When the Noise Stopped

Just recently I have noticed that I am once again able to participate in our church band.

How did this happen?

My son stopped having melt downs and has learnt the art of contentment.

It reminds me of when I lived on the highway and for most of my life I never really noticed the traffic noise or the trains out the back. Growing up living on the highway was a normal part of life and I really didn’t know any better.

Many years later a by- pass was developed which meant that all of the traffic no longer went past mum’s house. The first week of it being opened I noticed something really strange; I noticed the birds singing and I could hear neighbours conversations.

What struck me about all of this, was how I didn’t  notice the  noise of the traffic and how clearly it had affected my ability to hear other things. I liken this illustration to how I didn’t realise the noise of VCFS or disability was affecting my ability to participate in the church band among other things.

This is a stunning revelation and shows me that I am not one who can multi task and nor should I. I’m a slow and steady person and that’s why I’m going to win the race. If I can’t do everything than that’s okay.

I will learn from this and will never feel the guilt of not doing enough again…..seriously why do we burden ourselves with false guilt??? From now on I am deeming it inappropriate guilt because we are human beings for goodness sake!! Enjoy being human OKAY!!!!

Sorry, just got a bit preachy then.

So I’ve taken a moment of reflection and now I can’t wait to enjoy the next chapter of my life.

 

 

Advertisements

A Shift In My Thinking

Just recently I have had a shift in my thinking when it comes to my son who is now 9; I think of him as a human being.

I know that might sound really strange, however bear with me and I shall explain.

When my Son was 18 months old he was diagnosed with VCFS and when he was about 5 he was diagnosed with having a moderate intellectual disability. When we were met with these diagnoses it was naturally heart breaking and yes of course I still saw him as a human being. It’s when you live through the reality that is presented before you it is only natural to be influenced by such things and for your mind to just cope with the situation.

Many decisions that we have made on his behalf have been influenced by his challenges and rightfully so. Many of the dreams that we had for him were either squashed or adjusted accordingly.

Fast forward to now and so many things have changed and we need to catch up.

Where did it start?

Back in June there was an opportunity for my son to be prayed for by Chris Gore.

Who’s he?

He’s some dude who has a healing ministry and he came to Shellharbour and invited all those with kids who have special needs to be prayed for. If this was a year earlier I would have said bugger off but somehow I was open so on the Saturday night an hour before the night session my son and a heap of other kids got some prayer. It was really special. The ministry team were polite and asked the kids permission to pray for them. It was a special time.

I did notice some little changes in him and have been rejoicing and thanking God for all the milestones. What having prayer meant for me, was my eyes for Zach’s future was immediately about hope  instead of  scary and uncertain.

So life went on and in the last term at school he started to struggle and was emotional everyday. It has been troubling and the teachers have been concerned for him as previously he was a happy child. Just prior to all this emotional stuff at school I had a dream that he was at a beach on a surf board. I witnessed him being pummelled by the waves and at first I freaked out but when I looked at him I could see that he was enjoying himself. I knew by this dream that he was going to be okay.

Last month we had a  Worship Mob at our church. During that time my son began to cry at a particular song (which is not unusual at all). I nearly did my normal “roll my internal eyes and get annoyed” however, I looked at him and instead of seeing him as a disabled child having a melt down I saw him as a human being touched by God through the music.

It was an epiphany!!!

I took him to the foyer and let him have a cry in my arms. I told him it’s okay to be sad and just let the tears out as he said that he didn’t want the sad feelings. After some time he asked me why his friends don’t like him any more and then there was another bout of sobbing.  After he had calmed down he then became really happy and I think it was due to him being validated and not told to calm down.

Ever since that moment there has been a shift in my thinking. It reminded me of those optical illusion pictures that has two images. For years I have been seeing the one image but now I see the other.

optical

Just recently we took him to a psychologist and I was greatly encouraged by her words. she encouraged us to get him retested, get him into drama and provide more challenges for him. This holiday he has been going to his usual out of school program and he has been hanging out with mainstream kids and has no emotional problems.

