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Dealing with Disability

 
 
When you find out your child has a disability, you might feel emotionally overwhelmed. This won’t always be the case, however, and there are some effective ways to manage your feelings in the meantime.
 
 
Your feelings: What to expect
Every parent is different. But after a diagnosis of disability, it’s very common for parents to feel:
 
  • confused and overwhelmed
  • shocked
  • disbelieving or numb
  • denial
A whole range of feelings is normal. As parents get used to the situation, they may feel sad, especially when thinking about their disappointed hopes and dreams for their child and themselves. There can be feelings of blame – directed towards themselves and other people – as well as fear about the future. Parents may also feel confused and overloaded, with too much information, not enough information, sometimes conflicting advice and pressure to make decisions.
 
Parents' feelings can be influenced by how their child’s condition affects other aspects of their lives – it could have an impact on their work, or social life or even the amount of time the parent can spend on personal interests or hobbies.
 
As with any family, the amount of support parents have from others – partner, family, friends – also affects how they feel. For example, lots of encouraging support will help a parent feel more positive about their new role.
 
When parents finally get a diagnosis of their child’s condition, many often feel a level of relief because it allows them to move on and find help. This relief may come from the knowledge that the earlier the diagnosis is made, the sooner they can begin to find appropriate help, support or services.
 
There is no right way to feel. You can’t prevent your feelings, and you shouldn't try. Dealing with your feelings is part of coming to terms with the diagnosis and moving on with your life, your child’s life and your family’s life.
 
 
 
 
Talking about your child's disability
Talking to family and friends about your child’s disability can be daunting. What you talk about, how much you say and who you talk to – it’s all up to you. But remember that getting things out in the open can really help.
 
Why can it be hard to talk to others?
  • You might be still coming to terms with the diagnosis and all the feelings it’s stirred up.
  • The diagnosis may be complicated, and you may be trying to understand it yourself before you talk to anyone else about it.
  • You may be asked about the diagnosis by people you don’t want to talk to.
  • You want to sound positive and optimistic, but you might not feel that way.
  • You may be concerned about people’s reactions.

Who should I talk to and why?
Your child is a major part of your life, so those close to you need to know what the diagnosis means for you. The act of talking might even help you to accept it. The more other people understand about your child and you, the more likely they are to support you.

Your partner
Each parent will respond differently to a diagnosis of disability. Even a strong relationship can feel the strain, so talking to each other is critical. Here are some ideas:
  • Accept that there’s no ‘right’ way to feel.
  • Be tolerant of your differences.
  • Be open and honest about your feelings.
Your other children
Regardless of how old they are, brothers and sisters are likely to have questions, concerns and strong feelings. Children need to believe that their parents can cope, so when you talk to them, keep these tips in mind:
  • Be honest about the diagnosis, telling them things in a way they can understand.
  • Share some of your feelings with them, but try to be positive and optimistic.
  • Talk about how the disability might affect them. 
  • Encourage children to talk about their feelings and to ask questions. The more they understand, the more secure they are likely to feel.
Your family and friends
If you let your close friends and family know what’s going on, they can offer you emotional support, as well as help you out in practical ways. Being able to talk with you about your child will help them understand and accept her for who she is. And having people who understand your situation will help you feel less alone.
 
Other parents of children with disabilities
You might find lots of support and information from other parents whose child has been diagnosed with the same condition as your child. Listening to their experiences, their own highs and lows, and how they have handled negative reactions from other people can be reassuring for you, whether their child's diagnosis is recent or longstanding.
 
 
Seek Information
Some parents seek virtually “tons” of information; others are not so persistent. The important thing is that you request accurate information. Don’t be afraid to ask questions, because asking questions will be your first step in beginning to understand more about your child.
 
Learning how to formulate questions is an art that will make life a lot easier for you in the future. A good method is to write down your questions before entering appointments or meetings, and to write down further questions as you think of them during the meeting. Get written copies of all documentation from physicians, teachers, and therapists regarding your child. It is a good idea to buy a three-ring notebook in which to save all information that is given to you. In the future, there will be many uses for information that you have recorded and filed; keep it in a safe place. Again, remember always to ask for copies of evaluations, diagnostic reports, and progress reports. If you are not a naturally organized person, just get a box and throw all the paperwork in it. Then when you really need it, it will be there.
 
