Background

Archie and Chiara are five and three years old, and live in Exeter with their mum Becci, dad Lee, and little brother Sebastian who is 20 months old. All three children have additional needs.

Becci says “Archie and Chiara are both diagnosed autistic, non-verbal, with high care needs. Sebastian has severe delays in all areas and is being tested for autism.”

“Mostly they communicate by leading our hands, we have tried PECS (Picture Exchange Communication System) and I’ve learnt Makaton but none of them have taken.”

Archie and Chiara's story was first featured in or #RealCosts of Christmas campaign, highlighting how the costs of living increase during the holiday seasons.

Archie’s condition

Archie is the eldest of the three children. Becci says “Archie is autistic, non-verbal, still uses nappies, and has very limited sleep at night. He’s on melatonin which has very limited effects for him.”

Becci adds that Archie has a lot of energy, and likes to move around a lot. “He’s very sensory seeking, very full on. He wants to run and bounce and spin. He’s very loud and very high energy, and he takes a lot to keep up with as well. He’s quite exhausting, but lovely and cuddly too.”

Though Archie is non-verbal, he has found his own way of communicating his needs. “With Archie it’s taking you by the hand or pushing you to what he wants, and he’s a fairly strong boy so he can push me there.”

Chiara’s condition

Chiara has a similar diagnosis to Archie, but it affects her differently. Becci explains “Chiara is similar in terms of diagnosis, autistic, non-verbal, still in nappies, poor sleep. Typically she will be awake at opposite times to Archie in the night, which is fun. Again she’s on melatonin which gets her to sleep but doesn’t keep her asleep.”

Becci adds that Chiara can get easily frustrated when she tries to communicate her needs. “She will sometimes scream because she can’t tell you what she wants and you can’t really reason with her. In Chiara’s case she’s just learning to take us by the hand to get to what she wants, but other times it’s like a new-born where she just screams and you have to try and work out what she wants.”

Chiara has recently started nursery, which gives Becci some time to spend with younger brother Sebastian. “She does 90 minutes in the morning at nursery, because she can’t cope with any longer. She generally needs an hour or two of quiet calm time afterwards to recover from socialising. That clashes with Archie quite a lot, because he’s very loud and she needs her quiet time and space, and to be left alone.”

Sebastian’s condition

Sebastian is the youngest sibling, and is currently being assessed for autism, after Becci and Lee recognised similar traits to those of Archie and Chiara. “He’s just about walking and every milestone is delayed. He’s like a much younger baby, and is very cuddly. Sebastian’s still a baby, but he is very quiet. If he does want milk or needs his nappy changing he might whinge.”

Becci adds that she has to make sure Sebastian is safe when his siblings are overwhelmed or energetic. “I have to protect him from the other two as Chiara will get jealous and push him away and Archie will just run around.”

How it affects the family

Having three children with additional needs has led to a lot of changes for the family. “We had to cut our work down from being managers to part-time jobs to deal with the kids and having very little sleep.”

As a result, it can be financially difficult for the family. “We’ve got a very tight budget. We’re doing slightly better this year as we’ve just started to get Disabled Living Allowance (DLA) and carers allowance and things, whereas we didn’t really know about any of that for the first few years. We’d had to cut back on work, but nothing had replaced it.”

“The money we do have goes on the necessities. We have to spend £70 a month on nappies, for example, and they’re only Tesco own brand. That’s before wipes and everything else. Archie will remove his quite a lot, and Chiara and Sebastian will soak through so we need extra sheets and pyjamas for them to change into.”

We really struggled in the past, but we’re just finding some of the support that’s available.

"We’ve halved our water bill for example, which is really important given the extra washing we need to do. We do two loads of washing per day, one of clothes and one of bedsheets.”

“When it gets to the week before payday we’ve had to face the reality of turning things down or off so that we can make things last. We turn the boiler down or off to try and save on that. My friend has lent me money before to make sure we have the things that we need.”

Christmas for the family

“We just kind of check out of Christmas. Like most things, it’s something that we can’t do as a family. We can’t participate in so many aspects, and we can’t afford it anyway, so it’s almost easier to act like it’s not happening.”

“The presents, the countdowns, the traditions, really isn’t something that we can do, or that our kids would cope with. Last year we popped round to see their grandparents, but we could only stay for an hour as that’s all the kids could handle.”

“It’s quite upsetting and stressful. You want to be able to give your kid everything that they need and want, but it’s not always possible.”

“There’s no point doing a Christmas dinner because the kids won’t eat it. We struggle with mealtimes anyway, it’s probably my most stressful point of the day. It’s a small house, we don’t have a dining table. Archie will take my food and throw it on the floor, Chiara will climb on me or try and eat off of my plate, or Seb will start crying.”

“They don’t get excited by presents when they’re wrapped, they don’t understand why something is wrapped up and they can’t see it straight away. Every aspect of Christmas has to be tailored to their needs and what excites them.”

Financial worries at Christmas

“It’s been a case of relying on grandparents to buy them presents. We definitely haven’t bought anything for me and my husband. We might have done a selection box for each of the kids from us but that’s it.”

“Making Christmas special, with very little money to spend, is difficult. I’ve been in tears the last few Christmases, I remember walking in town looking in all of the toy shop windows thinking, I’m struggling to put food on the table, so I definitely can’t buy any presents.”

“The pressure is off a bit this year as we have DLA, so we can maybe do £20 to £30 per child and get a few little fidget toys for them. Luckily the benefit is that they don’t understand enough to know.”

“We’re used to the fact that me and Lee don’t get anything or buy anything for each other, but we want to be able to do it for the kids. It’s upsetting and almost embarrassing to admit that I can’t buy Christmas presents for my children.”

 

How we helped

Becci says “Family Fund provided us with a grant for sensory toys and we’ve managed to get things like a whizzy dizzy and spinning toys, as well as fibre optic lights.”

The family are also using the sensory equipment to build a dark den for Chiara. “All three kids share a bedroom because we only have a two bed house, so Chiara doesn’t necessarily get the space to be on her own and avoid Archie when she needs to.”

“We’ve got a bunk-bed each for Archie and Chiara, and Sebastian is on Chiara’s bottom bunk. We’re going to build a dark den under Archie’s bed with some heavy fabric and light up toys for them.”

How it made a difference

Becci explains:

They don’t really play with normal toys at all and the sensory ones are more expensive.

The grant from Family Fund allows all of the children to access equipment that helps fulfil their sensory needs. “They really help all of the children. They help Archie be more active and get his energy out. Whereas the dark den we’re making is more suited for Chiara to be a calm space, which Sebastian seems to like too. So sensory equipment is important for all of our children, but in very different ways.”


How you can help

If you would like to support more families like Archie and Chiaras', please donate to Family Fund.

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