Children with additional needs: How to make sense of your conundrum child

Children with additional needs

The number of children with additional needs has increased for a third consecutive year to 1,318,300 representing 14.9% of the total pupil population. Maybe you have been nursing a hunch that your child is developing differently, whilst those around you have been suggesting there is nothing wrong with them. Perhaps you already trying to work out what the roadmap for parenting children with additional needs should be.

Whatever the scenario you find yourself in, today we have Aniesa Blore author of Parenting The Conundrum Child to share her unique insights to help formulate the strategies you need to help your child to enjoy life to the fullest.

What are the early signs that something is not quite right with a child that parents should look out for?

I’d tell parents to trust their instincts. When things aren’t going smoothly then it’s absolutely right and sensible to seek advice.

Your holistic, intimate and unrivalled knowledge of your child means you are likely to be able to spot difficulties more accurately than anyone else. And it’s not always big things. Perhaps your child struggles to make friends. They might not go on playdates (or be asked on playdates). They might have difficulties with loud noises or crowded places.

Particularly, they might find it difficult to cope with change – so it’s often at those points of change when parents notice difficulties arising. Like toilet training, or starting nursery, moving home – or welcoming a new baby into the house.

How can parents tell the difference between classic naughty behaviour and something going on on a deeper level for their child?

I love ‘naughty’ kids. They are fun, mischievous, disobedient; they play pranks and like joking about (I’ve basically described myself). Naughty kids push the boundaries but know when to stop. When you say ‘Enough!’ they know you mean it.

‘Naughty’ becomes challenging when it interferes with a child’s daily life. When a child exhibits behaviours which challenge us, they may:

• Refuse parents’ or adults’ requests

• Get frustrated quickly

• Have tantrums that last a long time

• Have tantrums frequently in one day

• Be difficult to discipline (eg they are aggressive or seem not to care)

• Not respond to typical behavioural strategies

It’s important to remember though that what we see as ‘challenging behaviours’ are just a child’s way of asking for help and hence why I prefer the term ‘Behaviours which challenge’ when parenting children with additional needs. They are trying to tell us that they are struggling with something, but they don’t know how to express it, what it is they are struggling with or what they need help with. As the National Autistic Society’s Early Bird course teaches, when children can’t communicate with words, they use behaviour.

If a parent suspects a child has difficulty in the way they learn, or are just worried about them, what should they do? 

By far and away the most important thing to do is to stand up for your child. You are their advocate. You are their voice. Other parents and friends may tell you that it’s all in your mind, that you’re imagining things and being a pushy parent. You must stand up to these false reassurances.

The first thing to do is to speak to people. Go see the health visitor and the GP. Take your checklists, collect the evidence. Ask for a referral to the NHS paediatrician. If your child is at school, ask for a meeting with their teacher or special educational needs coordinator (SENCo).

When you eventually get referred to your local paediatric service, you will be given an idea of the waiting time. Sadly, this is once again dependent on the area you live in. Parents cite the twelve to eighteen months waiting time as a major factor in them paying privately to see professionals – twelve to eighteen months in a little one’s life is just too long.

While it’s important to seek expert advice, how important is the parent’s role as a parent in all this and why?

You know your child better than anyone. You may not always understand them or know the causes of their difficulties, but you have such a wonderful insight into your child, and this is an incredibly valuable contribution towards planning their care and education. Yes, we as parents all need to increase our knowledge and skills, but don’t overlook or underrate your know-how and instincts.

Can you share five golden nuggets of information that will help parents on this journey?

In a complex world, there are several simple rules I want everyone to remember:

  • You know your child best.
  • Always pay more attention to how your child is functioning rather than test scores.
  • Take your time reading any professional’s report and ask questions until you are completely satisfied.
  • Celebrate your child’s strengths.
  • Your focus should be on how to help your child be happy, or happier.

In my book I talk about CAN. It’s a positive approach to helping children, showing that a child CAN be independent and happy, and it sums up my approach to helping children get there: Connect, Achieve and Navigate.

What is your advice for parents of children with additional needs in terms of working with schools?

When discussing schools with families, I always say, ‘There is no such thing as the perfect school.’ Conundrum kids can and do thrive at both state and private schools. They have a way of finding their little tribe, their niche, and slotting in.

