Occupational Therapy

Occupational therapy aims to help people with Fragile X Syndrome (FXS) thrive in daily life. Occupational therapy provides advice and techniques to support good functioning in different environments, including at home or at school. This, in turn, can help reduce anxiety and help those with FXS carry out daily activities more easily. Occupational therapy can help with a variety of activities from self care (like brushing teeth) to productivity in school (like writing). The areas covered by occupational therapy may also link to physical therapy.

Occupational therapy covers a broad spectrum so the help given will be individualised based on a person’s needs and goals. If you meet with an occupational therapist, it is likely they will carry out an assessment looking at motor skill development, perceptual skills, communication skills, routines and habits. Occupational therapists can also help with supporting sensory processing, or regulating sensory input. Sensory information can be overwhelming and be a barrier to someone’s functioning; occupational therapies can help people with FXS focus on specific senses. Equally they may use comforting sensations to help people with FXS to focus on their task. Please see our section on ‘Sensory Processing‘ for more information.

This section covers:

Occupational Therapy at Home
Occupational Therapy at School

Five Steps to Function

Occupational therapy aims to help your child function to the best of their abilities. The following should be considered when completing activities with your loved one.

Promoting independence: encourage them to take part in activities, let them take responsibility for their actions.
Developing skills: activities that are familiar become more fluent and intuitive. New activities can be tricky and overwhelming they may need help to problem solve and learn to adapt.
Increasing confidence and self-esteem: when your loved one tries something new and succeeds they gain confidence. This sense of achievement helps them when they try new activities as they can be reminded of their other achievements.
Making activities meaningful: if an activity is meaningful it helps motivate them. Aim to make the activity around their interests to make them more enthusiastic. If possible, talk with them about what they want to achieve and set goals together.
Having fun: people are more willing to take part in activities that are fun. While new situations can be scary, stay patient, and encourage them to keep trying — add an element of fun!

Dressing

Getting dressed is a key part of self care and developing independence. There are lots of aspects to getting dressed — more than most people initially think. To get dressed a person must be able to use active movements, use coordination, use balance, have control of their hands, be able to reach and release, be able to focus on a specific object, be able to choose items of clothing, respond to different sensations, and be aware of their body parts.

If possible, start introducing how to dress when they are young and establish a routine. First teach them to undress, before moving on to how to dress. Create a routine by doing it at the same time and the same way each day so that the child knows what to expect. For example, socks off first. You can use a visual guide, or social stories, to help as reminders. Minimise distractions — try to tackle this training at a time of day that is less busy and where you can focus only on dressing. Use clear instructions by speaking slowly and using simple language. If you are helping them, describe what you are doing: for example, “I am putting your right foot into your right trouser leg”. Start introducing pauses to let your child have a go: for example, place their hand in the shirtsleeve hole and allow them to push their arm in on their own. Encourage them as much as possible and praise their efforts!

When choosing clothes, make sure they will not limit movements. Also, be aware that some people with FXS are sensitive to texture and prefer certain fabrics. When teaching them to dress, choose clothes that are easier to put on, for example loose, short sleeves, no buttons. Start teaching with larger, outer clothing and work inwards as they develop their skills and understanding. Help them identify the back of their clothing by showing them the label or using coloured thread, if they do not like the label sensation you could mark the back with a fabric pen. Lay clothes out in front of them so they can practice sequencing, showing where they start if needed. If they have reduced mobility, front opening clothing may be helpful.

There are more techniques that can be used including Five Steps to Function: Dressing Skills.

A drawing of colourful items of clothing on coat hangers hanging on a rail

Brushing Teeth

Brushing teeth involves a lot of senses and some children can find the feeling of brushing and the taste of toothpaste difficult. Below are a few strategies to help make things a bit easier.

First, try to make sure your child is comfortable before trying tooth brushing. Give them a moment to relax rather than trying to teach them in the tumult of a school morning. You can massage their cheeks lightly to get them prepared for the sensation of brushing. Additionally, you could try oral stimulation with a finger toothbrush to help decrease sensitivity.

Use a visual guide to help your child anticipate the steps of brushing their teeth. You can guide them to be in front of a mirror so they can see what is happening. If bright light is a trigger for your loved one, you can reduce the light in the bathroom.

Using a visual timer will help them understand the length of time they have brushed and how long they have to go. If hearing the sound of tooth brushing is difficult, you can try to play music or put headphones on your loved one. If the toothpaste flavour is tricky, you can try different flavours or a flavourless toothpaste. Start with small amounts of toothpaste and build up. Let your child feel and play with their toothbrush to get used to its sensation. Soft bristles may be better tolerated at the beginning.

