Bringing up a Child with Special Needs: When Your Child Receives a Diagnosis
For some parents, getting a diagnosis of a special need is a relief. Finally, you have a name and a condition to explain what has been going on with your child. For others, the diagnosis of a special need is a painful shock. No matter what your initial reaction is, you are likely to have many different feelings after your child has been diagnosed. You will understandably want to learn what steps to take after a diagnosis and how to manage all the emotions you may have as a result.
Common reactions to a special needs diagnosis
Every parent reacts differently to the news that their child has a special need. But there are some typical reactions, such as the following:
Sadness and grief. Parents often experience both sets of these emotions when a child receives a special needs diagnosis. It is also normal to feel sadness and grief when a child does not meet developmental milestones.
Denial. Denial can be a way for parents to protect themselves from painful news. Denial gives parents extra time to absorb the new information about their child’s special needs diagnosis they we begin to redefine goals and dreams to move forward.
Self-blame. Some parents blame themselves for not paying attention to the little signs that something was wrong, for passing down a genetic disorder, for not taking good enough care of their child, or for not urging professionals to really listen to their concerns. Many parents ask, “Why us?” or “What did I do wrong?”
Anger. As the parent of a child with special needs, you may feel anger. Anger may be an outward sign of how painful it is to watch your child struggle. Anger may represent your feelings of injustice and that the world is not fair, and your realisation that the dreams for your child may not come to fruition as predicted and may need to be readjusted.
Fear. At times, you may fear for your child’s future, worry that your child is feeling pain, or wonder how friends and family will react.
Guilt. Guilt is a common parental response to a special needs diagnosis. You may feel guilty because you’re angry with your child, because you believe you haven’t done enough, or because the care your child needs takes time away from your other children.
Resentment. As much as you love your child, you may have difficult feelings about the diagnosis which may interfere with your affection for your child.
These are all normal feelings. But if you have strong negative emotions, such as fear or guilt, they can erode your confidence, affect your relationships with your family and friends, and keep you from providing the best care possible for your child. That is why it’s important to try to find ways to manage any painful feelings your child’s diagnosis may cause.
If you are feeling overwhelmed by guilt or any other strong emotions, you may want to consider talking to a professional counsellor or therapist. A counsellor can help you find productive ways to cope with your reactions to the diagnosis. Your doctor can give you a referral, or you can search online.
Steps to take after you learn that your child has a special need
You can take many positive steps to come to terms with your child’s diagnosis and start getting the help your child needs.
Consider getting a second opinion. If you have any doubts about the diagnosis or the doctor who gave it, consider seeking a second opinion.
Give yourself time to grieve. After their child is diagnosed, many parents of children with special needs go through a process similar to grieving. It’s not uncommon to have many emotions, beginning with denying the diagnosis, then experiencing several other stages before ending with acceptance. Many parents have to give up their previous expectations and ideas about who their child is and will be in order to accept who their child truly is.
Learn as much as you can. Educating yourself about your child’s condition will help you provide good care, make informed medical and educational decisions, and know when your child is having difficulties. You could start by searching for your child’s condition online.. As you begin your search, make sure you look for reliable websites. Information that you seek initially needs to be factual and evidence-based, and not based on anecdotal information that other individuals may share.
Ask a lot of questions. Speak up if you don’t understand something that you hear from one of your child’s doctors, teachers, or counsellors. Don’t be afraid to ask an expert to define an unfamiliar term or concept.
Reach out to other parents. Many parents say that one of the most valuable things they’ve done is connecting with other families that include children with special needs. You can find other parents through local or national support groups, your child’s school or doctors, or through a children’s hospital as they may have social workers as a part of the group. . Be aware that each parent’s experience—just like each child—is different. So information shared by a parent may not apply to your child.
Develop strong relationships with your child’s health care providers. Having a good relationship with each of these providers—including doctors, therapists, and other specialists—is key to your child’s health and wellbeing and to your ability to make informed decisions.
Find out about helpful community resources. Many council schemes and services may be available to you and your family—early intervention services, a one-on-one aide at school, or a summer camp for children with special needs. You can find out about these through your child’s doctor or school or from other parents. Start lining up these services as soon as you can as there may be long waiting times for a first appointment.
Contact national organisations. Every major disability has one or more national organisation that provides information and services to families of children with disabilities. These groups can help you see the “big picture” of your child’s diagnosis.
Talk to friends and family. Your first instinct may be to avoid talking about your child’s condition, but most parents find that, in the long run, it’s better to talk openly about their child’s special need and what they are going through. Your friends and family may not understand exactly what you are experiencing, but they can be a valuable source of support during difficult times. Also, being open with friends and family helps them learn about and, eventually, accept your child’s condition. If you’re not sure how to talk to others about your child’s diagnosis, consider taking the time to “script” a brief explanation with your partner and other children. This will help all of you feel more prepared for other people’s questions.
Accept help. Often when a family is faced with a serious diagnosis, family and friends want to help. If they offer to cook meals, do laundry, provide respite care, or just sit and listen—and if these things would help you and your family at this time—do not feel reluctant to take them up on it.
Realise that the diagnosis and the emotions and stress that come with it can affect your relationship with your partner. You and your partner may react to the diagnosis in very different ways. You may still feel angry or guilty about your child’s condition, while your partner may accept it. Keep talking during this process so that each of you knows what the other is thinking and feeling. Also, try to spend some time together without talking about your child’s needs.
Helping your other children adjust to the diagnosis
The experience of growing up with a sibling with special needs can be very positive. But it’s not always easy.
Siblings may feel that they take second place to a child with special needs or that they have to become an additional caregiver. They may struggle with other people’s reactions to their brother or sister or feel resentful about the attention their sibling gets. You can help by taking the time to talk openly about your child’s disability with your other children, using age-appropriate language and concepts. You may also want to investigate a, an organisation for and about the siblings of children with special needs.
It can be a shock to learn that your child has special needs even if you’d already suspected something. But you are not alone in this experience. Reach out to other parents and families who are going through the same thing. Other parents can be a source of information, advice, and emotional support.
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