Survival skills

Whilst I endeavour to impart any wisdom I have gained over the years to parents, carers and professionals reading this, I may even attempt to practise what I preach! My wonderful online friends are all parents of children with autism or a related condition and try their best to encourage me to take time out for myselfand to learn to relax. That is not something I am good at doing. In fact I find it impossible. Personally I need to be doing a dozen jobs at once otherwise I get bored. Everyone is different so the secret is to find what works for you and embrace it. It is, however, imperative that each one of us finds our own survival techniques in order to ensure that not only are we happy and healthy parents, but we are also happy and healthy people in our own right.

Although I am divorced and therefore do not have the feelings and wishes of another adult in the house to take into consideration, I have spent many hours lending a listening ear to couples who are being torn apart by the stress of caring for a child or children with special needs - although I have also watched children with special needs draw couples closer together as they unite in their fight for understanding and services. Make sure that you and your partner find time for each other (not easy I am sure but it can be done) and that you actively share the workload - a good partnership consists of equality and the ability to make the other person feel valued, loved and needed.

In my humble opinion, surviving and enjoying life as a parent is all about prioritizing. As parents of children with autism, AS, AD/HD or any other special needs, our priorities need to be slightly different from those of other parents. As my boys have been so very ill at many times in their lives, I tend not to worry about coughs and colds and minor ailments. Whilst I feel sorry for them and do all I can to alleviate their symptoms, my priorities are slightly different and in the main, I deal with most ailments myselfunless I consider them life threatening.

One of the best pieces of advice I can give to parents of children with any special needs, particularly a 'hidden' one such as autism or AD/HD, is to release others to think what they like. If you have tried unsuccessfully to 'educate' family or friends about the differences of your children then at some time, however frustrating (believe me I know!) you must accept that some people are unwilling or unable to learn. The key to self-preservation is your own acceptance and that includes the acceptance of ignorance and intolerance in others. Some people we just cannot change. Some things we cannot change. The secret is to recognize these and move on.

I will happily let Ben out of his buggy if I consider him to be safe and unable to do any damage and he will flap his arms, spin around or commando crawl about the floor having a great time - as long as he doesn't directly disturb other people then it is fine by me. When Joe sings at the top of his voice, does his crazy moonwalk or makes monkey noises, I consider it irrelevant in the scheme of things. As they get older and more able then these things can be addressed, but for now I am glad that they are happy and safe and progressing well in their own delightful way. As I have said earlier, to compare our children with typically developing children or to compare our lives with the lives of others, leads us on the road to despondency and depression - a place that I visit from time to time but not somewhere I want to reside!

Here are a few tips that keep me sane (even though some may dispute that!).

• Remember to laugh. First and foremost, definitely of utmost importance.. .keep your sense of humour. Many of our children's antics and conversations are hilarious and bizarre.

• Take a step back from life and watch the children in all their beauty. Whether I am watching the teenagers stomping around and bickering or Luke chattering on about his website, or the younger two spinning around and play-fighting, there is nothing that refreshes me more than to just smile and watch.

• Do away with guilt. Guilt first rears its ugly head as we wonder if we have 'given' our children their problems. It then attaches itself to our shoulders as we beat ourselves up for handling a situation badly. If you truly feel that you have done wrong by your child, apologize and explain clearly how you felt. Even if you believe your child cannot understand, saying it is important.

• Don't be afraid to let go. If you have been given respite, either formally or informally, then kick the dreaded guilt off your shoulder and make the most of your free time (or time with the rest of your family). Remember respite for you is also respite for them and you will all be much more able to cope after a break.

• Don't be too independent - if someone offers help then take it. All of us need support in some form so grab all you can and never be ashamed to admit that you need help. It is not a sign of weakness if you feel you are not coping. On the contrary, it is a stronger person who can admit his or her limitations and act accordingly.

• Cherish your child's uniqueness. When Joe bombards someone with a barrage of awkward questions or Ben spins around someone's ankles, I smile at their openness and lack of inhibition. When my children are all acting in their own seemingly strange little ways, I remember Luke's motto 'different is cool'!

• Take life in 'bite-sized chunks' (once again thanks Jude!). As parents of children with any special needs, it is natural to worry about the future and what it may hold. Whilst as parents we need to plan ahead in order to sort out provision for our children, we have no more control over or knowledge about the future for our typically developing children than our autistic ones.

• Be true to yourself. Remember that you have no need to justify your actions to your friends, relatives or the public. You know your child best and must answer only to your own conscience.

• Indulge your emotions. In the privacy of your own room, away from your children, allow yourself to sit and have a good cry. Indulge in self-pity, anger, frustration and depression in small amounts. Be honest with your feelings and scream, shout and bawl your eyes out if you feel like it.

• Find yourself a support group or someone who you can moan to, cry with and who can support you through the good times and the bad. Being with like-minded people can alleviate the sense of isolation and help you to realize that others do truly understand.

• Try to get access to the internet. The internet is a valuable source of information and contacts and there are many 'lists' and forums whereby people with the same interests can exchange knowledge and support via email on almost any subject. I cannot begin to describe the depth of help and advice I receive from my online friends.

• Be proud of yourself as a parent. Believe in yourself, that you are trying your best and accept that you are not infallible. All of us have and will make mistakes - be kind to yourself.

• Don't get disheartened when your child takes a step backwards. My friend (and yet again, thanks Jude!) calls this the 'autie two step' and each time one ofthe boys regresses, I merely think, 'here we go again' and wait for the feelings ofeuphoria when we take our steps forward again.

• Make time for yourself. However simple that time is, it is essential that we all take a little 'me time'. There is no need to book yourselfa weekend away at a health club or a luxury hotel (though it would be nice, so ifyou can manage it, go for it!), just finding a few minutes each day to focus on yourselfis important.

• Try to find a relaxation technique. This is my downfall, though I am becoming increasingly aware of its importance. If possible, go out to Yoga class, Pilates, Tai Chi, meditation or indeed anything that can teach you relaxation techniques to also use at home.

• Watch the sunrise. If you are up at the crack of dawn as I am, throw the kids in front of the television for a moment and watch the sunrise and listen to the dawn chorus. The peace will be shattered soon enough but these small things give us our boost for the day.

• Use aromatherapy oils and make time for you and your partner to give each other a massage. I know this sounds impossible and easy for me to say as I have no partner, but those precious moments can revitalize both of you.

• Surround yourself with things that make you feel good. I am easily pleased - I merely smell a few wonderful smells, look at a few glittery things and straight away my spirits are lifted. Try your best to find some feel good factor in your own life and immerse yourselfin it when things get tough. I never go anywhere without a few smooth stones in my pocket and a few sprigs oflavender or other sweet smells.

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