There are tooth-brushing apps which you can download such as Brush DJ which plays 2 minutes of music for the length of brushing and allows daily reminders to be set. Disney Magic Timer uses an animated toothbrush to encourage children to brush for longer, revealing Disney pictures as time goes on. Brush Up aims to direct children when brushing their teeth: children can see themselves on screen next to the character and earn rewards with their selfie assessments.

An image of a red toothbrush, a pink toothbrush and a blue toothbrush in a glass

Mealtimes and Food

Make sure your child is comfortable at the table, if they are focussing on sitting or feel an uncomfortable sensation, they will struggle to give attention to their food. Mealtimes can be a great opportunity for them to learn about acceptable behaviour, listening, talking and eating; so making sure they are not distracted is a great start.

Think about the utensils you use. Cutlery with textured handles may be easier for your loved one to hold. Additionally, shorter handles can be easier to control. Using a plate with a raised edge may help reduce spillage or food sliding off the plate. You may also find it helpful to use a non-slip place mat underneath so they know where to put their plate, and to prevent it moving. Let them practice cutting soft foods, like bananas, before moving onto harder foods. Be patient and let them practice every day.

Let your loved one explore foods by comparing smells and textures. Encourage them to describe the appearance of different foods. You may want to set up activities with food, such as toy trucks in a bowl of oats. Involve your loved one in the cooking process. Lots of people with FXS love to be helpful — letting them stir or add ingredients is a good way to expose them to food without the pressure of eating it.

To increase the range of foods your child will eat, build up the range of food slowly. Research suggests children need to try a food or see a food at least 10 times before they accept it. Try to introduce food in a positive way: start with presenting the food but not putting pressure on them to eat it. Additionally, don’t overload them with lots of new food at once — serve a new food alongside safe foods you know your loved one is familiar with and likes. If possible, try to eat as a family/with your loved one so they can see you eating and trying new foods too. If they find new food overwhelming, you can put it on a side plate apart from their other food so that it does not feel imposing.

Source: Mealtime Support – Occupational Therapy

An image of eggs, milk, nuts, broccoli, oats, raw chicken, raw salmon, spinach, cheese, and brown bread on a kitchen counter

Occupational Therapy at School

Writing
Reading

Your child may need extra help settling in at school. An occupational therapist will be able to recommend strategies to help. For example, they may:

Advise teachers and educational staff on dealing with difficult situations that may arise
Provide tools to make the classroom situation more beneficial for learning (for example, a sensory cushion for seating, or advise where your child should sit to avoid distraction)
Suggest a program for your child to join (for example, a handwriting program) or additional resources which might aid learning
Discuss the use of fidget toys to aid your child’s concentration or comfort

The help an occupational therapist can provide varies a lot, so if you think this may be useful, talk to your child’s teacher.

It is important that school understands the heightened sensory awareness your child may have. An occupational therapist can help explain the best classroom environment which will aid your child’s learning. This can be simple things such as your child always sitting in the same place. They can explain the use of noise-cancelling headphones to help with concentration; or how chewing a straw might help focus attention.

Fidget toys are items which can be played with at the same time as listening to a teacher. For example, there are textured balls to roll in one’s hand, plastic shapes to squeeze, bean bags to fiddle with or plastic poppers to push. These small toys can help your child concentrate, as long as they are used in a way agreed with the teacher. There are a lot of online resources about fidget toys, such as Top Tips for Choosing Fidget Toys at Home and in the Classroom. Additional information can be found in the section on Sensory Processing.

Writing

Handwriting involves lots of aspects that can be tricky! This means difficulty writing can have lots of causes, including difficulty with fine motor strength, grasping patterns, fine motor precision, visual perception, sensory processing, attention or strength. An occupational therapist can investigate to find the underlying cause of the difficulty with handwriting.

Some techniques/tips for developing writing skills:

Tap into your child’s interests. For example, if they like sports, focus writing and drawing around sport themes.
Use colours to make handwriting more interesting.
Try different writing surfaces and utensils such as pencils, crayons, chalk, felt tips or drawing in sand.
Start with pre-writing skills such as practising zigzags or circles before moving onto letters.
Then move onto tracing to encourage purposeful movements. For example: place stickers on the page and ask them to connect them with a colourful crayon.

More information can be found from the OT Toolbox on Activities to Improve Handwriting.

Reading

As with other topics covered, difficulty reading can have many underlying causes including difficulty with comprehension, memory issues, limited vocabulary, lack of motivation, poor focus and visual processing issues. Occupational therapists can dive deeper into the aspects affecting your child’s reading.

Here are some examples of how they may help: