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.
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.
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.
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.
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.
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.
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!
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.
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.
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