Coming to terms with your child’s hidden Special Educational Needs.

Coming to terms with your child’s hidden Special Educational Needs.

Not all Special Educational Needs are immediately obvious. Some are initially hidden, such as dyslexia, autism or ADHD. When parents approach me about their child with SEN of this kind, they are often confused and perplexed about why their child is behaving in a certain way.

Most often, but not always, it is the mother who first sees that there is a problem. In my experience, it is rare that both parents see their child in the same way. Coming to terms with the real situation involves a roller coaster of emotions and often a rebranding of approaches and expectations. At the very least, it requires a shift in family dynamics and a great deal of effort to bring about change. Acceptance of the reality requires time. 

One of the first tasks that I ask of the parents who get in touch with me, is to write down what they believe is the problem, what they would like to happen and some background of the family situation. They have normally told me most of this on the phone, but their recording of it on paper can be therapeutic and sometimes revealing. It also tells me how committed they are to working with me and how accepting they are that they and their child may need help.

I have told them that it will be hard to make changes and sometimes things will get worse before they get better, as the child fights against a new regime. In about eight out of ten cases I don't hear again from the parent who contacted me. In my experience, these are often parents who have not yet accepted that the difficulties that they are experiencing will not just go away. These are sometimes the parents who want me to say to them, 'do this and then this', and all will be ok in x number of months. Occasionally, a non-reply might mean that the parent has seen for themselves what they can do differently. Coming to terms is not purely acceptance of a diagnosis but also realisation that everyday life will change. 

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Grief and acceptance

Recently there was a bereavement in our family and we all dealt with this in our various ways. Some wanted to talk and reminisce about the person, others didn’t wish to broach the subject, at least not immediately. Coming to terms with acknowledging and accepting your child’s special needs is similar to a bereavement, in that it can be a loss of part of the future you expected. There is the hard task of ‘moving on’ in a world that has changed for you. This is made doubly hard if one parent is in denial that their child needs extra help and that they need to seek guidance.

 It is an emotional struggle to understand and accept a child who is different; different from their peers and different from what you expected. The child you thought you were going to have is not there and the gradual acceptance involves also accepting that you, too, have suffered a loss. When one parent won’t talk about this and refuses to believe that their child’s behaviour is anything other than being naughty or being spoilt by the other parent, it can create a tense atmosphere. Nearly all children can sense this tension and it makes them feel unsafe and unsure, thus exacerbating the unwanted behaviours. It is also very hard indeed on the parent who is accepting of the difficulty with their child and trying to find a way forward.

When the ‘labels’ surrounding your child increase in number you can feel like you just want it to stop. Each label means another loss and another battle. Recently I have been looking at old family videos, collecting anecdotes for my son’s best man to use (or not) in his wedding speech. It made me realise that I had not appreciated the precious moments that some of the footage showed- more moments than I expected actually. I have hardly any memories of my two sons, one with special needs and one without, playing with each other and having fun. I remembered friction between them and me peace-keeping. But there it is, the two of them singing with actions, a very funny song that the eldest had learned at Cubs and at the end the youngest jumping into his arms. I don’t remember this. What was I doing? Taking the opportunity to make the dinner or wash up? I missed it and thus missed a chance to build up my emotional armoury to cope with day to day life. Emotional resilience is essential when dealing with special needs to help you handle the stress and the crises. 

Resilience is not just your ability to bounce back, but also your capacity to adapt in the face of challenging circumstances, whilst maintaining a stable mental wellbeing. Resilience isn't a personality trait – it's something that we can all take steps to achieve.

www.mind.org.uk

Some steps that can help

  1. Understand the situation that you find yourself in, talk to others, do some research, share. 
  2. Remind yourself that you are strong enough to accept this challenge. Think of how you have shown this in the past, maybe in the work place, at school or a physical endeavour.
  3. Be a half full glass kind of person. It really helps if you can sometimes hit the pause button and spend time appreciating your child. Take the time to laugh together one on one and as a family. Go on a bike ride, skip, have water fights. The exercise will activate your endorphins and make you feel good.
  4. Be consistent and never give up. 

The process of accepting the child that you have may not be the one you expected can be a hard road full of wrong turns and unexpected potholes. You might blame yourself, you might be scared for the future and then you might feel relief that you can see a way forward. These emotions can repeat themselves as the child gets older, as their needs change or what had worked suddenly stops working. That is why there is no short fix and is why you need your emotional resilience.

In summary:

  • Trust your instincts. If you think something is wrong then it probably is.
  • Take time to enjoy the special moments together.
  • Build up your resilience.
  • Accept that you are going to have to make family lifestyle changes.
  • Be kind to yourself and look after your health.
  • Talk and seek help. SNJ is a good forum for this.
  • Life is never all up or all down. Accept that there will be set backs. 
  • Embrace the life that you have.
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Barbara Follows

Founder at MaMBiC
Barbara Follows is the parent of an adult who had behavioural difficulties as a child. She also has a Masters degree in Emotional and Behavioural Difficulties (EBD) and is an experienced SEN and child behaviour consultant. Barbara has worked in mainstream and special schools in the UK and abroad across the full age range, including five years at a secondary boarding school for teenage boys with severe behavioural problems. Since 2001, she has run the MaMBiC (Managing and Moderating Behaviour in Children) service.
Barbara Follows

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