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!!

Advertisements

I was blessed with a car!!!

See that lovely lady posing on top of the white car in the photo below? That’s my friend Nikki who blessed me with it back in 2008. We met at TAFE when I decided to redo my Major in Fine Art. One day she caught me in a moment of great distress as I’d only found out  a couple of days prior that my Son had been diagnosed with VCFS. I was a mess and couldn’t stop crying, then Nikki came after  me to find out what all the drama was about.

 After that distressing time I know I found strength in God to keep on going and move pass the grief the best way I could. During all this time I didn’t own a car as a lot of traumatic things happened to us all around the same time. Two of them being bankruptcy and my husband had a car accident leaving us effectively without a car.

Nikki and I would joke in class that we would write a letter to Bill Gates that perhaps he could give me a car and Nikki a brand new one. You never know???

I did however put my faith in God to believe for a miracle because that was the only way we were going to get a car. Little did I know that during that time Nikki was thinking to her self, how she could get me a car.

About a year later and not seeing Nikki for six months due to having different TAFE days I got a rather mysterious phone call from her. She was asking me if I still needed a car and to keep a dollar coin on hand. a few days later I got another call from a very excited Nikki who told me that she just “can’t keep this secret anymore”. that’s when she informed me that she was giving me her car!!!! I went all red and hot and then I screamed out loud.

This lady moved mountains to get herself a new car to pass on her old one, which by the way was ultra reliable. The only condition stipulated was that I call the car Chelsea, Chelsea Chino!!!

This is an amazingly wonderful story and I am always so grateful that God used this very cheeky lady to give me a car. I will never forget her generosity and willingness to make a huge effort to help me out. Receiving that car made a big difference in our lives. It enabled me to take my Son where I needed to take him. I could contribute more to community activity’s including my church and creating awareness for VCFS. I had freedom again to go where I wanted to without putting people out or relying on other’s all the time.

Through this I have learnt that generosity makes a big difference and you should never be afraid to excercise it. Nikki believed in me and was moved with compassion to help me. Trust me being on the receiving end of this type of generosity just blesses your heart!!!

My Getaway!!

The thought of a getaway with just myself had never occurred to me before. I feel like I’m a happy and calm person in spite of the drama’s that rage about me like a frenzied storm. Recently My Husband and I were challenged to seek out time alone as life with a child who has a disability can be very stressful.

My Husband jumped at the chance and his time away really did have a calming effect on him. His first night away he rang us crying as he missed us but the next night he was fine. (I’ve probably just embarrassed him AGAIN!!)

Even though it wasn’t my turn yet I felt calmer as well. It was really quite easy to deal with my Son and it felt like there was less stress in the house. When Jason came home it was great and you could see how the time apart had greatly benefited everyone in the family.

So now it will be my turn next week and I am so excited about it. I’ve booked a cottage and I have no great plans except to just enjoy the time. I’m looking forward to uninterrupted sleep and the thought that I wont need to get anyone ready for bed and school and all those mummy things one has to do.

I feel a surge of excitement that I never expected to feel. I didn’t think that I needed it, truly I am a coper and I forget that really I must take that time out and recharge.

I reflect on the past six years of our lives and they are full of drama’s that we did not ask for. There has been job loss, bankruptcy, repossession of one car and accident with the other, our child needing surgery, our child being diagnosed with VCFS, my mum getting sick and needing oxygen twenty-four seven and then eventually she passed away.

Through all of these things I have kept my Faith in God and that’s probably why I haven’t had a full breakdown but don’t get me wrong I have had meltdowns and bawled my eyes out here and there.

I really think that this getaway is a gift that I must take, enjoy and come back refreshed and ready to go. I also see it as a vital part of our self-nurturing plan, in order to maintain the longevity required for being a carer of a child who has a disability.

