Coming to terms and accepting any devastating change in circumstances is an incredibly painful and long-term period of adjustment. When the focus of those changes is one of our children due to a life-changing injury or illness, a disability or a birth abnormality, parents will often feel lost, frightened, helpless and desolate, and  they will struggle to believe that things will ever get better.

I know this because my son, Toby, has complex medical needs and profound and multiple disabilities, and he spent most of his first six years in hospital, critically ill, and not expected to survive childhood. I barely left his side throughout those difficult years, staying in hospital with him as a resident parent. I also had two other children, so family life was often fractured and difficult. Even when Toby was well enough to be at home, he needed constant, round-the-clock care and supervision. From the day he was born, our family landscape changed irrevocably, and we had to find new ways of doing things and create a new sense of normality that worked for all of us.

Getting through the “coming to terms” process is one of the toughest things you will have to cope with as a parent, and the chances are that, like our family, you’ll get very little or no warning that things are going to be very different from now on. Accepting change and adapting to it is always difficult, but it is a process and you will reach a point when things do start to get better and feel more manageable.  I didn’t know it way back then in the early days of Toby’s challenges, but there are steps you can take to make the whole process a little bit easier. However, it’s never going to be painless.Here are nine things I didn’t know then, but I wish I had.

1.   Looking after yourself

Find a way to look after yourself. If you burn yourself out your child is going to be in even more trouble.

Now that’s a big ask right now because all of your instincts will be screaming at you to put every ounce of energy, care and resources into helping your child. You may also be dealing with an overwhelming mix of emotions, and you are probably having hours, days or weeks when you feel all over the place and very vulnerable indeed.
Yvonne Newbold
Make sure you carve out time for you. Even if it’s only 10 minutes once a day to have a relaxing bath, or to sit outside and breathe in nature, or to listen to some calming music – find a way to incorporate some “me” time every day. The more time, the better. You need time to step back, reflect and begin to process all that is happening at the moment.
Recharging your own batteries is not an indulgence; it is essential. You will be no use to anyone if you continually try to run on empty. Also acknowledge your emotions and let them out. Go with them, cry, rant, wallow or rage – find somewhere safe and out of earshot of the children and give in to those negative feelings. I used to sit in the car in the dead of night and cry my eyes out sometimes.
Letting all those feelings out is cathartic, and it’s much healthier than bottling them up, trying to be brave, and putting on a bright face when you’re falling apart inside.

2.   Don’t forget your other children

What is happening to their sibling is also life-changing for them . They may be feeling a huge array of difficult emotions that they might not have the vocabulary to explain. And even if they do, they may feel they can’t add to your burden by voicing them directly to you. If they are already at school, make sure that the teaching staff know what’s happened as soon as you can – they need to be alert to any changes in mood or behaviour so that your child can get the support they need.

Yvonne Newbold
Certainly in the first few months, the lion’s share of your time and your thoughts will be with the child in difficulties. however it’s so important to find time to make all your children feel special and to make regular time for them individually.
It is also important that things are explained to them in age-appropriate ways The truth is always easier to deal with than guessing or allowing a child’s imagination to fill in the gaps of knowledge.  Children understand far more than we often give them credit for, and they will be able to sense the emotions in the adults closest to them, such as fear, worry, sadness and despair, no matter how much effort you make to to hide them.
Children will need a lot of reassurance that they are still loved, and to feel as safe and as secure as possible. It can be helpful to enlist the help of any other adults in your close circle who both your and your children trust, who may be able to provide some consistency, someone to talk to, as well as some carefree and fun childhood moments too.

3.   It is What it is

Find a way as soon as you can to accept whatever has happened. Wishing and wanting and filling our thoughts with all the “if onlys” and the “what ifs” will lead nowhere, other than deep unhappiness. Many of us will always remember a time when we thought that this sort of thing only ever happened to “other people”, and when something like this does happen to our family, it can feel as though we have been forever set apart from everyone else.

