Finding out that your child has a disability, whether at birth or after an illness or accident, is one of the most shattering things that can happen to parents. You may go through all of the emotions that people feel after a major loss - the loss of the child you expected to have, the loss of your dreams for your child's future, the loss of the your child's quality of life, the loss of your way of life.

When these losses happen unexpectedly there is the added shock of things going wrong at a time of life when you expect every thing to go well. There are such big adjustments for parents and families to make that it is no wonder it causes stress and puts pressure on your relationships.


Coping with disability
Every child is different and every disability is different so how you cope will depend on your own particular situation. There are differences in the kind and severity of disability and also differences in experience of grief and ways of coping. Families can have children with very similar disabilities but learn to cope very differently depending on their own situations, finances, and the support they get from other family and friends.


Quality of life
Children with a disability can lead positive, happy lives and bring joy to themselves and many people.
Quality of life is not about ability - we all have different abilities.
Quality of life is about your child feeling well, being safe and comfortable, having experiences to enjoy, feeling that she is a lovable person, and having some things that she can feel proud of being able to do.
As many of my close family and friends have known over the years this topic has been a continuous one for me! "Quality of Life", this term was said to me about 2 weeks after my accident. Our rehab consultant had come to us to discuss the finacial responsibility of our insurance company. One of the first things that came out of his mouth was Braden's quality of life should not be hindered due to his situation. It is the insurer's responsibility to make sure he always has the things he needs to sustain a great quality of life. It hit me hard right then and there...wow, how are we going to give him the experiences he deserves, the life he was born to live? I was lost, I almost didn't want to dream about the future because the unknown was so frightening. It didn't take long for a fire to brew in my mind, body and soul that made me wake up and become relentless in my search for our "new life". The life we were about to travel...it was going to be different, not what I had expected on the day he was born, I had realized life was not over...just different. I can honestly say that I think due to and internal anger that at times frightened me...I would not stop at anything to provide Braden with all he deserved. I never took NO for an answer, when someone would try to say no or block my efforts of giving Braden what he rightfully deserved to have...look out world, anger is powerful...it was consuming! Over time I did learn to harvest the anger...I mean it wasn't a raging anger or an anger that I expressed through physical aggression, it was more of brewing internal battle. I always knew, no matter what the situation was...if other children were experiencing something or if someone tried to say No he couldn't do this or that due to his physical limitations...I found a way for it to happen. Until the last 2 years...I never lost a battle, and even to this day if I really wanted to "bring it on", I would still win...everytime! Fortunatly Braden has enough intellegence to fight his own battles, he is learning and know my focus is giving him the tools that he needs to prove to society that he deserve's the best quality of life possible.

Parents' feelings
At first you may go through the stages of grief that everyone experiences after a loss. These can include shock, disbelief, anger, blame, guilt, questioning of why it happened to you and your child, and panic or fear that you will not be able to cope.

These feelings can (but not necessarily) come back at different stages through your child's life as new losses happen. For example, the loss of ability to go to the local school or have friends, or become independent. So while you can achieve some healing, there is not just one loss but losses that happen over and over.

Take time to grieve when you need to. You do not have to bear this burden alone; there is much help available to you in the community.

How well you cope and heal depends on lots of things. These include:

what sense you are able to make of what happened (what you tell yourself about it) - this can be related to how well it was explained to you and what the cause was.
the amount of support you have from family and others, including service providers and other parents.
the relationship you are able to build with your child.
the quality of life your child is able to have (even children with very big problems can have enjoyment of their lives).
the effect it has on your family life.
the effect it has on your working life,
and, for some people, support from their religious faith.
Sometimes it is hard to realise how far you have come in healing. Think about when you first found out your child had a problem. How did you feel then? How were you coping? Then think about how you feel and are coping now. You might find you have come a long way.

Parents' needs
This is your child and you have the right to say what you want for your child and to be heard. Here are some of the rights you have.

To go through the process of looking for a cure if you want to, even if your doctor says there is nothing that can be done. If your doctor does not support you in this, then maybe you need a different doctor. (However if you feel the need to keep on looking when you have had the same news several times, you may need some help to move on to how best to help your child rather than looking for a 'cure').
An explanation of what has happened and why, as often as you need to hear it.
Information about your child's condition and how it will be managed, and to feel you can have some control of this.
Encouragement.
Respect.
For your child and you to be treated with dignity.
Privacy.
Some breaks from caring for your child (respite).
Continuity of care from a team of care providers.
The support of others who have had similar experiences, such as a support group of parents.
Information about what has happened and what is going to happen in day to day care and treatment.
To be able to ask questions.
To be treated with respect.
To know the words about his disability.
The opportunity to achieve as much as he can.
The opportunity to have as much say as possible over what happens to his body.
To be valued as a person.
The opportunity to have friends if possible.
To be helped to deal with being seen as different by other people. To be helped to overcome discrimination.

I have chosen this topic my friends for Family Matter's Friday because one of my reason's for blogging was to bring awareness to society, family and friends regarding those living with disabilities. I have been fortunate to have close friends and family who have been there and continue to be during our journey...but for those who are not exposed or experience being a part of someone with a disabilities, I believe they should be educated about it. I understand that this is a topic that is just so large...seriously I am not the only person in the world who lives with an altered path, however I can tell my story and I can express the feelings of a mother who is raising a child with a disability. I hope I am not coming across as a "know it all" because that is not my intention, all mothers have different feelings and we are not all the same, we cope different, we express differently but we all want to be understood and that is my just.

Most of my information is taken from a parent and child website. It just helps to find topics and while I read the information on the website I think of my own feelings which makes it easier to blog~