Background

Kaj is eight and lives with his Mum, Dorota and big brother Neo who is 12 in Crawley, West Sussex. Kaj is one of the stars of our new TV ad with McCain (click here to read more about the ad). He has a diagnosis of Global Developmental Delay, sensory processing disorder and speech delay meaning he can sometimes have social communication difficulties.

Mum Dorota says; “Because Kaj has anxiety around his condition he can be very bossy and loves to be in control of things. But he is also a happy, friendly child who is very passionate about certain subjects and loves walking in the garden without his shoes. He loves animals, music and dancing. He is just my beautiful, amazing boy and I love him for being my biggest teacher, he teaches me something new every day.”

 Kaj’s condition

At the moment Kaj is struggling to sleep through the night and this is having an effect on Dorota too. “I am trying to get to the bottom of a situation where Kaj is waking up at least 1-5 times in the night and doing sensory seeking behaviours like banging his head on the headboard. He is also incontinent during the night. These behaviours will wake me up, he doesn’t seem to be affected by it as he will function fine during the day, but I am affected.”

During the day Dorota has to be constantly aware of things that could upset or trigger Kaj to have a meltdown. “Monday to Friday we have a morning routine focused on getting ready for school, teeth brushed and getting dressed. It can be difficult as he sometimes has tantrums about not wanting to go to school or because we have run out of his favourite cereal. But I am always trying to be one step ahead of him to try to prevent these situations happening. I know my child quite well so I can do that, but there will always be things that come up that upset him and it can be very challenging and difficult.”

“After school can be just as difficult as it all depends on what’s happened at school, which I obviously have no control over. I do my best to make him feel relaxed and content when he’s at home.”

 

How it impacts the family

Dorota explains how her eldest son Neo can sometimes struggle to express his feelings, “Neo is neurotypical and 12 going on 18. I’m really trying to work with him to talk through his feelings so that when the teenage hormones kick in, he feels he has a platform where he can speak openly and come to me.”

“Neo is involved in his brother’s life every day and is considered his carer. Sometimes if Kaj won’t listen to me he will listen to his older brother, they have a “bro talk” as they call it. I don’t want to burden my older child with the needs of Kaj, but it does come naturally to him.”

“I’ve also had to teach him tools to deal with his own anger because he thinks I spend more time with his brother and he gets angry when his younger brother breaks his toys or bursts into his room while he is on a call with his friends. I never want him to feel second best, we spend a lot of time communicating and talking through that and it seems to be working.”  

 

How Family Fund helped

“As you can imagine as a single parent, I don’t always have the means to buy double of everything. Kaj wanted an iPad for quite a long time but for me it’s such a considerable expense that not even Christmas would have been a time for me to get one.”

“The boys would bicker constantly as they had to share Neo’s laptop, they want to enjoy doing their own thing but didn’t have their own devices. Kaj loves watching Netflix and Dinosaur programmes, playing educational apps and games and Neo wants his own time. So, to have them on separate devices now helps with the harmony of the house and I don’t have to be the peace keeper all the time. It also gives me time, when they are comfortable on their devices, to do some washing or even to sit down and have a cup of coffee for myself.”

When Kaj was granted an iPad, we also contacted the family to tell them about our Digital Skills training. “I was very grateful to be offered the opportunity of the training, we have some technical knowledge as a family - the children are very keen on technology, but I hadn’t used an iPad before.”

“For people like me, a working single parent with two children who depends on public transport, an online tutorial or workshop is extremely helpful. Now I have the confidence that Kaj is using the device safely. All it all it was very friendly and supportive as well.”

 

Mealtimes for the family

“Sitting around the table is something I try to implement, but I don’t enforce it. So, sometimes we might sit on the sofa or the floor. I’m not ashamed about the fact that to sit around the table together Kaj has to have his iPad, it’s very common practice in my house. My main priority is that I’ve created a friendly environment for my children so they don’t associate mealtimes with negativity. If that means the iPad is on the table then I’m fine with that so that we can have an anxiety free zone.”

“As much as I would love to have no screens, it really helps Kaj’s sensory seeking behaviour. It stops him from being up and down at the table and moving about constantly when we are eating. This might not be something neuro-typical parents promote but it’s our reality and true to me.”

“Chips are one of the few meals Kaj will eat. I do try to be organic and healthy personally but when chips are the only thing your child will eat what can you do?”