I am starting to see his future in a different light, my eyes are looking up and I think he’s going to be okay. It’s time to focus on the other image that is in the picture.

 

The 22Q Adventure

When my son was 18 months old we were introduced to VCFS aka 22Q.dil.11. Now that was a big shock!!!! He was born with a soft cleft palate that was repaired at 6 months and a heart murmur was detected. Never would I have thought that there would be anything else to come up and bite us in the bum. Ouch!!! What the heck is VCFS????? 

He is now eight and life had been an unexpected adventure. These are some of the highlights

Orr look at him receiving an award when he was in kindergarten

262

 

Oh look, this is a painting that I did in response to being thrust into the VCFS journey 

zac

Awww look at him hugging the washing machine.

225

Such a sweet photo of my son and his Grandma behind him….notice how he is reaching his hand behind him so that he can have Grandma hold his hand.

219

I just love this picture

919

Us in the paper creating awareness

264

Looking quite dashing in his specs

1243

Here he is picking up all of the cigarette butts from the ground. It became an obsession.

Getting rather excited with the fireworks set up!!!

Cheeky face

Too exciting…a train trip!!!!

Arh, the happiness……army clothes, a toy grenade and a trip on the elevator.

Life is good for a child with Q22

I have written a lot about VCFS and if you would like to read more of our journey here is the link 

 

Let’s Celebrate Life

I just stumbled upon this delightful video which celebrates Happy World Down Syndrome Day

I really don’t think that I could write too many words that express how awesome this is, except how good is it to see people happy and dancing. When you see a happy person having a good time you don’t really see the disability, you see joy and possibilities.

To all of my friends who are effected by disability, this is for you 🙂

Now lets dance!!!!

 

A Word in Season

Yesterday my stat’s went a little crazy as I decided to share this post that I wrote about two years ago. When I wrote it, I was in a very fragile place and had enough of people telling me how my child’s antics were just normal child behaviour.

Since penning my thoughts way back when, I haven’t really experienced this frustration for some time. Is it because people don’t say it to me as frequently, as the older he gets one can clearly see that his behaviour is nothing like a child his age? Is it because these days I’m a lot more calm about my situation? Who knows, I think the antidepressants are working….Oh, and seeing a psychologist too was pretty unreal…and I haven’t yelled at a man it public for a year now and the eF word has seemed to have made and exit from my general thoughts…..hi fives all round friends!!

Yesterday I was reminded of this topic as I was part of a discussion board with other’s who are effected by VCFS. (I can’t share the link as its private). On the thread there were a number of people who kept on insisting that the vcfs antics of one of the children who was posted about was normal behaviour for all children. 

I didn’t feel the rage of yester year, however frustration was mounting when the mum who wrote the original post clearly articulated her knowledge of the  differences between what a typical child does to one who has special needs and then seemed to go unheard.

This made me realise that my frustrations from a few years back, are being felt strongly today by many of those who are in my situation. As a result I decided to share my post called “But all children do that…..do they really???” and the response has been an awakening experience.

For those out there who could relate to the words I had expressed, it is a word in season just for you. It is my gift as one who goes through stuff and writes about them. Not all things get heard straight away but when the season is right the ears will be there to hear.

So to you my fellow VCFS peeps (and others who could relate to the post), keep being awesome and wonderful and thank you for receiving my written words. Lets not be put off by those who don’t seem to have the ears to hear about our lives. I hope your days are full of understanding and strategies to keep you sane.

All the best my lovelies 🙂

Glasses

My son has a great teacher called Ally Campbell. 

In his eight years of life he has never, until recently had a successful eye test. Admittedly this has made me feel guilty, as I knew there could be a chance of him having eye problems given he has VCFS.

For the past couple of years life has been very overwhelming and unfortunately a quick trip to the optometrist is not that simple for us. This is where Zachy’s teacher comes into the picture and I am so grateful for her going the extra mile for our family.

