A New Normality

Our latest blog is written by Yvonne Newbold.  Yvonne is mum to Francesca, Toby and Adam all of whom have disabilities.

Yvonne's Family
Yvonne is the author of The Special Parent’s Handbook, book for parents of children with any diagnosis of additional needs, disabilities or serious illness.  It is packed full of tips, tricks and strategies for coping with family life. In this blog she shares with us her own top tips to help overcome some of the challenges having a child with additional needs brings.  You can follow Yvonne on twitter @SpParentsHbook.  To find out more about her book and to order a copy visit her website here.
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, parents will often feel lost, frightened, helpless and desolate, and will struggle to believe that things will ever get better. I know this because all three of my children have different disabilities, and two of them also had very serious life-threatening illnesses that lasted for several years. Getting through the “coming to terms” process is one of the toughest things you will have to cope with as a parent, but things do start to get better once you’re through and out the other side. I didn’t know it when my children were each diagnosed, 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 eight things I didn’t know then, but I wish I had.  

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. 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. 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, 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.  

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. Let their schools know what’s happened as soon as you can – the school staff need to be alert to any changes in mood or behaviour so that your child can get the support they need. Certainly in the first few months, the lion's share of your time and your thoughts will be with the child in difficulties. Howevever 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. Even the smallest child will be picking up on the negative emotions from the adults around them, and they will need a lot of reassurance and security. It can sometimes be really helpful to enlist the help of a trusted relative or a close family friend to take them under their wing and do some of the explaining and reassurance; right now they need consistency, love, and some normal, carefree, fun childhood moments, too.  

Find a support network

Find other parents who have children with difficulties as quickly as you can, and start reaching out to them and building friendships with them.  Some of these parents 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 special parents I would not have coped at all. 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.  

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 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.   It’s a good source of information for 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. The Brain Injury Hub has an online forum for families of children with an acquired brain injury. 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.  

Acknowledge 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. You can 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.  

Try not to worry

Worry is a particularly draining and negative emotion and in my experience, doesn't solve anything whatsoever; it just makes me feel 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 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. I've learnt not to allow myself to worry about anything more than a day or so away, and I now don't even call it “worry”, I give it a much more positive spin and I call it “planning”.  

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. 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.  

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. It a tough one, and it's hard to laugh sometimes when we are dealing with something that was never supposed to be in the plan, but having fun together as a family is so important, even if you as the adult has to fake it like crazy at first.   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.
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