Try not to compare your family situation to others, what has happened to your family may feel desperately unfair and hard, but the sooner you can find a way to accept that this is the way it is, the easier everything will become. Try and find some positives in things that happen every day, there are always blessings if we look hard enough.

Yvonne Newbold

Your children need you to lead them through this too, and you can and you will. You have deeper reserves of resilience and resources than you ever thought possible, and you are much stronger and more capable than you think. There will be plenty of good times, happy times. joyous times ahead, and things will get easier as time goes on.

Whatever has happened is not the end of the world. It may signify huge adjustments that need to be made, but it will also provide experiences and challenges that will enable you to develop strengths you didn’t know you had, and give you a different perspective on the things that really matter.

 

4.  Find a support network

What is happening to you and your family is likely to be outside the experiences of your immediate friends and family, and that can make it very difficult for you to be able to talk openly about your own deepest fears and concerns regarding your situation or share your feelings easily.

As soon as you can, try and find other parents who have been through, or who are going through, similar challenges, and reach out to them. They may also be in hospital with their own children, or you may find them on a social media platform such as a specific closed Facebook Group, but one of the best pieces of advice I can give is to find these other parents as soon as you can.

Some of them are likely to become life-long friends and will understand what you are coping with better than anyone else will ever be able to. Without my tribe of other SEND Parents I would not have coped at all.

Yvonne Newbold

They don’t judge, they don’t give unsolicited advice, they don’t take it personally if you have to pull out of social occasions at the last minute. Other parents in the same boat will always be there for you. They will understand when you need a hug, a cuppa or even another glass of wine without you having to explain anything.

There is an immediate affinity among parents like us; an unspoken connection and acceptance, and together we can always find a way to pull each other out of the darkest, deepest sense of despair that will occasionally come and visit you. There is no pity, no patronising and no one-upmanship with this group of parents, although there is often a huge vein of very black humour that can have us all laughing uncontrollably within minutes of meeting up.

5.  Sign up to social media

Facebook and Twitter have kept me going through thick and thin over the past few years.

There is a Facebook Page for virtually every childhood medical condition you can think of, where you can go to for help and advice any time of the day or night.  Other parents will have faced something similar and will be able to tell you how they coped. Twitter can be an excellent way of finding people in similar situations and social media in general is an excellent source of information, where the latest medical research, articles, and relevant events.There are also excellent forums facilitated by some of the larger national charities, which you can access through their websites. Forums are excellent – parents reaching out and helping and supporting each other when one of us runs into a problem or has a pressing concern.
Yvonne Newbold

Over the past few years I have made some fabulous on-line friendships; it’s quite amazing how close the bonds can become even if you never meet. The other great thing about social media, Facebook particularly, is that it’s easy to keep in touch with people you care about, even if you can’t get out to see them easily. I’ve maintained some really important relationships that would otherwise have fallen by the wayside simply because I can send a quick line to someone in a few seconds.

6.   Acknowledge that friendships change

When you start to come to terms with things, you will have changed too. You will go through a subtle process of re-evaluating what’s important to you in life and what isn’t. That means that some of your oldest friends might no longer be on your wavelength, and you may also find yourself in the hurtful position of discovering that the friends that you thought were rock-solid, “thick and thin” friendships can’t handle what’s happened, and just can’t step up to the plate and be there when you most need them.

Yvonne Newbold
However, you may sometimes find support in the most unlikely of places. People you barely know may become hugely important to you and your family because they can rise to the challenge and will be there for all of you no matter what. Accept these changes. Let old friendships go, let new ones flourish.
It’s natural, and happens all the way through life, but your sudden change of circumstances can make it happen much more dramatically than the normal pattern of friendships gradually running their course and loosening over time.

7.   Try not to worry

Worry is a particularly draining and negative emotion and in my experience, it doesn’t solve anything whatsoever; it just makes me feel even unhappy. Over time, I’ve also learnt that it’s a total waste of time, and if I let it, it will dominate and affect my whole thinking process, colouring my judgement and preventing sound decision-making. Worrying can drain you of all the resources that you need to cope. That means that if whatever you were worrying about actually does happen you’ll feel less able to cope. If it never happens, then what a waste of time all that draining worrying turned out to be!

