What makes a preemie parent angry?

What makes a preemie parent angry?

  • Sweeping statements and generalisation?
  • No accounting for parents views?
  • Misleading newspaper headlines?

Or perhaps all three?!

Today on the Smallest Things Facebook page we shared a newspaper article with the leading title “Premature children should be treated as ‘Special needs’ pupils”. We asked you for your thoughts, and in the main you were angry.

“I totally agree that Teachers should receive relevant training on Prematurity (as should a lot of Healthcare professionals for that matter!) but to class a child as special needs based on Prematurity alone seems ludicrous. Surely each child should be assessed on an individual basis.”

“All children learn at and in different ways, every child should have the right to the schooling needs as an individual, not because they were premature, my eldest was a premmie and she didn’t need extra help, my second was a preemie and she needed extra help. It all depends on being an individual instead of being institutionalised into one way of thinking”

“Surely every child deserves to have their needs assessed on an individual basis. This is such a generalisation!!!”

“Each child is different. Your child’s strengths and weaknesses become apparent as they grow and develop and labels are given too often these days.”

“No way! Only one of my three prems is behind in development. They should be assessed as individuals”

These are only a small selection of your comments; you can read all the responses we have received and add your own by clicking here.

In a statement, Bliss Chief Executive Caroline Davey has said:

“We know from previous research that children born prematurely are at greater risk of behavioural and learning difficulties, and we think it is absolutely essential that, as this research suggests, children born prematurely should have more support when starting school, and that teachers should be adequately trained to deal with these children’s needs. 

“However, we continue to believe that it is up to parents to decide if it is right for their child to delay starting school. Every child born prematurely has different needs based on a range of factors, and while one child may be ready to start school with their peers, another may not. Our evidence supports this, and we are confident that with the right care at birth and support throughout their development, children born premature can reach their full potential.”

It is encouraging to see that the response from the UK’s leading premature baby charity echo’s so many parents views and is testament to the work that they do in supporting families and facilitating parent choice.

BLISS

As a preemie parent and as a children’s occupational therapist I have my own personal views.

Firstly; misleading headlines cause confusion and upset (although they do of course sell newspapers!). That  “premature children should be treated as ‘special needs’ pupils by teachers” is not a recommendation and does not feature in the original research which can be read here. It is nothing more than a headline.

Secondly; as a parent I know my child, I know our family and I’d like to think I’d know what is best for my son born at 30 weeks…. but, I second guess myself, wonder about the ‘what if’s’, and crave the reassurance that I am doing the right thing. For these reasons I am so thankful for the work of organisations such as Bliss and Summer Born Children for the support and advice they offer to parents of babies born to soon.

PREM

 

And finally, as an Occupational Therapist I understand child development and neonatal care. I know how critical early intervention can be and recognise that every child is unique. I have advocated in my professional life for all children born prior to 32 weeks to be followed up in their infant years, each assessed as individuals and given appropriate support, if required, according to their own individual needs.

But you know what – premature babies are special!

I will leave you with my favourite response to today’s headline… 

“I’d like them to do an article on the resilience and determination of the premature child….Definitely worth reading about that. Mine is feisty, determined and makes me proud every day.”

7 thoughts on “What makes a preemie parent angry?

  1. keepsmeoutofmischief

    As an Inclusion Manager in a large school and mummy to two premmies, that last bit hits home. I often comment on how determined and stubborn my own children are, despite both of their parents being pretty laid back and I’ve noticed the same thing at work. My theory – if they didn’t start their time in this world being determined and stubborn then they may not be here now. That’s what I keep telling myself when they’re being stubborn anyway!

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  2. DRJG

    Every child is an individual and needs to be treated on individual basis. NICE is currently working on the guidelines for the developmental follow up of premature children. There is a need for greater engagement from the DfE to ensure that the needs of these children, as indeed all children, are properly met when they start school. Early intervention , if required, is crucial to future success. Every premature child has a different, unique journey and their needs are
    individual. As these children are already disadvantaged by their prematurity and disturbed early start, it’s very important that their further development and education are well-matched to their needs. It’s not about making allowances, but appropriate challenge and high
    expectations to give these children the best chance in life. For many, real problems can start with starting formal education. Without the right early provision, these children can be doomed for life. Therefore any guidelines for the developmental follow up of babies born prematurely, must include a reference to educational provision and for that the engagement from the DFE is needed. Ensuring best start has an impact on future success and the level of spending and provision in later life.

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    1. DRJG

      Greater awareness and individualised approaches to follow-up care and provision are positive, but it is damaging to attach generalised labels to children who are already disadvantages by early birth. It’s not a case of “one size fits all” as each individual is different. There is very little understanding of prematurity by the government, having already engaged in conversations, and the general public. Lack of relevant training for teachers, educational psychologists and other therapists working with young people means that these professionals have little understanding of issues surrounding prematurity and risk factors associated with early birth. This can have an impact on early diagnosis of potential problems for early appropriate intervention. As an expert on learning and education, I feel that it is crucial to have high expectations of these children, just like of any other children, to help them fulfil their potential. Already disadvantaged by early birth, they should not be disadvantaged further by starting school late (out of chronological year). Keeping expectations high and the right level of challenge are what will serve them best in the future. With advances in neonatal care and medical science resulting in increasing survival rates of extremely premature infants < 26 weeks gestation period, greater focus is needed on improving morbidity rates, and life chances of these children. Therefore the time is right to talk about best educational provision and the right early support to minimise potential widening of the gaps.

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