{‘Beautiful You’} Aimee’s new project celebrating special children

Local photographer Aimee Cook is making a difference. She is making a stand against the norm and celebrating the smiles of some very special little children.

Her latest project ‘Beautiful You’ is moving, strong and remarkably generous.

You can check it out on her blog -> Aimee Cook ‘Beautiful You’.

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The first life she captured as part of the project just happens to be one of our favourite little Nesters, Darius. You can find his story here -> ‘Special Needs a mother’s story’

The Nest salutes Aimee for taking the time to create such a beautiful project.

{This is life} Can you help this little boy find his independence?

A little while ago we shared a story about a brave, determined, independent little man who suffers from cerebral palsy and epilepsy. His name is Darius (‘DJ’ to his friends!) and he is a strong little guy – you can find his original story here -> ‘Special needs – a mother’s story’

It has been a while since that story so we thought we would provide an update on our favourite little fighter. Here, his mother, Mel shares DJ’s progress:

Melinda and her beautiful son Darius

Melinda and her beautiful son Darius

DJ is doing great, he is now nearly 4 and is quite a cheeky little boy. He lights up our days and while some days are tough he is a very loved little man.

Since I last shared my story with The Nest family the reality of our struggles with DJ’S cerebral palsy have grown. The cerebral palsy is getting harder and harder to deal with every day. The main reason for this is because as he gets older he is getting more difficult to carry, and worse still he is harder to understand. He gets so frustrated if we can’t help or don’t understand what he wants.

We are starting to prepare him for  kindergarten in 2 years time and in the last few months DJ has trialled a talking device. This device is designed to assist both him in sharing his needs with us and in return assists us to interpret what he wants. We are trialling these devices to see if they will help his communication skills and assist him to be able to make decisions for himself. Finding the right one for DJ is as ongoing trial and error process. dj2bw

At the end of 2013 we made the decision for DJ to trial a powered wheelchair. While this was an exciting moment for us all it was never a decision I thought I would have to make as a parent – the conscious thought the my child will need a wheelchair probably for the rest of his life is scary and upsetting. Knowing that your child may never walk is something you never want to think about – but this is where we find ourselves now.

So, we trialled the wheelchair knowing it will give him the independent life that he needs and to help him to keep up with his friends.

We knew we had to try and give DJ the best opportunities we could but we were surprised and alarmed once we realised the costs associated with providing our little man with this kind of independent freedom.

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While we will be able to receive some funding from the government to assist little DJ in getting his chair we need to upgrade our family car so the chair will fit! This is because his wheelchair will become his seat in the car. Once we were told this, we started researching cars and discovered that the basic modifications needed to a car would mean a new car would cost us anywhere between $50,000.00 to $80,000.00. The funding only goes towards $10,000.00 for the modifications and the conversion alone costs up to $40,000.00.

This is a expense we never thought we would have to budget for, but we have to find the money to help him.

We recently recieved a phone call from a very generous local organisation who were selling their already converted car and they had heard our story and wanted to offer it to us first. It meet all our needs as it had enough room to transport DJ’s sister Yazmin as well. Plus it had an electric lift and ramp to get the wheelchair in and out which would save me from trying to lift it all the time.

So, like any normal family we went to the bank assuming we could get a loan. Then heartbreak struck. Due to our family’s financial expenses and relying on only my husband’s income they wouldn’t give us a loan. We were so upset – our perfect car and we couldn’t afford to get it. I was so distraught. Here was the perfect opportunity to give my little man a chance at freedom and it was slowly slipping away from us.

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One of my friends suggested that we should try and fundraise the money to get the car. It was not something I had really thought about before and was a hard decision, to actually ask people for help. What is sad it that we also received quite a few negative comments about trying to fundraise this money. I don’t understand why people can’t just see that we are trying to help give our little boy some independence for his future. We need to be able to take him to all his weekly appointments between Orange, Bathurst and Sydney.

I opened a page on Go-Fund-Me which you can find here -> Go-Fund-Me-Darius and we would really love some more support. Most of the community has been overwhelming in their support for our boy and while we are getting closer everyday to our target we really need some more support.

line4Nesters if you can help this gorgeous little man, even just a little, then please get to the Go-Fund-Me-Darius site and make a donation. Please help this mum and dad find their son’s independence.

Special needs – A mother’s story

I recently met with someone who opened my eyes to how different life can be. How your world and expectations for your child can change so quickly.

Melinda (‘Mel’) is a remarkable person, friend and mother. Her son Darius is 3 and has epilepsy and cerebral palsy, but he is much more than that. He is a little boy with great parents who are doing their best to give their little man the best life possible.  Whilst it is certainly not easy, Darius is one very lucky little man to have such great support around him.

