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Information for Parents

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Published on Tuesday, 18 August 2020 11:32

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This is part of our larger Young People and Fibromyalgia booklet. This section is aimed at parents of those with fibromyalgia. All our publications can be found here.

Information for parents

Some parents have found themselves in difficult situations, with suggestions that they are encouraging their children to be sick or projecting their own symptoms onto them. If you suspect fibromyalgia it is prudent to do your own research, so that you can ask the right questions and request a referral. If you are concerned or feel you are being dismissed, remain cool, calm and assertive while requesting a referral to a community paediatrician.

It is not uncommon to have visited consultants in various departments before arriving at a diagnosis, as different symptomsare often diagnosed individually. Some doctors are cautious about labelling a young person with fibromyalgia. This is because many young people can get better and doctors do not want a young person to see themselves as having an adult condition they may notrecover from. For this reason doctors tend to use terms like diffuse idiopathic pain syndrome (DIPS), soft tissue rheumatism or chronic pain syndrome instead. If the symptoms carry on into adulthood then a diagnosis of fibromyalgia might be made at a later date.

Activity management

Young people should be encouraged to be as active as possible while maintaining their symptoms to a level they can cope with. This level of activity will differ from person to person and is important not to hold your child back if they wish to attempt new levels of activity. This can be difficult from a parents’ point of view as you don’t want to see your child in more pain, but it is essential that the child learns their own boundaries and what level of activity they can comfortably sustain before causing a flare up of symptoms. A flare is not something to be afraid of it is something to be learned from. In this way the child will learn to pace themselves through the day, which is one of the key management skills to coping successfully.

Communication

Talk to your child and don’t withhold any diagnosis from them. Explain the reasons given for their symptoms simply and clearly and what treatment can be offered to improve the quality of their life. Often it can be liberating to know that the symptoms are not their fault, there is a reason for them and something can be done.

Coping with any kind of illness, especially involving a child, can cause emotions to run high. When it comes to expressing feelings some children talk about how they feel almost incessantly whereas others withdraw into themselves and do not want to talk. As a parent, you know your child and can judge how best to approach the situation to encourage your child to talk constructively about how they feel. Jackie found communication difficult because her daughter did not want to acknowledge the diagnosis of fibromyalgia. Denial is a typical first reaction and often associated with withdrawal. Jackie approached the situation by treating her daughter as normally as possible, asking how she felt but not making a fuss.

Try to keep family life going as normally as possible. The temptation is to protect your child from any further pain, especially if the response from the medical profession has not been sympathetic. While it is important that your child feels supported and believed, being overprotective can be counter-productive. Kirsty found that her daughter wouldn’t tell her when she was in pain because she thought her mother would stop her engaging in the activities she wanted to do. Children can be quite resilient and it is important to be led by them as to what they can and can’t do. As discussed previously children need to discover their own boundaries and learn to pace themselves, which will involve flare ups along the way. Allow your child to be as independent as possible with you there as a backup support when they need it. Try not to constantly ask how they are feeling, but be prepared to listen when they need to talk.

It is also important for you as a parent to have somebody outside of the situation to talk to and to offer you support when you need it. You could find yourself dealing with all kinds of emotions like guilt, the desire to protect, anger and frustration. You need to express and deal with these emotions in order to be in the best position to support your child. Do not be afraid to seek help from a support group or a medical professional.

Communication between parents is particularly essential if you are separated. Children often comment that the parent they do not live with doesn’t understand because they don’t see them living from day to day with the pain and fatigue. As you know the symptoms of fibromyalgia are invisible and can undulate over time, so if you’re only seeing the child at weekends the symptoms could vary quite dramatically and come across as quite mysterious. Try to ensure that your partner has as much information as possible and a clear picture of the current situation.

How to implement special arrangements for schooling

If fibromyalgia has an impact on your child’s ability to cope in the normal school setting, then they are classed as having a ‘special educational need’.

Schools have to abide by the SEND code of practice: 0 to 25 years which explains the duties of local authorities, health bodies, schools and colleges to provide for those with special educational needs under part 3 of the Children’s and Families Act 2014. The 2001 SEN Code of Practice still applies for those who have a SEN Statement under part 4 of the Educational Act 1996, rather than an education, health and care (EHC) plan under the Children and Families Act 2014.

Under the Equality Act 2010 it is unlawful for any education provider to discriminate between pupils on grounds of disability and other criteria. They are expected to do all they can to meet your child’s needs and to make ‘reasonable adjustments’. The Act includes the following points:

• Schools will be expected to provide an auxiliary aid or service for a disabled pupil when it would be reasonable to do so and if such an aid would alleviate any substantial disadvantage that the pupil faces in comparison to non-disabled pupils.
• Adjustments should be ‘anticipatory’ but it is recognised that organisations cannot be expected to anticipate the needs of every imaginable disability.
• Legislation applies to all pupils including prospective, attending and absent, and former pupils who have a continuing relationship with the school. It applies to all student services.
• An education institution should not treat a disabled person ‘less favourably‘ for a reason relating to their disability.

Each school has one person Special Educational Needs Coordinator (SENCO) responsible for ensuring pupils with special educational needs are catered for and any necessary special arrangements are made and carried out. School Action is the term used for making and recording these arrangements known as an Individual Educational Plan (IEP).

If academic progress is not made under these arrangements School Action Plus comes into effect and external support services are used for further assessment and recommendations.

Normally, keeping a good dialogue with the school means your child receives the consideration needed to be able to cope with school.

Other assistance is available to parents through the Local Authority Parent Partnership Service or Independent Panel for Special Education Advice (IPSEA).

You do have the right to request a statutory assessment of your child’s needs and to appeal to Special Educational Needs and Disability Tribunal (SENDAT). This should only be used as a last resort.

Websites:

www.ipsea.org.uk

www.gov.uk/children-with-special-educational-needs/overview

www.gov.uk/government/publications/send-code-of-practice-0-to-25

www.gov.uk/government/publications/equality-act-2010-advicefor-schools 

Summary

• Maintain a positive outlook.
• Be proactive.
• Be supportive of your child but do not let the symptoms affect your normal family functioning.
• Try to maintain the usual routine (including school) as much as possible.
• Encourage your child to continue as many normal activities as possible.
• Remember children need to be around other children their own age so they do not feel left out of the social group.
• Encourage your child to maintain friendships.
• Do not be afraid to seek advice from health professionals or a support group.