Mum Alyssa had a complicated pregnancy with her twin boys who were born at 33 weeks at Great Ormond Street Hospital in London as one twin had been diagnosed antenatal with a rare brain condition.
Alfie was born with Vein of Galen Malformation, which results in abnormal connections between blood vessels within the brain, and underwent surgery at just 34 weeks.
It was a very difficult time for Alyssa, husband Jon and all the family as there was a lot of commuting to London, both before and after the twins’ birth. Alfie then had to have a second operation at six months old.
Alyssa admits she expected having twins to be hard work and after all the health issues she was prepared for there to be some developmental delays with her boys – both were late talking and Alfie was late walking.
“I knew though that Alfie was different to Charlie,” Alyssa explains. “He was diagnosed with ASD just before he was five and we were then referred to Daisy Chain to do the Early Bird autism awareness course. As parents, we were accepting of Alfie’s diagnosis because potentially, with his brain condition, he could have been more disabled. However, autism is a lifelong condition and it was harder for the family to come to terms with and accept.”
The boys were supported at birth in different hospitals and Alyssa says they are more like siblings than twins. “Charlie is bossier while Alfie is placid. Charlie gets that Alfie is autistic but he doesn’t fully know what that means and he can’t be understanding all the time at eight years old. Charlie, you can’t turn off and Alfie can barely get a word in – typical siblings really,” she laughs.
With husband Jon a business manager, Alyssa back at work as an adoption social worker and support from Daisy Chain, she feels that life is pretty much back to normal now eight years on.
“Daisy Chain really helped with that. We could never find anything for Alfie to do independently, he couldn’t cope with any mainstream activities. I want him to be social but Alfie needs one-to-one specialist skilled care. The after school and holiday clubs at Daisy Chain provide Alfie with a quality respite activity. I can leave him there with the peace of mind that he is in safe hands. There is no other provision where I can leave him and have some genuine respite knowing people understand him and care for him with the utmost regard.
“We access as many of Daisy Chain’s clubs as we can have – I wish there were more because Alfie loves them. It also gives Jon and I the chance to do things with Charlie that he wants to do but that Alfie would not be able to manage. The staff at Daisy Chain are fabulous so Alfie is not stressed at all and neither am I. I really don’t have to worry about him at all when he is at Daisy Chain,” Alyssa smiles.
“Anywhere else we go with Alfie, I have to go with him and I will be anxious as to whether he will cope. Alfie feels very relaxed at Daisy Chain. He is welcomed in personally and he loves the activities, loves doing the cooking and particularly making things. He always comes out very proud of his creations.”
Alyssa believes many people don’t realise what a difference Daisy Chain makes to families in the Tees Valley affected by autism. “It is very specialist for autism and has had a positive impact on Alfie’s communication and social skills. He is much more confident now in his relationships.
“It’s also been good for us in learning to understand autism and discovering different coping strategies. I want to put something back where I can so whenever anyone I know is giving things away to charity, I will go and collect it from them and take it to the Daisy Chain Superstore to help raise funds.
“Our family life does have its challenging times so Daisy Chain offers an environment where you don’t have to explain anything. I have lost tolerance with people staring if Alfie gets upset in public – he is not having a tantrum, he is distressed. It’s easy to get exhausted and angry which is why Daisy Chain is so important and for Alfie, taking part in social activities is amazing. We need more of Daisy Chain please,” she concludes.
21st February 2018