There have been times when I have sat and worried about things that might happen to my children in the future, and I’ve broken my own heart in letting my pointless worrying take over.  Not one of those things I worried about actually ever happened, and even if they had done, worrying about it wouldn’t have helped us cope with it any better. I’ve learnt not to allow myself to worry about anything more than a day or so away, and now I don’t even call it “worry”, I give it a much more positive spin and I call it “planning”.
Yvonne Newbold

8.   An army of professionals

From this point on, you may find that your family life is dominated by an army of professionals; speech and language therapists, physiotherapists, occupational therapists, various Paediatric consultants, community Nurses, specialist team members, carers, social workers – the list is endless. Not only will there be appointments in clinics, there will be visiting therapists to your house, and regular multi-disciplinary meetings too.

Yvonne Newbold
Some you will love, some may make you silently seethe. Always remember that you are the only true expert in your child. You know them inside out, you have their best interests totally uppermost in your mind at all times, and yours is the one voice who can clearly advocate for your child.
It’s easy to be daunted and to become intimidated by their knowledge and experience, and it can be very hard to be confident enough to challenge decisions or treatment options that you don’t agree with. Always prepare as well as you possibly can for any appointment or meeting. If you can, take someone with you, and get them to take notes. Work out beforehand what you want to achieve for your child and absolutely go for it, but in as nice as way as you possibly can.

You will have working relationships with these people for a very long time and you cannot afford to alienate anyone; so banging the table and shouting loudly won’t achieve anything in the long term, even though there are times when we may feel that doing so would make us all feel a lot better.Be clear about what you want, and say so, calmly and clearly, at the beginning of the meeting. And it always helps to put things in writing either before or straight after the meeting, and emailing or posting a hard copy to the key professionals involved.

9.   Don’t ever forget to have fun

When a family has had to face a desperately sad and difficult situation they need more even more fun than most. There is always something to laugh at, and I would strongly suggest that you make it your solemn family duty to find a way to laugh together over something every single day. Happiness and laughter have enormous benefits. It improves our mood, which has a huge impact on our ability to dig deeper into our inner resources to find new ways to cope with what life throws at us. It also strengthens our immune systems, meaning fewer minor ailments and illnesses. Life is tough and can throw us curved balls when we least expect it, but having fun together as a family is so important, even if you as the adult has to fake it like crazy at first.

Yvonne Newbold
Your family will get through this, things will get better, you will cope, and you will find resources deep down inside you that you never knew were there. There may always be occasional wistful moments of sadness or of thinking “what if”, but they lessen considerably and become much more bearable; particularly if you focus on looking forward rather than looking back. Life will be good again, for you and for all your children, and in time a new normality will develop, one that perfectly fits your own unique family dynamic.
Toby, as you probably know, survived against all the odds, and he is now in his early twenties, and despite his many on-going life-long challenges, he has a great quality of life. He is one of the happiest people I know with an innate skill at finding the silly and the fun in everything. Although he no longer lives at home due to my own ill-health, he is a huge and integral part of our family, and he has changed all of us for the better.  I didn’t know it all those years ago, but he has given me far more than I could ever have given him, and he is the best teacher I’ve ever known even though his teaching methods have been unconventional, to say the least!

 

Are you on Facebook? If so, have you seen The Send Parent’s Handbook Page? It’s full of news, ideas, information, advice and support for families of special needs children.

Yvonne Newbold

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9 Steps to Help You Cope with Life Changing Disability or Illness in Your Child
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2 thoughts on “9 Steps to Help You Cope with Life Changing Disability or Illness in Your Child

    • February 18, 2017 at 12:24 pm
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      Thank you Emzamy, that’s lovely feedback and much appreciated. Hope things work out well for you and your family. Take care, Yvonne xx

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