The holidays aren’t joyful for everyone

DR RADICA MAHASE

In Trinidad and Tobago we love to boast about our "liming culture." We are proud to say Trinbagonians know how to have fun, and usually that fun revolves around loud music, lots of food and groups of people.

For many individuals who are on the autism spectrum, both children and adults, these things can bring much discomfort and trigger meltdowns, mainly because of their unique sensory issues. Many people with autism may be over-sensitive or under-sensitive to certain sounds, smells, textures, the environments and so on. In some cases, these may trigger meltdowns, might be uncomfortable or even painful. Consequently, the holidays are not always a joyful time for many people with autism and other special needs.

Cindy, mother of an 18-year-old who has autism, says: “When my daughter was younger she hated Christmas. From the time she saw us putting up the Christmas tree or the lights she would get angry and cried so much.

"We never understood why. We thought that she didn’t like the decorations so we kept changing them. We thought maybe she didn’t like the colours of the lights so we kept changing those.

"When her cousins came to visit, she never wanted to play with them. She used to hide in her room and we would get angry because it looked so bad that we had people coming over and she didn’t want to lime with them.

"It was only after she was diagnosed and we started learning about autism, and she started therapy, that we really understood how sensitive she was to so many things.

"Her therapist helped us to figure out that it wasn’t the decorations, it was actually all the lights we put up that gave her headaches and hurt her eyes. That when her cousins came over, they were very loud and she got headaches from all the sounds and loud noises.

"Once we understood that, we were able to put things in place to make her more comfortable. We moved the Christmas tree from the living room to outside on the porch where she didn’t have to see it all the time. We decided that the lights will only be turned on for an hour when she was in her room, so that her brother and sister could still feel ‘Christmassy’ without her feeling uncomfortable or getting headaches.

"When we invited our relatives over, we lime downstairs and limit how many of them come upstairs so that she still had a quiet space. This year, we will just have some close family over and we already started preparing her for their visit – telling her who are coming and when. As much as we want her to socialise, we also let her know that she doesn’t have to be with them all the time, that it’s okay to just say hello and then stay in her room where she is comfortable.

"When relatives invite us over and we go, I always pack something for her. Since my daughter is very sensitive to textures and only eats certain food, I don’t expect others to cater for her, so I always pack food that I know she will eat. In this way, she is not left out. My parents, her grandparents, know about her eating habits and they always cater for her needs, but other relatives don’t know. Sometimes we don’t visit certain relatives’ homes because we know that they will have a very loud DJ set up and it will just be too much for her.

"If it is a real big lime, then we don’t take her, because she hates the crowds. And whenever we are going somewhere, we let her know. We always tell her before. We have learnt from experience – I remember when she was eight years old and we woke up one morning and decided that we were going to visit some friends and we packed all the children and left home.

"We didn’t tell her and she started fussing from the time we left the house. We didn’t take it on, thinking she will settle down eventually. That day was really difficult. She had massive meltdowns and eventually we had to go back home.

"When we spoke to the therapist, we realised that it was because we just expected my daughter to adjust to a new routine, to just fall in with everyone else. We didn’t give her a chance to understand that we were doing something new.

"Since that time, we have learnt to include her in everything, explain everything to her, try harder to figure out what she is comfortable with. "Most importantly, we have learnt that we can have our own way of celebrating Christmas, a way that she feels happy, because when she is happy, when she is not getting meltdowns, that’s what make the holidays enjoyable – not the big lime with all the noise and plenty people.

"We want all our children to be happy and to enjoy the holidays and if that means celebrating different from everybody else and doing our own thing, then that’s okay. We know now that the holidays might not be enjoyable for her if we go with the usual ‘Trini liming scene,’ so we adapt and make it our own thing so she can enjoy Christmas too."

Radica Mahase is the founder/director of Support Autism T&T