Saturday, 8 October 2011

Special Saturday - Tips for Parents of Children with Special Needs

The one thing you learn when you have a child is that people - total strangers - give you advice. Then when your child has special needs it feels like every single person must give you advice whether they know you, have ever met you or know anything about your child's condition.

Advice is important and sometimes someone completely separate from the situation can see an avenue or option because they don't know what they are talking about and are not hampered by narrow thoughts but on the whole the best advice comes from other parents living the same experiences as you.

This week for Special Saturday we're sharing tips with each other so I thought I would let my mind wander and make a list of my own personal tips:

- It is normal to grieve. Grieving is part of the journey we are on. You grieve the life you thought you had and the life you thought your child was going to live. Don't fight the emotions, acknowledge them and let yourself grieve - you will feel better afterwards.

- Your grief won't end after a good cry. In fact you may find yourself watching a movie, a group of children playing or a mother cuddling her newborn child and you will feel the tears forming again for many years. But you will understand the tears and you will know that they will leave just as they have come.

- Don't let your child's condition define you. You are you and don't ever lose that. You're still a wife and a mother, a sister and a wife, a best friend and an aunt. Be all those things to all those people and enjoy being you.

- Accept that your life has changed. If you fight it and don't acknowledge it you will make your life harder. Things are not the same and they won't be again but that doesn't mean that it is all bad. There are positives and advantages some times so enjoy them. Of course we would give back the positives and advantages in a blink of an eye if it would turn back time and take away whatever has happened to your child but we are not magicians and no matter how hard we wish and pray this isn't going to happen.

- Learn to be flexible and adaptable. It makes your life a lot easier. For some of us that means becoming more structured than we would like and for others it means throwing away the clock and timetable and doing what needs doing when it needs doing. Go with the flow and don't worry about what other people think, they don't live your life.

- Take time out when you can. If that means sitting and staring at mindless day time TV while your child finally sleeps peacefully on your lap, then do it. The dishes can wait, the washing isn't going anywhere and if the beds don't get made - is the world going to end? No!

- Have fun! Our lives get very serious and sometimes down right scary. We sometimes forget to have fun. Watch a funny comedy or tell some silly jokes. Sing silly songs in the car or pull faces in the mirror while your washing that face again. Laughter truly is the best medicine and it costs nothing.

- Find the positives in even the darkest of moments. I promise if you look you will find them. It is very easy to see only the negatives because we are stretching ourselves, we're exhausted and sometimes the future doesn't look so good but by stopping and finding the positive it makes it easier and much more bearable.

- Hang on to your friends. Don't turn away from your old friends because they don't have a child with special needs. Your friends are important, they ground you. They will learn and grow with you on your journey and if a friend turns away from you - they weren't really a friend, let them go.

- Make new friends. It is really important to make connections within the Special Needs community. It really doesn't matter what your child's diagnosis or condition is, connect with other people who understand the pain, the frustrations and the exhaustion of having a child who isn't like the others. In return they will fully understand and celebrate your successes whilst also supporting you through your darkest times and frustrating challenges.

- Call every obstacle, problem, trial and tribulation a CHALLENGE. The word challenge infers you can overcome it and believe me when you change your mindset from problem to challenge it becomes easier to cope with what was once insurmountable.

- Be open minded and look outside the box. It would be awful to miss the therapy that could make a difference or a wonderful opportunity because it isn't mainstream or isn't what others think is appropriate.

- Don't tell yourself off or bring yourself down. If you catch yourself talking to yourself and telling yourself that you are doing a bad job - STOP. You'll feel heaps better not hearing that voice inside your head criticizing yourself and once it has gone quiet and still inside your head you can start to find the positives and tell yourself how amazing it is that you are still here and coping.

- Some days are really hard - but it will get better - eventually.

- Trust your instincts. You are your child's mother and you are the person who knows your child most intimately. Instinctively you know what is right or wrong for your child and when you need advice and when you don't. Listen to your instinct, it saves a lot of time.

- Accept that you are doing the best you can do right now and many years down the track you will look back and wish you had known then what you know now. But that is not how life is, we grow and learn and change and we can not turn back the clock but we do learn from our mistakes.

- It doesn't matter if your child can't hear, understand or speak tell them everyday that you love them, are grateful that they came into your life and that you are very proud of them. Some days just still breathing is a huge achievement and your child needs to know that you know that.

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This blog post is part of the awareness raising campaign - Special Saturday - raising awareness of people living with special needs around the world.

Please join the cause by joining the facebook page - http://www.facebook.com/SpecialSaturday
Following on twitter - @Specialsat and retweeting hashtag - #specialsaturday
Reading and following the Special Saturday Blog - http://specialsaturday.org/home/

2 comments:

  1. Jane I am tempted to print this out and stick it to my fridge! Thank you for some wonderful tips! Many of them are particularly relevant and meaningful to me at this time. Thank you

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  2. I am touched that you think my ramblings deserve a place on the fridge. That is praise indeed and if they help - that is wonderful.

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