All schools have a SENCo, but more often than not, conundrum kids go to school without having any sort of additional needs identified. And so it will be important to seek out your SENCo and work in partnership with them to help identify your child’s needs, and what support from school would help.

A good school will:

  • Screen all pupils when they first start the school for learning differences, or at the first sign that they are struggling
  • Have other pupils in the school with additional needs supported by qualified specialist teachers or TAs
  • Ensure that additional support is an integral part of the school, with excellent communication between therapists/specialist tutors and subject/form teachers
  • Carefully consider what a pupil will miss out on to receive extra help and ensure they do not miss something they enjoy or are good at
  • Have a supportive head teacher and strong senior leadership team
  • Have excellent knowledge of the SEN code of practice and make use of concessions for exams, such as providing a laptop or a scribe
  • Have good pastoral care

Guilt is often a mainstay of parents parenting a conundrum child – how can parents best process this?

The perfect parent does not exist – you are good enough. And a good enough parent is pretty awesome. But you have to start by taking care of you. And taking care of yourself must start with getting rid of any mummy/daddy guilt you may have.

Guilt will not help you be a better parent or carer. It simply focuses all your energy on your perceived mistakes, taking away your time to celebrate joyful moments. Personally, feeling guilty made me more frustrated, angrier, more impatient and more detached from my boys.

Try these exercises:

  • Be kind to yourself. When you learn to be gentle with yourself and shush the voice inside you constantly criticising you, something wonderful happens. You can let go of the guilt and start focusing on solutions.
  • Accepting your imperfections and forgiving yourself for your mistakes doesn’t mean that you don’t want to improve. It means that you are gentle with yourself in the process of becoming the parent that you want to be.
  • Every time you feel guilty, take a pause and make a list of five things that you do super well as a parent. You can write them on a piece of paper or list them in your head.
  • Start a gratitude journal. Every day, write in your journal one thing that you are grateful for and one nice moment that you and your child have enjoyed together.
  • Ask your child’s nursery or school to relay positives about their day via email or the home diary.

What are your top tips for helping children with additional needs develop the skills they need to enjoy life to the fullest? 

I think what’s important to share is here is what I wish people had told me before I had kids. What parenting would really be like. I wish someone had said:

  • There is no perfect parent.
  • You are good enough.
  • You will make mistakes.
  • Trust your instincts.
  • Do more of what makes you happy – and less of what makes you uncomfortable.
  • Don’t rush – enjoy your journey.
  • Play to connect.
  • Tell your partner how you’re feeling.
  • A happy child is better than a clean house.
  • Comparison is the thief of joy (Theodore Roosevelt).
  • Guilt is just a word.
  • Be kind to yourself.
  • Look at the dessert menu first – the best is yet to come.

We hope you found these insights about parenting children with additional needs useful. For more information, you can see Parenting The Conundrum Child for the can-do approach to uncovering your children’s unique abilities.

Wondering what education looks like for children with additional needs are they get older? See the below infographic which gives a snapshot of education for children with additional needs at college level.

 


Infographic Provided By Trinity Christian College

 

About Aniesa Blore

Aniesa Blore graduated in December 1999 with a degree in Occupational Therapy, and immediately started her career working with children and young adults in an eating disorder unit, as well as doing some mainstream paediatric occupational therapy. She loves learning about mental health and has been amazed to see how often it is disregarded. This is where the seeds of The Conundrum Child were planted.

Aniesa moved to London at the end of 2000, where she started off as a locum working for the National Health Service. She then spent six wonderful years at The Children’s Trust – a tremendous charity for children with acquired brain injuries. In 2008, she set up Sensational Kids Therapy, and now employs a team of OTs and therapy assistants to provide Occupational Therapy to schools in and around Greater London and Surrey.

As well as managing her team, Aniesa continues to provide direct therapy to some of the most complex children in the UK, guiding them and their families to greater connection – connection is at the root of achieving and navigating through life. She is an advanced practitioner in Ayers Sensory Integration®️ and has completed two levels of mentorship at the Star Institute in Denver under Dr Lucy Jane Miller. She acts as an expert witness in special educational needs and disability (SEND) tribunals and has provided lessons on occupational therapy for the National Oak Academy.

Aniesa has been married to Zayn for over twenty-one years and is mother to two young men who never cease to amaze her. She still smiles and thinks, ‘I made those’, but has to admit that she and Zayn now enjoy being able to go on holidays without their boys.

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