 
Do Not Be Intimidated
Many parents feel inadequate in the presence of people from the medical or educational professions because of their credentials and, sometimes, because of their professional manner. Do not be intimidated by the educational backgrounds of these and other personnel who may be involved in treating or helping your child. You do not have to apologize for wanting to know what is occurring. Do not be concerned that you are being a bother or are asking too many questions. Remember, this is your child, and the situation has a profound effect on your life and on your child’s future. Therefore, it is important that you learn as much as you can about your situation.
 
 
Do Not Be Afraid to Show Emotion
So many parents, especially dads, repress their emotions because they believe it to be a sign of weakness to let people know how they are feeling. The strongest fathers of children with disabilities whom I know are not afraid to show their emotions. They understand that revealing feelings does not diminish one’s strength.
 
 
Learn to Deal with Natural Feelings of Bitterness and Anger
Feelings of bitterness and anger are inevitable when you realize that you must revise the hopes and dreams you originally had for your child. It is very valuable to recognize your anger and to learn to let go of it. You may need outside help to do this. It may not feel like it, but life will get better and the day will come when you will feel positive again. By acknowledging and working through your negative feelings, you will be better equipped to meet new challenges, and bitterness and anger will no longer drain your energies and initiative.
 
 
Maintain a Positive Outlook
A positive attitude will be one of your genuinely valuable tools for dealing with problems. There is, truly, always a positive side to whatever is occurring. For example, when my child was found to have a disability, one of the other things pointed out to me was that she was a very healthy child. She still is. The fact that she has had no physical impairments has been a great blessing over the years; she has been the healthiest child I have ever raised. Focusing on the positives diminishes the negatives and makes life easier to deal with.
 
 
Keep in Touch with Reality
To stay in touch with reality is to accept life the way it is. To stay in touch with reality is also to recognize that there are some things that we can change and other things that we cannot change. The task for all of us is learning which things we can change and then set about doing that.
 
 
Remember That Time Is on Your Side
Time heals many wounds. This does not mean that living with and raising a child who has problems will be easy, but it is fair to say that, as time passes, a great deal can be done to alleviate the problem. Therefore, time does help!
 
 
Find Programs for Your Child
Even for those living in isolated areas of the country, assistance is available to help you with whatever problems you are having. While finding programs for your child with a disability, keep in mind that programs are also available for the rest of your family.
 
 
Take Care of Yourself
In times of stress, each person reacts in his or her own way. A few universal recommendations may help: Get sufficient rest; eat as well as you can; take time for yourself; reach out to others for emotional support.
 
 
Avoid Pity
Self-pity, the experience of pity from others, or pity for your child is actually disabling. Pity is not what is needed. Empathy, which is the ability to feel with another person, is the attitude to be encouraged.
 
 
Decide How to Deal With Others
During this period, you may feel saddened by or angry about the way people are reacting to you or your child. Many people’s reactions to serious problems are caused by a lack of understanding, simply not knowing what to say, or fear of the unknown. Understand that many people don’t know how to behave when they see a child with differences, and they may react inappropriately. Think about and decide how you want to deal with stares or questions. Try not to use too much energy being concerned about people who are not able to respond in ways you might prefer.
 
 
Remember That This is Your Child
This person is your child, first and foremost. Granted, your child’s development may be different from that of other children, but this does not make your child less valuable, less human, less important, or in less need of your love and parenting. Love and enjoy your child. The child comes first; the disability comes second. If you can relax and take the positive steps just outlined, one at a time, you will do the best you can, your child will benefit, and you can look forward to the future with hope.
 
 
Recognize That You Are Not Alone
The feeling of isolation at the time of diagnosis is almost universal among parents. In this article, there are many recommendations to help you handle feelings of separateness and isolation. It helps to know that these feelings have been experienced by many, many others, that understanding and constructive help are available to you and your child, and that you are not alone.
 
 
 
 



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