Cathy and Steve Alewood have known about Daisy Chain since its very beginning when they began to donate unsold food from Sainsbury’s in Middlesbrough where Steve was the manager.
At that time, they couldn’t imagine how important it would become to them. Now the family are regular visitors since grandson George, nine, was diagnosed with autism just before he was three years old.
Son Craig and daughter-in-law Kate have two other children – Ellie, eight, and Maggie, three, and the whole family regularly attends Daisy Chain. ‘We never really knew where to go as a family, we always felt on edge. George makes noises and flaps and people stare. We were lucky to know of Daisy Chain already so we knew where to go when George was diagnosed. I just drove straight there, went in and said, ‘I hear you can help me,’ Kate smiles. ‘We feel at home at Daisy Chain, I don’t know what we would do without it,’ she admits.
Kate explains how George’s diagnosis came about, ‘George was a very difficult baby. He was always hungry, never slept and we were always worried about him hurting himself, he was like a danger magnet. I had Ellie when George was 16 months so it was exhausting.’ She recalls looking at friends’ babies and seeing that George was different. ‘He didn’t respond to his name and he would play, laid on the floor with his cheek pressed to the carpet and line his toys up.
‘I went to join a playgroup and was filling in the form which asked about behaviours and as I was writing I was thinking there was something wrong. After observations in play group, George was referred for diagnosis. ‘I thought he was too young to be diagnosed but there was no doubt.’
George also has a condition called Neurofibromatosis (NF1) which is a general name for a number of genetic conditions that cause tumours to grow along your nerves. More recently he has been diagnosed with severe ADHD for which he takes medication. ‘George did very well in nursery with support but when he got to Year two he crashed and burned. We had to wait until Key Stage 2, Year three, to move him to Junction Farm Primary in Eaglescliffe where there is a specialist support unit. That is brilliant for him. George could be really hyper and needed help to manage his anger before he was finally put on the ADHD pathway. He loves going to Daisy Chain and is much calmer in himself now, he recognises that he may get annoyed but he does not talk about ‘hating’ other children now. He says he feels like himself now and that make me feel so much better.’
At Daisy Chain Kate and Cathy have got to know a lot of other parents as well as the charity staff. The Saturday activity day is a big favourite of the whole family, ‘George like the structure and routine. He can see on the visual timetable what the activities are and choose what he wants to do. It’s great that we can go as a whole family and it feels very safe with lots of volunteers to offer help and support. I don’t know where else we would go or what we would do to fill the whole weekend without it as George is really not keen on mainstream environments.’
While George regularly attends an after-school club, Ellie attends the Sibz club and Maggie goes to crèche and Kate and Cathy attend The Links support group for parents and carers. Kate laughs, ‘I have a big holiday planner and the first thing I write on it is Daisy Chain, all over it. The holiday trips are fantastic as you know you are with people who are all in the same boat which makes you feel better supported.’
When Kate and Craig are working, Cathy can take the children to Daisy Chain. ‘It would be too stressful in a mainstream place with three young children to manage whereas I know if I need to take Maggie to the toilet, George is in a safe place and looked after.’
As Craig works full time in IT and can’t get to The Links, he set up a support group for dads which has a Facebook page with 75 members and growing as well as meeting regularly every other Sunday in The Highland Laddie in Norton.
Says Kate, ‘It is important that all parents get help from each other and the experts that Daisy Chain brings in to speak. It’s a mine field when you have to negotiate with authorities on diagnoses, education health care plans. Getting suggestions is really important. It’s really hard to get to see an occupational therapist but we had a talk from one at Daisy Chain and got help that way. When George is excited or overwhelmed, he shakes his whole body and he will growl or roar so she showed me how to give sensory feedback by pushing and pulling his arms which really helped.
‘Recently I was in a supermarket and George was pushing his head under my arm so it looked like I had him in a headlock and asking me to squeeze him. It was the sensory input he needed so he didn’t throw himself on the floor. Going to Daisy Chain not only gives you strategies to deal with behaviours, it also gives you confidence to cope in public.’
For Kate and for many families with children on the autistic spectrum, Christmas can be a difficult time of year. ‘It seems like other families are excited and looking forward to it, so it’s not easy to admit you are not and you are wishing it was over. It’s times like this when it’s good to share with other parents who understand what you are going through and don’t just think you are being miserable.
‘It’s somewhere you can talk about your child’s behavior that you think it is worrying and terrible and no-one will be shocked. There will be someone there with experience of the same or worse. There’s always someone to listen and help at Daisy Chain.’
23 February 2018