Life can be hectic for mum Emma Smithson with two young children just two years apart especially when one wants to go one way and his sibling is determined to go another way.
It’s a familiar scenario to many families especially when one sibling has a diagnosis of Autism Spectrum Disorder.
Emma and dad Craig had Alfie, five, after IVF but then he was followed unexpectedly by Freddie who is now three. Alfie was diagnosed with Autism Spectrum Disorder in May 2017.
Issues were flagged up when Alfie was two and started playgroup. Emma explains, ‘At first his hearing was tested but that was fine. At that point, we knew nothing about autism. You could sit Alfie down on the floor and he just didn’t move. We thought it might be a developmental problem. I was past myself.’
The couple spoke to Alfie’s health visitor and she suggested he may be autistic. Emma says, ‘We didn’t even know what that meant but then you start doing your own research on the internet and find you can suddenly explain your child through Google.’
Difficulties with communication was an issue easily recognisable. ‘I could see friends interacting with their children and the understanding they had but Alfie would not even acknowledge what I was saying or asking him to do.’
Freddie is a contrast to Alfie. Emma says, ‘Freddie can be hard work. He is very loving and he brings Alfie on. I worry that he may be on the spectrum too but sometimes I think I am being overly cautious because I didn’t pick it up with Alfie.’
Although Emma had heard of Daisy Chain, she hadn’t realised it was specifically for youngsters with an autism diagnosis. Initially she delayed attending the day centre and farm. ‘I think it was just because I didn’t know what to expect, it’s the unknown but I am so glad we eventually did go. The staff are so helpful. Taking Alfie and Freddie really is a two-person job as they want to do different things but you do get the help and support of the staff and they check you are ok.
‘Also, when you are having a particularly hard time, it is good to go somewhere where everyone understands what you are going through. The other parents at Daisy Chain actively want to talk to you whereas it is not so much like that in mainstream places. It helps when people pass on information to you, I feel that I am only just starting to find my feet in this world of autism and you have to find out things for yourself. No-one tells you everything you can access, you do learn a lot from Daisy Chain and other parents.’
Emma has taken advantage of having Daisy Chain craft social stories for some of Alfie’s behavioural issues and he now attends an after-school club.
‘Alfie does have a lot of sensory issues. He can be loud but he doesn’t like it when he hears other people’s raised voices. You never know what might trigger him to get upset and meltdown. He suddenly stopped going on escalators and he won’t go in a lift – you just don’t know what is coming next, little changes can be a massive deal to him.’
Like many people with an autistic child, family life has to adapt to their needs. Craig is a football journalist and works from home and Emma can be flexible with her mobile hairdressing business. ‘But I have had to cut that back a lot to have the time to look after the boys. Freddie doesn’t sleep so I am up every night with him which means I have to try and get some sleep in the morning. There are also a lot of appointments to keep. We were initially turned down for an Educational Health Care Plan for Alfie because some information was not supplied, we had to start the whole process again. It is very time consuming just getting through all the paperwork but we do now have an EHCP in place for Alfie and we are looking at a specialist school setting for him.’
Craig and Emma struggle to find places to go and things to do for both the boys especially as their interests are so different. ‘Alfie loves the beach but he has no sense of danger and would just run into the sea if you didn’t keep hold of him whereas Freddie doesn’t like the feel of the sand so he doesn’t want to go at all. The outside play areas at Daisy Chain are absolutely brilliant though as there is something there for both of them, although Alfie would stay upstairs playing with the trains for the whole time. It is really important to us to have something to do altogether as a family otherwise we would constantly be having to split up to do activities.
‘It can be isolating having a child with autism. You have to try and do things that you know will go okay. School holidays are a nightmare, finding things to do, just going to the park can be tricky and you can feel very defensive if people are staring and you feel they are judging you.
‘That’s why Daisy Chain is important because you don’t feel judged. I feel we were very naïve about autism. Daisy Chain helps you learn what you need to know.’