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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It’s Been A Great Holiday

Holidays are nearly over and for the first time ever I’m not jumping up with glee. Mind you, I am looking forward to back to school and having routine again.

So what’s the difference?

There has been a lack of the usual meltdowns and instead there has been interesting conversations, compliance and just general enjoyment. My little man has come a long way and is maturing into a lovely young man. My vision for him has been raised where it’s now time to stop underestimating him.

I can’t tell you how good that makes me feel.

These holidays became all about Star Wars

This visit to the river was unreal as I’d never seen my boy have so much fun swimming. He was ducking his head under water and trying to look for the city underwater.

This day was great, while Jason and I were getting immersed in mud Zach was off making his own connections with the community.

1875

Even on a day trip there was lovely behaviour from the back seat. There were a few “are we there yets” but no too bad.

OMG he even cracked a whip

This day we had a lovely cafe date. I was so relaxed and nothing was a big deal.

look at that smile

Again, another coffee date where there was conversation and lovely interactions.

With so many lovely moments this holiday I am not worn out and for that I am totally grateful. Something is different and I shall cherish it. I look forward to this year and I know within my guts my son is going to be okay.

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.

 

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”.

It’s time to grow up

You know what I am sick of? All the hooha that surrounds the feeding of the most vulnerable people of our society; babies!!!

Just recently Koschie from Sunrise caused a stir with his discreet comment when it comes to women breast-feeding in public.  Many blogs and pictures on Facebook have displayed a good point, that nobody seems to be outraged when girls wear skimpy clothes that ride up their bum but God forbid any poor suckling infant that needs a drink at the most inconvenient time.

Yes little baby, a lot of adults in this country have a big problem when you need to have your basic human right fulfilled. They see your source of nourishment as offensive in public for some reason???

`And I’m not finished there.

You breastfeeding Nazi’s that put pressure on mum’s to breast feed, BACK OFF NOW. Some women do not get their milk and  some babies can not suck due to a medical condition, as is the case with me. Sometimes this actually happens and as the uptight society that we are when it comes to feeding infants we don’t provide support for those who have to bottle feed their baby. Aside from medical conditions breastfeeding is difficult for some and if a women chooses to bottle feed her child then three cheers for her, her baby is not going to starve to death.

I’m tired of the pathetic attitudes that surround this topic. How do other nations and races handle this natural situation?? Most probably with maturity that is lacking in this great nation of Australia. I suggest that we all grow up and start supporting each other with a big group hug….hang on, is that even allowed these days?? Hugging??

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

My boy want’s long hair and I don’t care!!!

My Son want’s to grow his hair and I am happy to let it happen.

He has to endure many rules in his young life and so he should, as he is a child. However, there are some things in life that shouldn’t be a rule such as if a child want to sport long hair or not!!!

Okay, being a sensory child when confronted with scissors to his hair it’s like we are killing him and with that being said avoiding hair cuts is awesome!! Yet believe it or not, my young child has an opinion of how he would like his hair and his desire is for it to be long.

One of the first reasons he gave for growing his hair was so he could be like his Uncle Wayne.

Unfortunately my son has never met his uncle as he passed away quite a few years ago, but we have lots of memories and this awesome photo to look at.

The second reason he gave was because he thinks he’s a rock star. Let’s face it!! We all have dreams.

For me, I don’t mind little boys having long hair and I don’t see what the big deal is. You know, there really is nothing about my life that has been regular so why not follow the tradition of who I am and let my child come with me.

let the hair grow!!!!

A glass of ice with lemonade!!

Who knew that a glass of ice with lemonade could be so entertaining??

We took a big risk today taking our son out for lunch in a crowded cafe/restaurant. It’s always a tad stressful and we have avoided doing it for some time.

As we were waiting for a table he nearly started to have a melt down but was able to calm down when we were directed to a table…… phew crisis diverted!! We ordered lemonade for him and when it came it was the best calming thing I have ever seen 🙂

He was busy stirring the lemonade, putting the ice in his mouth and later blowing bubbles!! These are all sensory things that had an obvious calming effect on him…I can’t wait to tell the OT, she’ll be stoked!!!!!

So the risk paid off and we had a lovely family time at a crowded restaurant……..nice 🙂

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But all children do that!!…do they really???

If there is one statement that gets on my nerves since finding out my son has VCFS it is this:

Oh but all children do that!!

Sure…… all children chuck tantrums, push the limits, want what they want and want it now blah blah blah blah blah.

But can I just express how it makes me feel when people say this to me?

  • I feel patronised
  • It compounds my frustration
  • It generalizes my experience and makes me feel like my difficulty isn’t valid
  • I feel as though I am unheard
  • It makes me want to shut down and not talk about how hard it is to bring a child up who displays autistic traits
  • It makes me feel worn out

I am not the person who seeks sympathy, I just need validation. I try not to windge about my circumstances but when I share about my life with a child who has a disability I cop the dreaded statement Yeah but that’s just kids. Please, just hear me.

I have a child who chucks three-year old tantrums in a near seven-year old body. Do all children do that? ?My son has obsessions that drive you crazy, like at the moment, it is watches and he constantly goes on about the time….ummmm I’ve listened to 6-7 year old conversations and they don’t sound like that!!!! My son has always been an absconder. Funny, in my experience I notice  how all the other children sit nicely and participate with designated activities while my son does his absconding trick and then I’m on the run to chase him!!!

Please, I ask If possible when talking with a mum or dad who has a child with any type of disability or ASD and they begin to share their experiences with you I ask that you refrain using the statement Oh but all children do that. 

If you use it with me I simply will not believe you.

Sorry for the rant but I’m feeling a bit fragile right now!!

Caine’s Arcade…..An inspiring story!!

This little film brought me to tears.

It’s about 11 minutes of your life well spent as you view a young boy’s imagination and ability to play. He has an awesome dad who just allows his son to use objects with no monetary value to create an innovative cardboard arcade!!!

Caine is the kid who will never be bored in life. Caine is the person who will overcome disappointments and will find ways to overcome tricky situations. Caine is a genius as the film-maker states.

Why did this bring me to tears?

Because it is a welcome relief from the consumerism that is blastered at parents that says “children must have this!!” For goodness sake the kid is using cardboard boxes and things that would otherwise be discarded as worth nothing!!!

It is also a wonderful to see this dad  give his son the opportunity to create and not just state it as rubbish.  It also impressed me, how when Caine asked for a claw machine his dad replies “Just make one”.

As a result, Caine uses his brain and makes one!!!!!!