PARENTS

Children With Special Needs: Following Up Your Concerns

14/08/2014 16:50 | Updated 22 May 2015

Children with special needs: Following up your concerns

Until recently all children were offered health and development reviews at around one year and two and a half years, but these are no longer routine in most areas. If you have any concerns or would like some reassurance, you could ask your health visitor for a check. They can assess your child's motor skills, hearing, speech and language development, social skills, cognitive skills, self help (for example, toilet training, self- feeding) and how they play and behave.

The health visitor will have access to a number of fairly simple tests – all play-based - which will give a basic profile of your child's strengths and weaknesses. These may include the Schedule of Growth Skills (SOGS), which is a general development check, or the Checklist for Autism in Toddlers (CHAT) which highlights any markers for autistic spectrum disorders (it does not represent a diagnosis).

If there are areas in which your child is not meeting the age-appropriate expectations, he or she may be referred to a specialist or a follow up visit might be arranged a few months later to check if your child has caught up.

"The health visitor is usually in the best position to do an initial check and there are simple tests but parents may need to specifically ask for them," says Dr Scott-Jupp, Consultant Paediatrician at Salisbury District Hospital.

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Ultimately your gut instinct is important. As a parent you are the expert on your child, spend the most time with them and have the greatest concern for their welfare.

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"Pressure on services means that more than ever parents' concerns are important," says Dr Scott- Jupp.

If you are worried about your child, you should ask for help.

Finding out more: Your GP and specialist referrals

Your GP will listen to your concerns, may be able to reassure you and offer advice, and can make appropriate specialist referrals for your child.

Depending on your child's age, their level of understanding and the nature of your concerns, you may wish to discuss your thoughts privately with the doctor before taking your child to an appointment.

It is a good idea to make a note of all the things you would like to discuss before the appointment.

Talking about your child's problems, or suggesting that you think there might be 'something wrong' with them can be very upsetting, and you may otherwise forget things you wanted to mention.

Sometimes parents feel their concerns are being dismissed by the doctor – particularly if the problems being discussed aren't evident in the appointment. You may usually be tearing your hair out at your child's unusual behaviour, only to find that, ironically, they are a walking textbook of typical developmental during your 10 minute appointment.

Keeping a diary of symptoms or unusual behaviour and any concerns teachers, childcare workers or family members have raised will help show that you are well-informed and that your concerns are not a flash in the pan and will give the doctor a clearer picture of your child's needs.

If your GP feels that your concerns warrant further investigation your child will be referred to a specialist who can investigate your child's difficulties in detail and make a diagnosis if appropriate.

"The doctor should take your concerns seriously, particularly if the health visitor also recommends investigation," says Dr Robert Scott-Jupp. "Try not to worry though as often further assessment is just about reassuring parents that children are just slower in some areas and will catch up."

Depending on the condition suspected the next stage may involve a number of assessments and tests, observations and interview with you and your child. A number of professionals may be involved in a multi-disciplinary team. Many types of special needs – and in particular developmental conditions for which there are no specific physical tests – are investigated by a team of professionals with different areas of expertise before the final report is discussed with parents.

Your child may be seen by a paediatrician (possibly a Developmental Paediatrician if developmental disabilities are suspected), a Child Clinical Psychologist, an Occupational Therapist (OT), Speech and Language Therapist (SALT) or Physiotherapist. In many areas these services are combined in a Child Development Centre (CDC ) or your child may be seen at your local hospital.

The number of people involved, and the time it takes for all the necessary reports to be knitted together into something conclusive can feel frustrating but, says Dr Robert Scott-Jupp, this well-rounded approach is important:

"Often we need to rule certain things out – a hearing problem perhaps if there are concerns about speech or social skills – and the expertise of all the members of the team is important.

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As the investigations proceed parents should be given a good idea of what is going on where the assessments are leading, but there should always be a clear summary at the end of the process.

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If your child is at school they may also be observed in that setting by an Educational Psychologist who will also prepare a report on your child. For more information see our dedicated section on special needs at school.

What if you don't agree with the doctors, or don't understand?

However clear a child's needs may seem to his or her parents, sometimes progress can be very slow, professionals may disagree with each other about diagnoses, or parents may be told their child does not have special needs despite them being convinced they do.

If you suspect your child has a particular condition but feel your concerns are not being appropriately addressed, you could contact the relevant charity or support group for advice, or try Contact A Family, a charity which supports families whose children have any disability.

Most of these organisations have helplines operated by parents who have been through the diagnostic process and should be able to advise you.

As with many things, persistence often pays off. Parents often feel they need to chase referrals, appointments and reports to ensure things keep moving.

Sometimes parents are simply over-whelmed with the number of investigations, professionals and jargon-filled reports involved, and feel they no longer have a handle on their child's assessment and treatment.

A charity like Contact A Family should be able to help make sense of the process. "We ask the parents what they think," says branch manager Rosie Noble. "Sometimes parents forget their own instincts but we try and make sure they are still their child's key-worker. We can help them decipher the information and find out what they need to know."

Useful links:

What parents say:

Helen, mother of Freddie, 10, says:

"I felt very uncomfortable pushing for appointments and diagnosis, chasing things up. Maybe I was taking services away from other people who needed them more. Then I realised if I didn't advocate for my child no-one would. It is a parent's job."

Frances, mother of Ruby, three, who has autism, says:

"It is very hard always painting your child in a negative light. I sometimes even felt I was exaggerating when I knew I wasn't. I began to worry the doctors might think I had Munchausen by Proxy syndrome. You have to do it though."

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