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-verbals, reciprocity, social affective signaling and imitation.”

How fantastic, we were going to hear about new 'Cutting Edge' ideas on how to help children with everything mentioned in that one paragraph! I sat eagerly on the edge of my chair......

and waited

and waited

Not once in those seven hours was anything mentioned that related to that one paragraph (or what I perceived that paragraph to mean!). Sure, child development was discussed, BUT each and every therapy spoken about, looked at the child from an academic point of view and what needed to be done to make the child successful at school. 

People, I think the point is being missed here! We need to go back further and further to the beginning stages of child development. Don't we want our kids to be dynamic thinkers? Don't we want to give them the opportunities to communicate in an experience sharing way? Don't we want to have a *real* connection with our children? I know I do.............. and if that means accepting that my child has missed out on all of those important steps when he was a wee tot, well then, so be it..... I am going to go right back and address those developmental milestones that he didn't pass!  After all I have nothing to lose and everything to gain!

As for the autism course, I don't think I will be attending another one in a hurry, unless of course I need to find an excuse to visit lovely friends and go shopping!!

Oh, by the way.... the only thing I bought was a small parachute for Kids First!! :)

~*~