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.

 

 

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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.

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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

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

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Awww look at him hugging the washing machine.

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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.

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I just love this picture

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Us in the paper creating awareness

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Looking quite dashing in his specs

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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 

 

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.

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But He Likes Led Zeppelin!!!

We are a family who is affected by VCFS  and on most days its like an adventure where life truly is interesting and a delight. Although I have come to terms with the initial grief of having a child with a disability there are moments when it hits you in the face. Most of these moments are unexpected, for example when I asked if I could do something with his class I was refused. The reason given was because when his class gets visitors they find it hard to settle down, which I get and understand.  This made me feel extremely sad because if he was a normal child I would be invited to do reading in the class.

This is just one of many examples where his differences are pointed out to me in an obvious way and you can’t stop the grief from occurring.  The other side of the coin though, is a much more interesting version of events. When I get sad about his differences I think to myself “But he likes Led Zeppelin”.  

We were watching 60 minutes one night and Robert Plant was being interviewed. My son was enthralled by the music and asked “Can Daddy put this on my ipad?” I said “Do you like this? ” and he said “Yeah, its Rock n Roll”. I then understood why The Wiggles never cut it with him and could not have been more proud of him then in that moment.

My son has so many things going for him and I really just want to focus on the positives. I love how he has declared himself a drummer and can actually play the drums. I was amazed one day when the cicadas were singing he knew the moment when they would stop. He said to me “here comes the switch, here comes the switch” and the cicadas were silent. I love how I can test his sound memory by playing a particular colour on his xylophone and he gets the right colour every time. I love how he watches tutorials on YouTube about his apps then recites them. These are the things that I think about and choose to focus on especially when I have a down moment about VCFS.

Although he may appear that he is behind his peers, in some ways he is far ahead and that just makes my heart smile 🙂

I am Angry

I am angry when control freaks get their way

I am angry when good ties get severed because of some stupid rule

I am angry when one person can influence everyone into thinking that love, kindness and compassion is a bad thing

I am angry when I feel powerless

I am angry that there are those who think they know

I am angry that I have to explain that my normal looking child has a disability and his behaviour is not due to my bad parenting style.(just shut the f$#%  up you experts!!!)

I am angry when I am underestimated

I am angry when I see injustice

I am angry when stupid rules are put into place over basic human needs

I am angry that my mum died

I am angry that I have less family members alive today

I am angry when people don’t get it, even when my articulation has been made clear (clearly not for some arrogant, up them self, pious individuals)

I am angry when I am patronized

I am angry that I have tried my best to fit in

I am angry when I get advice that makes me feel worse than I already feel

I am angry when I am not heard

I am angry that sickness took my mum

I am angry that I always need a strategy in dealing with my son’s behaviours

I am angry when those strategies don’t work any more and I have nothing left

I am angry when breast-feeding nazi’s put guilt on those who bottle feed their baby (for goodness, sake some of us get no milk or our baby cant suck because they have a soft cleft palate)

I am angry and I need help!!!

Weekly Photo Challenge: Resloved

It is my resolve to accept help and not sabotage those who are willing to give it.

It is resolved, that I shall put the cape down and say I’m done, bring on all that there is out there for me.

I put my hands up and say I need you God and I need my village.

VCFS

Me and VCFS!

If any anyone knows me then they would know that I am a person who has been effected by VCFS. I had never heard of this genetic disorder until my son was diagnosed at 18 months old; he will be seven at the end of the week. The news came as a big shock soon followed by grief and tears.

The way I have dealt with it has been to embrace the unexpected world that we were thrown into and find out as much as we could about this VCFS aka q22. dil.11.2. Like any normal parenting world, it’s been a journey of many ups and downs with a bit more obstacles in the way.

For the past couple of years at this time of year I have enthusiastically have attempted to create awareness of VCFS in my local community. This year has been different.

Has VCFS worn me out?

No!

VCFS is only a small part of the story that has been unfolding in my life for the past seven years. It’s been a story of breakdowns, bankruptcy, car accidents, child needing surgery to repair soft cleft palate, child with a diagnoses, Mum getting sick, mum dying, my cousin died and my father in Law died. There has been so much and more that eventually it all caught up on me and for the first time in my life I’m on medication for depression.

I’ve been told by many that I need to be kind to myself. How do you do that??

Recently I took a  three-month break from my studies and as a result I kind of got there. I read novels, took long walks, painted at the community garden and started to recognise more of Gods love for me.

When I thought about VCFS awareness week it made me feel stressed so for the first time ever I said “no, I can’t this year” It felt like such a relief to be kind to myself. I have had to just let certain things go and just do the things that give me pleasure.

For VCFS awareness week this year I will just write this little post and hope that those who read it will check out  the VCFS 22q11 Foundation. On the website you will notice a link to Area Representatives. I am from the Illawarra and you are welcome to make contact with me. Don’t do this journey alone because at times it can  really do your head in!!!!

Learning about emotions

It can take a life time to learn how to deal with our emotions and as we cognitively develop we become wiser about them.

As a parent we teach our children about so many things and when they play with other children more lessons are being learnt through play. However when a child has a disability of some sort, learning about the emotional stuff can be a bit tricky.

My son who was born with VCFS knows all about the happy feelings, yet can still be inappropriate about when to be happy. He knows how to express anger by chucking a big tantrums or annoyance by whinging and getting on our nerves and of course he also  experiences sadness.

What has inspired me to write this post?

Well recently my son’s tantrums were getting a bit out of control and prior to us coming up with an awesome strategy we would say “WILL YOU STOP WHINGING!!!! or “ENOUGH SIT ON YOUR BED……….BLAH BLAH BLAH BLAH”……ARHHHHH BLAH BLAH BLAH ARHHHHHHHHH!!!!!!

Cough cough I have a sore throat now and I am feeling quite traumatized!!

So, with a bit of gained wisdom and prayers we came up with the sticker chart and it has been working a treat. When Zachy begins to chuck a tantrum we say that is a bad choice and I am doing to ban the ipad. When he makes really good choices we reward him with a sticker that goes towards something he really loves, like a watch.

This has been successful now for a few weeks and has made a huge difference in the way Zachy has been interacting with us and others. Yet, something happened on Sunday that alerted me that somewhere along the line we have failed to teach Zachy that sadness is okay.

A song was being played at church and suddenly he said “I don’t like this song” “turn it off turn it off this is a sad song” He then started bawling his eyes out. This was not a tantrum or a kid just wanting his own way, this was sad emotion pouring out of him. I bent down and said “it’s okay” then he said “I don’t want to whinge”

I then realised that he was confused about what he was feeling and thought how on earth am I going to explain this one to him???

Again, last night I was watching The Voice when there was this amazing performance  by Mitchell and Fatai I could feel the deep emotions of it and was really enjoying when I heard a little voice coming from his bedroom say “I don’t like this song” “why??” “It’s sad”

Once again this is not a child just wanting his own way but someone who is experiencing real emotions. Lately he has been talking a lot about his two deceased grandparents and I am sure that he is missing them. Children whether typical developing or those with a disability experience the pain of sadness and it is us adult people, who need the wisdom to teach our little ones all about emotions.