Mrs Campbell, found an appropriate optometrist, made the appointment, created a social story, viewed YouTube footage and then came with us to the appointment. As a result my Son was relaxed and even excited to have his eyes tested and we found out that indeed, he needed glasses.

Since he’s been wearing them a whole new world has opened up to him, he looks at people’s faces and is engaging in more conversation, he’s excited when he see’s others wearing glasses, his world has opened up to him and I am so happy for him.

So all thanks to his awesome teacher for making this happen….thank you thank you thank you.

1267 1224 1243

What a Day

Today I decided to take the morning easy, as for the past three days were a bit strenuous and I needed a bit of a rest. I watered my garden, did some reading and cooked a gourmet breakfast courtesy of the Community Garden.

However my happy feelings turned to anxiety in the lead up to my job search network appointment. Then it was tears…boo hooo.

Feelings of being overwhelmed just flooded over me, or dumped on me. I cried because my son needs his eyes checked, he needs another sleep study, I can’t get formal respite, he needs to go the cleft palate clinic, he has a limited diet, he’s not disabled enough for me to get carers payment, blah blah blah blah.

When I went in for my appointment I burst into tears. The young lady was very good and encouraged me to get a Doctors certificate and sent me up the Centerlink to chat with the case coordination peeps! By then I was feeling good again as I was able to obtain more contacts that could possibly help me.

I then went and had coffee and the girl at Gloria Jeans asked me how my day was and I explained my day to her. There was a new chap working there and he just happened to work for a disability service provider and willingly gave me yet another contact for me. I then went to the bank and the lady told me that if I opened a savings account, the bank will donate $10 to start it off.

Lets just say the day got better and better and I’m feeling the hope again. It’s like God was saying “It’s all going to be okay”.

And I shall Swan About!!!

I have come to the conclusion FINALLY, that being a mum is a full-time job and having a child with special needs is overtime!!!

I am not being a victim here by the way, I am just  finally acknowledging something that should have been acknowledged long ago. My life is full on and I can’t do everything therefore if swanning about in a kaftan in my backyard like some queen bee makes me feel happy then I’m going to do it guilt free!!

From a worldly point of view I am unemployed but in reality that’s just not true. Worldly expectations I think, can be very damaging if you allow the pressure of life to way you down.

Worldly expectations: YOU SUCK

  • You suck the life out of living
  • You suck the dreams out of people
  • you suck energy out of the strongest
  • you suck the creativity out of the artist
  • you just suck you meanie!!

Who do you think you are? I am living the best life I can and my expectations come from God anyway, which are soooooo  much easier, so worldly standards and point of view; let me describe what I am doing right now,

  • I am giving you the bird when I decide to swan about
  • I am giving you the bird when I decide to make a teepee in the garden
  • I am giving you the bird when I allow my child with a disability play with his ipad for as long as he wants to
  • I am giving you the bird when I don’t care about your stupid silly rules
  • I am giving you the bird when I decide to do what matters instead of living up to the unobtainable.

It may sound as though I am angry but I’m not. I am just deciding to do what really matters and I will now choose to put my love and energies into the most important people in my life; my family. Those are the people who need me to be strong, energised and happy, therefore I shall swan about feeling sexy and when I am happy my family will be happy.

That is all. Have a good day my friends.

The Frisbee Saga

See this humble little frisbee, It’s been on an adventure and this is its story.

This frisbee came to our house not via going to Hungry Jacks as we never go there but nevertheless we ended up with this propaganda marketing tool in our house. My son who has fixations on things didn’t even care about this frisbee until just recently. He began to throw it in his bedroom instead of going to sleep.

That’s annoying, especially when he loses it somewhere in the mess of his room!!!!

Arrrrhhhhh

So there was consequences.

On Tuesday it was garden day and my son couldn’t wait to take his frisbee down to the garden and  as we were about to leave he decides to have a throw of it……..in his bedroom!

Of course there was consequences.

We could not find it anywhere, no where….I COULD NOT FIND IT!!!!!!!!

I looked, I prayed, I looked and desperately tried not to get frustrated as my son alongside me was. I looked, I prayed, I searched high, I searched low. Nowhere could I find this  little frisbee. In the end I gave him a lid of a container and said “that will have to do”. Before we left I decided to brush my teeth and as I glanced around I saw that the frisbee was positioned behind a painting that I had leaning against the hallway wall.

“Yeah” said I an hour later “let’s go to the garden” and as we left it started to rain %$^%^%!!

Nevertheless we persevered to our destination with an umbrella in tow.

So my son had a jolly good time down at the garden throwing it everywhere, at someone’s head….arrrrhhhhhhh!!!! DON’T DO THAT!! On top of the portable pergola, on garden beds NOT THERE EITHER. Nevertheless, he had a very enjoyable day and so did I.

Towards the end of the day a few of us helped Martie (one of the local gardeners) take a whole bunch of seedlings to her house so that she could look after them. My son and his frisbee came too. As we were in Marties backyard My son begins to throw his frisbee around and it landed over the fence into a neighbours back yard. Darren then jumped over to retrieve it and in the process nearly gave poor Martie a heart attack “Get your arse out of that back yard NOW!! There is a vicious dog that lives there” Darren survived and so did the frisbee!!

The next day the frisbee went along to Skoolzout (School holiday activities) as it was Wednesday  and Wednesday is news day apparently   the fribee was to be the subject of his news. At least by now he wasn’t throwing the frisbee inside the house and good for him, he held onto it until we got to Skoolzout.

When I went to pick him up in the arvo, the frisbee saga had continued. First they said it landed on the roof, which they were able to retrieve only then for it to land a few moments later on the big roof that is acts as a  shelter.

Oh dear!!!

They could not get it down and even one of the guys went up the Hungry Jacks to see if they could get a new one but there wasn’t any. So the frisbee had to stay on the big roof overnight until they could access a huge ladder.

So on Thursday afternoon when we went to pick him up he has his little frisbee

The end

I hope!!!!

But I don’t want a Monopoly on Pain

Quite a number of years ago I was part of a writer’s  group held at a lady’s house who had a passion for people to pen their memoirs. Every week it would cost $11 and we would sit around a table with yummy snacks and commence with our writing exercises  This was such a great time in my life as I was exploring another creative expression that I could add to my artistic repertoire.

I attended this group for a number of years when after some time, one of the other writers seemed to want to get out her knives an attack me every week. It came to a head one week as I was reading out a piece of my work, when she went on the war path claiming that she felt sorry for me because I was too happy!!! She just kept pouring out the wrath with a condescending attitude that left me defending my own painful experiences in life until I burst into tears and said “Why are you picking on me? Your not the only person who has experienced pain in their life???”

This woman was suffering from the grief of losing her mother to Alzheimer’s disease and couldn’t seem to see past her own pain. It had tainted her view on everything that seemed to give her permission to attack anyone who had joy in their life.

Why am I thinking of this woman now after all this time?

I don’t want to become like her and think that I have a monopoly on pain.

Right now I am in a place where any advice that I receive just gets thrown back at the person because I’m done with advice. I say F you constantly in my head to anybody who annoys me and have been having public melt downs quite frequently. I am heavy with the grief of losing my mum and I am laden with the ongoing grief of having a child with a disability.

I am in battle with my soul as I do not want to feel sorry for myself and have been quick to embrace the life I have before me, yet I am tired of dealing with it. I have been finding myself feeling sadness that my child has not developed at the pace of his peers. That when I went to playgroup he’d have melt downs, that he hates the Wiggles, that he’d rather watch the NEWS then be entertained by Playschool.

I have been quick to be positive about my life and I’ve always been that person who will be okay no matter what happens in my life but right now I am suffocating  in pain and it seems like nobody gets it. I do not want to be overcome with bitterness like that women from my past, I don’t want to give myself permission to me rude to my fellow human kind. and go on the attack.

I want to be free and forgive. I want to have Grace with others. I want more of The Father’s love. I want more of Heaven’s plan. I want to swim in the river of life. I want to be healed.