Here Mel opens up about life, her family and the journey they are on together.

Melinda and her beautiful son Darius

Melinda and her beautiful son Darius

Central Nest: Hi Mel, thanks for chatting to us today. Tell us a little about your son Darius.

Mel:  Darius is aged 3, but is more like your average 18 month old. The background to his story goes a little like this.

I had a fairly normal pregnancy. Our little man was 4 days overdue and once born had normal Apgar results (9 & 10). He needed no assistance with his breathing and for the first 12 weeks was fine and just like any other baby.

I had trouble feeding him and when the community nurses weighed him at our local mums’ group he had lost 200 grams. The health nurse then advised us to put him onto formula. After doing this we found he started to progress a little bit but he still didn’t do what the other babies were doing. For example when he was on his tummy he wouldn’t lift his head, he didn’t roll like other kids. I started getting worried but everyone just kept telling me that boys often develop slower than girls and not to worry.

Central Nest: When did you realise that something was seriously wrong?

Mel: When he was 6 months old Darius was laying on the floor and all of sudden went stiff and his eyes rolled back. I couldn’t get in to see my GP so I went to the hospital.

I remember that I could hear nurses saying things like “She’s just a first time mum and he is teething”.  I honestly thought I was overreacting.

The paediatric team (6 people) came down to emergency to see him. He had grand mil seizure in doctor’s arms and he was wheeled out to emergency and incubated. I remember how scared I was. My little man was given medication to try and stop the seizures.

I was alone because no one knew I was at the hospital. I hadn’t even told my husband because I didn’t want to worry him at work.

Initially they thought Darius had meningitis and sent him for a CAT scan. He continued to have more seizures. My little boy was also given a lumbar puncture. I had to leave the room. I wasn’t able to be in there with him. They finally confirmed it was not meningitis.

Central Nest: How scary, what happened next?

Mel: Darius was sent for an EEG (which reads electric waves in a person’s brain). They decided that due to the number of seizures it was epilepsy.

Once we had a diagnosis we were given medication and he started to improve and settle down.

He was also diagnosed with cerebral palsy and a global development delay.

Central Nest: What causes cerebral palsy?

Mel: It is caused due to lack of oxygen to the brain. It can be caused before birth so the child can have a stroke in the womb or during birth if there is a problem. They have decided that Darius’ cerebral palsy wasn’t caused during labour or before birth as they can see that on MRIs. So they suggest that it probably happened sometime within the first 12 weeks. Maybe he had a seizure in his sleep, but we may never know definitely what happened.

Central Nest: How did you handle his diagnosis?

Mel: When I first heard the diagnosis I don’t think I absorbed it properly. I left the doctors thinking ‘ah okay’ and didn’t think much of it. It took about 4 months to really sink in. I was diagnosed shortly after that with anxiety and depression. I think it was around that time that I finally saw the bigger picture and what our lives would become.

Central Nest: How have your family and friends handled the diagnosis?

Mel: Some people have been great. It definitely has shown us some people’s true colours. Heartbreakingly though, some people have not handled it as well. Sometime people will ignore Darius and myself if we see then down town. Often my husband’s older daughter (aged 6) is invited to events but Darius is not. I guess it is because they don’t know how to handle Darius. What they don’t realise is that in a lot of ways he is much like a typical 3 year old!

He loves Thomas the Tank Engine and cars. He often throws a tantrum if he doesn’t get his own way. He is full of life and pulls you in with his smile. He has the biggest personality.

Central Nest: He does sound a lot like a typical 3 year old! How do you balance his development age of 18 months with his actual age of 3?

Mel: It is hard. We have to balance things constantly. While some behaviour we have to let go of because developmentally he is only 18 months old but we also don’t want a bad behaved-tantrum-throwing 3 year old!

Having said that, he is normal to us. It isn’t until we see him with other 3 year olds that we realise how different he is. I have a picture in my head that says even though out loud I say he is aged 3, to me in a lot of ways he is 18 months old.

Central Nest: What do you find are the hardest things about having a child with special needs?

Mel: I often see people on social media complaining about having sleepless nights because their children are teething. Or their child has a cold. I just want to say to these people ‘Think yourself lucky that your child is healthy’. People whinge that their child is on antibiotics, my son is on medication everyday for the rest of his life. Everyday.

Don’t think how terrible your life is. Realise a cold is a cold and it will go away. Your child is healthy.

Social media upsets me. I always think ‘you really don’t know how bad it can be’.

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