How does the Marshall-Smith Syndrome affect daily life?
How does the Marshall-Smith Syndrome affect daily life?
MSS influences almost all daily activities. Not just for the person who has this syndrome, but also for the parents and other carers. Much help is needed with personal care, movement and communication. All daytime activities require constant attention and support. Participating in society is challenging as it is often not equipped to deal with people who have a physical or intellectual disability.
For school and day care employees it is good to know more about MSS. You can give them a patient information brochure to read. If you require specific information, please contact the Marshall-Smith Foundation through info@marshallsmith.org
Daily support
When a child with is MSS is around 1.5 to 2 years old, a remedial educationalist can already determine which support is most suitable for the child. A remedial educationalist is a carer who is specialized in the development and behaviour of children.
When a child lives at home
Some children with MSS live at home, others live in special care facilities. This depends on how much special care and support is needed, but also on the preference of the parents and how much care they are able to take upon themselves.
Children living at home can start going to a special day care facility from 2 years onward. There are different types of day care in different countries, for example:
- A specialized (medical) children's day care centre;
- remedial educational day centres;
- children's rehabilitation centres.
Which form of day care is best suited depends on the child's (physical) symptoms.
When a child doesn't live at home...
Children living in special care facilities are offered day care there as well. At a day centre for children with serious multiple disabilities, the groups are formed similarly to those in primary education. They are formed based on age as much as possible, but the professionals will also look at a child's ability when forming the groups.
Day care and housing for adults
Almost all individuals with MSS live in supported environments when they reach adulthood. Sometimes this means a small transition when the person has lived in a special care facility as a child. For others who have lived at home, the transition might have more impact. Various therapists connected to an institution for adults with an intellectual disability, prepare the young adult for the transition into a new living environment.
Questions about upbringing and daily life
Even with a lot of knowledge and experience, raising a child with MSS can be a challenge. You might have questions like: ‘How do I know what is normal behaviour and what is not?’ or ‘How do I make sure I give my other children enough attention?’
When your child lives in a special care facility, there is usually a network of carers available to assist you with your queries. When your child lives at home or when you do not yet have a network of special healthcare providers, don’t wait around with unanswered questions. There are many organizations that can support you and your family at home. Your general physician can help you find these organizations.