Coping with VCFS

Most days I cope extremely well with VCFS, but there are some days I don’t cope at all. Our family  lives  with VCFS everyday and it’s something that we never asked for. I do not feel sorry for myself nor do I ask for pity. Pity only enables one to stay trapped in a quagmire of unbelief  and only cripples all from moving forward.

When I was first informed of our Son’s diagnoses of VCFS I was devastated. Grief came as I had to come to terms that my Son had a syndrome and what did that mean?? I cried every day for three weeks and I lamented for my little boy who we love very much. After the three weeks I stopped crying and decided that I needed to start being an advocate for my Son and so I did.

My first step was to reach out and find other parents who were facing the same thing as us. that’s where I made contact with VCFS 22q11 Foundation and spoke with Melinda the then president of the foundation. Stepping out and meeting other’s in the same situation is very empowering because you find that you are not alone.

Most of my  coping comes from knowing Jesus and that I can put my faith in him. This is especially beneficial when things become really tough and I haven’t got a clue what to do next. I believe a lot of the strategies that have come through was a result of prayer with my wonderful supportive church community.

The other things that help me cope is going to all my coffee support groups. unfortunately most of my VCFS community don’t live close by (but there is facebook) so I just join local  groups. Even though VCFS isn’t their issue we still battle the same issues, such as grief and always feeling like your on public display just to name a few things.

I  Also found taking my journal to a local cafe weekly such a regenerating and refreshing experience. I get to diffuse and off load all my stuff onto the pages of my journal and it feels good!! I also get to meet many people while I’m there and that too gives me happy feelings.

My attitude towards VCFS is another way in which I cope day-to-day. I find that embracing it helps as I can’t do a thing to change it. I cannot make it better so I see it as a door to a whole different world.  This world is not bad and has given me much joy as I meet other children who have various disabilities and they are all beautiful.

VCFS is not an easy ride but it is maintainable.

Just doing something normal!!

The day I witnessed my son doing this I quickly grabbed out my phone and took this shot. So what’s the big deal? I hear some wonder. Well whenever I see my Son want to do something another child is doing it shows me he has overcome yet another developmental milestone. His progress is a little slower then those in his age bracket but he eventually gets there.

This blog is just a celebration of our kids that have a delay and don’t quite fit in the box. I want to acknowledge the Mum’s and Dad’s who have to face this situation and embrace every mile stone our children take with lots of smile’s and  gratitude!!!

My Child

I was inspired to write this piece when I read something that disturbed me about a child who was doing pre-school homework and the mum got so frustrated that she made the child cry. What if that child had additional needs? what if that child’s strength’s were in art, music or athletics’. What if that child was just being a child and all they wanted to do was play with their toys or jump on a trampoline?

Children learn through play and being allowed to explore the world around them. It is so crucial for a child’s development to be free from unrealistic adult expectations of perfection. What has happened to the world that kids can’t just be kids anymore? It’s provoked me to write this little poem below all about my child who is far from perfect and in fact had some bits missing from his DNA!!

My child knows how to have fun

My child knows he is  loved

My child is loving

My child has a friend who he can conquer the world with (or the playground)

My child knows who his tribe is

My child knows how to laugh

My child has a sense of humour

My child can make people laugh

My child can run very fast (especially when he is absconding)

My child loves music and has  rhythmic aptitude

My child is experimental

My child is not perfect

My child is happy

Where is Q22?

This is an important painting due to it’s symbolic nature. It expresses my reaction to my son’s diagnoses of VCFS (velo, cardio, facial, syndrome) aka. q22.dil.11.2

This image of the child holding the balloon is very significant. Zach is surrounded by bigger things than himself but his focus is up. He is smiling up at the balloon and the balloon is orange like the sun, symbolizing hope and a sunny outlook.

The D.N.A strips are painted red like blood and incidentally it is a blood test that is required to determine whether or not a person has VCFS

The inclusion of the question “where is q22?” promotes another question what is q22? This then leads to an opening to talk about this common, yet little known condition.