Tori’s story

Background

Tori is 44 years old and lives in Angus with her partner, Michael, and children, Rosie, 15, Millie, 12, Beatrice, 11, Gabriel, eight, and Memphis, six. Millie has autism.

Family life

Tori explains “Millie was diagnosed at the age of six, so quite early for a girl. She struggles with changes to routine and doesn’t manage unforeseen circumstances very well. She can be a very sensitive little girl. Millie has a younger mind-set when it comes to certain things, but she’s a little Einstein in other areas. She has a very academic brain, but socially, Millie’s much lower than her peer group.” “Millie’s the only one in the family who has her own bedroom. She doesn’t cope well with big spaces and likes to have her own small, quiet space. Millie doesn’t sleep well, and has been on melatonin since she was four years old. You can’t go into her room and move anything as she will know if something has been moved or interfered with.” “Everybody in the house works as a team, and that’s the only way we can do things because we’re such a big family. Everybody has little jobs to do. Millie likes to get up in the morning and help with breakfast. She likes things to be in the right order, so she enjoys loading the dishwasher. We’re a really close family and I think we’re very understanding of one another. I’m not sure if that’s luck or something we’ve instilled.” “Everything has to have routine. If we go anywhere in the car Millie has to know the route we’re taking, who we’ll see, and she has to go there and back in the same seat. We live in quite a rural area and I have to travel to Forfar to access the bigger supermarkets. Millie can cope with that in small periods, but she needs to know the plan and how long we’re going to be. But if I was to take her to the bigger stores in central Dundee, forget it, she won’t even get out of the car.” Tori adds that Millie struggles to understand emotions. “She knows the strong ones, but only knows some others through reading them in books. When she was little, Millie didn’t speak about emotions at all, we used to do it with colours so she would say she was having a green day or a yellow day, instead of a sad or happy day.” “Millie picks at herself a lot, and bites her fingernails. She chews and bites when she gets anxious. She has chewing gum at school now, as that’s more acceptable. During times of high stress she picks and fidgets with her fingers. Millie has now started to channel a lot of her nervous energy into something positive. She’s just started crocheting so when she’s at school and finishes her work, she will sit at the back of the class and crochet.” “Millie can be very clumsy, and has lots of sensory issues with her vestibular senses. She trips a lot and bashes herself into things. Other kids are brilliant with her, and she tends to get through these things with humour.”

How the family support Millie

“Michael has Attention Hyperactive Deficiency Disorder (ADHD) and Post Traumatic Stress Disorder (PTSD), so he really understands Millie when she can’t do some things because she’s feeling overwhelmed.” Tori says “Millie needs a lot of emotional support. If she’s in a situation where she’s overwhelmed, she will go mute. Like a doctor’s appointment for example. That anxiety becomes too much for her. I have to have a really good understanding of her needs and feelings so that I can discuss that with them for her.” Tori adds “I stand up for Millie. She had one class in secondary school that she was worried about doing. We agreed that she would give it a go, and she did, but it became very difficult and draining for her. The start and end of the week are the most difficult for her, and that’s when those classes were, so her energy levels were low. Millie started to get anxious and agitated in the class, and went to the teacher with her card so that she could leave. But the teacher told her that he didn’t have time for a temper tantrum. I totally understand that being a teacher can be stressful, but Millie will never forget that, and she’s been chewing it over in her head ever since. She did give the class a go, but later she asked again to have the class removed from her timetable. We worked together to decide what she could say to her guidance teacher to explain her situation. My job as her mum is to prepare her for being an adult, and part of being a grown up is vocalising when things aren’t working and I need to help her to learn that. The next day I had a call saying that she had gone to her guidance teacher and had that discussion. I was really proud that she had gone and done that for herself. She likes to talk things over with me to get things straight in her head first, but I’m glad that she is reaching a point where she can speak for herself.”

How we helped

Tori has received a Take a Break grant on several occasions. “We’ve had the Take a Break grant three times now. That has been amazing, we could never afford a holiday for seven of us.”

“To avoid the anxiety of being away from home, breaks need to be very specific for Millie. What we tend to do is use the grant for days out. Michael can’t come on the trips due to his needs, so it tends to be mum’s magical day out! We make our memories and they love it.” “The money covers travel, entry into the park wherever we go, and then a cinema trip or two on another day with refreshments. Sometimes we might use the money for fuel to go to the beach too, or Loch Tae in Perthshire, where Michael will come because it won’t be as busy and we can go for walks and have a picnic.”  “The first year we went up to Landmark Forest Adventure Park in Aviemore and that was fantastic! There was literally something there for everyone. There were dinosaurs for the boys, a sensory space for Millie, and a butterfly house which Rosie loved. The climbing, the slides, the rides, we went on everything!” “This year we used our grant in the October holidays, and we went up to the Highland Wildlife Park. I was worried because the weather wasn’t as good, but it was another brilliant day! The park was a lot quieter because of the rain, and the tiger had just had three cubs. We managed to get up really close to them, and the keepers were around to answer all of our questions. Gabriel was in his element!”

“I couldn’t have done any of this without the help from Take a Break. It really has allowed us to make some amazing memories.”