When you have a child with a disability you quickly discover that he/she needs you again and again. This has a big impact not only on their life,
also in the lives of those around you, especially in the lives of parents. There are very good reasons why you should take care of yourself before anything else.
If we are not well, we will progressively build up stress, resentment and anger in our relationship with him, which will undermine and damage us both. If this happens over a long period of time, we will become burnt out, exhausted and physically ill. We will end up with nothing we can do and nothing to offer him, and then everyone gets hurt. So before you start looking for and meeting your child's needs, first see if yours are being met.
1. Stay stocked up (the "fridge" tip)
Think of yourself as a fridge full of food! When you are well
You have a lot to give, not only to your children, but also to the important people in your life, when they need it. The problem is that the more you give, the less you are supplied. If you don't refill it, you will have less and less to offer and one day you may not be able to give at all. So from time to time "keep an eye on your fridge". Keep yourself "full" with the things you need, so you will be in a position to give your child what he or she needs. Make a regular schedule of doing things just for you: free time, going to the gym, taking a relaxing bath, watching a film, going for a walk, listening to your favourite music...
Anything that makes you feel good and brings you well-being. And if you suddenly feel guilty, don't do it! Tell yourself that you are stocking your fridge so you can offer more to the people you love.
2. Surround yourself with supporters
You have to have the strength to establish the best possible support network for you to draw on. It is very useful to have people you can trust and delegate to or who can lend a hand to give you a break. Accept offers from friends or family. There is nothing positive to be gained from becoming a martyr by putting it all on your shoulders. Contact your local medical or social services to see what help you can get. If you can afford to pay for some extra help, it will be a good way to keep yourself physically and mentally healthy. Students often welcome the opportunity to look after your child for a few hours a week, especially if they are studying something related to your child's difficulties. You can place an advert in the school or in the local newspaper (but of course make sure that the person you take on is the right person).
3. Don't take things personally
As parents, we expect to put a lot of love into everything we do for our children. But there are moments, when we need this love "back", that are very special. They are moments of joy and security. A difficult thing for parents of children with disabilities is that they don't always feel they have to "return" that love.
This can hurt when you don't get what you need from your child: a kind smile, a nice word, or, worse, when their behaviour seems hostile. It is important not to take this personally because he is not doing it to hurt you. No matter how he behaves, you know that he loves you and needs your love too.
4. Don't forget other areas of your life
Because children need so much time and energy, caring for them can end up taking up all your time if you let them. It is easy to end up neglecting your other interests or distractions. Try to maintain a balance between caring for your child and attending to your other relationships and interests.
5. Be realistic when talking about problems
Sometimes there are so many difficulties to work through that they seem to overwhelm you. It's impossible to fix everything at once, so where do you start? Go slowly and approach the situation realistically. Make a list of the problems you have and prioritise them according to how urgent they are. This will depend on things like how serious the issue is and how much trouble it is causing you and others. It may be useful to make this list with a partner or a friend.
A great advantage of tackling problems in this way is that once you have decided to focus on the most urgent problems, you can allow yourself a break and delegate a little to others.
6. Set SMART goals
Don't expect too much from yourself or your child too quickly. When you are trying to make progress in an area, take it one step at a time Take time to make your goals SMART. SMART means:
● Small
● Measurable
Achievable ● Achievable
● Realistic
● Time based
For example, a non-SMART goal might be for your child to "be polite". The SMART goal might be "to be polite to three people throughout the day".
7. Let strategies be the key, not the goal.
Remember that advice and strategies are meant to serve you, not the other way around. So be flexible. If an idea works for you, use it whenever you can. But if a piece of advice doesn't work for you or makes you feel bad, just ignore it. Trust your judgement.
You know what works best for your child. But keep one thing in mind, time can make a difference: something that doesn't work today may work six months from now or the other way around. So try things more than once; see what works for your child and follow your intuition.
8. Try not to make it harder for them by overprotecting them.
It is a big mistake to overprotect any child by letting him do too much of what he wants or giving him too much. When we do that, we make life more difficult for ourselves because we end up with a child who is very demanding and hard to please. But it is very easy to fall into this trap for different reasons.
For example:
We feel sorry for him when life is hard for him and we want to make it better for him.
He always asks and insists to get what he wants, and it is easier to give it to him than to put up with his insistence.
● We obviously want him to be happy and feel guilty and responsible when he is upset (even when his upset is totally irrational).
The fundamental reason for being lenient with him is that we want him to be happy. What we have to think about is that being excessively indulgent with him will never make him happy in the long run. It only gives him a completely unrealistic view of life and leaves him with a future of misery and disappointment. It is hard to say "no" sometimes, but it will be the way to make things more pleasant for you and your child.
One suggestion for when he asks for something is to offer it as a reward for good behaviour.
9. Find someone to talk to
Make sure you don't keep all your feelings inside. You need at least one person you trust to tell how you really feel. It can be someone in your family, your partner, a friend... The most important thing is that you have the opportunity to let go sometimes.
Talking really helps!
10. Mums: unhook yourselves
Mums in particular have a habit of feeling guilty unless they do everything for their child. We need to break out of that habit, because no one is going to care about us unless we do it ourselves. It's not an easy thing to do. Think of the advice airlines give: "In an emergency, put your own oxygen on first before trying to help others".
Remember: one of the best ways to love a child is to care for its mother!
11. Don't give it more importance than it has
To those unfamiliar with your child's difficulties, he or she may often appear rude, arrogant and clumsy. When their behaviour provokes disapproving looks or comments, the child is usually unaware of it. But parents can be aware of all the signs of disapproval and judgement very easily. The next time you feel embarrassed and upset about how people judge you or your child, remember this: "Those who don't have the problem care, and those who do don't care.
There's only one mother, and what a mother!
Cristina Oroz Bajo