Michelle and Mark Blackburn could hardly believe the reports they got from nursery about their small son, Jacob.
Their toddler – who was happy and content at home, enjoyed his naps, spoke earlier than most babies, ate and slept well – was apparently hitting out at other children, shouting and having tantrums.
The couple were so surprised at the behaviour described they actually took him out of his one-day-a-week placement. But Michelle started to have misgivings. “One day, when I took him to nursery by a different route because the traffic was bad, Jacob had a huge meltdown in the car and I didn’t realise why. It was so bad that when I finally got into work, I just cried my eyes out. Jacob’s behaviour was becoming more challenging,” she recalls.
“Jacob would also spin and flap his hands, but we just thought it was cute when he was a baby,” she explains. When Jacob started pre-school, his awkward movements became more apparent and then he began to suffer from night terrors. Michelle took a video of the hand flapping movements to show her GP and Jacob was referred to a paediatrician.
Around the same time Jacob started nursery school and within four weeks, Michelle and Mark were called in and told that the nursery staff had detected signs of autism. “I was so upset. I didn’t know what to do. I thought it was the end of the world,” Michelle recalls.
As Jacob was placed on the pathway for an autism diagnosis, Michelle was already pregnant with her second child. “It was so daunting to think your child could have a lifelong disability, but I was relieved when he got the diagnosis. All the time you are questioning what you are doing wrong as a parent and then you are given an answer as to why you are finding parenting so difficult.”
At diagnosis, the family were given leaflets for Daisy Chain, first visiting when second son Oliver was just four months old. “And we’re still going six years later,” Michelle laughs.
Jacob is now ten and Oliver six-years-old. Michelle says, “Jacob can be very rigid, he doesn’t like change, we have to plan everything so he knows what’s happening and we can’t go off plan.” More recently, Jacob, who is hyperactive has now been given an additional diagnosis of ADHD.
Michelle doesn’t mind admitting times have been tough, “I didn’t manage to get a photo of my two boys together until Oliver was four months old as Jacob was not interested in his brother at all. He couldn’t stand the noise when Oliver cried. Things are much better now as they have got older, and Daisy Chain has given the boys great opportunities to spend time together and for us all to be together as a family.
“It’s lovely to have somewhere to go where you don’t have to worry that it is all going to go wrong and you just have to pack up and come home. Sometimes it would be too stressful to bother to go out, trying to cope and endure the stares which you do notice. It would be easier to stay home and not end up having to return home feeling shattered, stressed and upset.”
As Jacob is getting older, Michelle finds they rely on Daisy Chain even more. She explains, “Jacob is growing more complex as he gets older and we now attend the high needs Sunday sessions rather than Saturday activity days, as he can no longer cope with those. Sunday sessions are much quieter and he is not so overwhelmed. He did some pond dipping recently and absolutely loved it. Oliver loves it too.”
Currently, Jacob is attending an after-school social club and holiday clubs where he receives additional one-to-one support. “He would go all the time if he could,” Michelle laughs. “He has known Daisy Chain nearly all his life so his anxieties are much lower there. It is very restricting for us as a family with what we can do, where we can go. When we come away from Daisy Chain having had a nice time, we all feel happy and calm. The boys know the staff and we have made lots of friends through Daisy Chain, friends you can call on to talk to if you have had a bad day and they understand because they are in the same situation.
“Without Daisy Chain, I don’t know what we would do. We try other things but Jacob can’t cope. It’s even more important in the long summer holidays, it really is a lifeline for us.”