Monday, September 8, 2014

The challenge of raising a child with special needs

Raising a developmentally different child is a challenge for parents. The challenge begins when parents first learn that their child is not “normal”, something has gone wrong. When this happens there is a natural period of mourning and sadness in them and their family members. This is important because the people who are their support system are affected too, they are dealing with their own pain. Therefore, they have a difficult time responding to the grieving parents.

In other cases parents have a “typical” baby for several months before suddenly problems begin to occur- the child does not respond to situations in a typical manner, has developed unusual mannerisms and/or has lost previously acquired language- these are some of the losses of functioning that commonly occur in autism.  

In any case, there may be some issues that interfere in their ability to cope with the unexpected reality. Some of these issues include the loss of the “perfect child” they fantasized about and all the expectations from “I wanted my daughter to be a ballerina,” or “I hoped my child would be a doctor” to college, marriage and procreation. Suddenly parents are faced with the possibility that their child may be dependent on them for their entire life.

Parents are overwhelmed with having to learn about a disability they had only vaguely heard of and how to navigate the cumbersome route of doctors, diagnoses, school systems, therapies, and funding sources of services. All of these while they are grieving.     
Therefore, it is important for parents to deal with their own emotions, a frequently overlooked side of the situation. The burden of having a child with special needs involves a level of stress that often affects relationships and health, adding wood to the fire. So my advice is first TAKE CARE OF YOURSELF. As the flight attendants instruct us before a flight, place the mask on you before helping others. Because if you can’t breathe, how can you help? Remind yourself that it is not your fault and seek professional help if necessary.

My next advice is take the time to observe your child. It is important to remind yourself that although your child is not responding in the “normal” way, she still is responding. Be a detective to get clues and solutions to the problems that parents of typically developed children don’t have to deal with. Your child will “tell” you the answers. What gives her pleasure? How to adapt to her changing moods? What turns your child off? How to deal with her challenging behaviors? How to set the environment to avoid problems and trigger the desired responses?  Your child have special needs and is different from other children, but he is also special in his own way, and it is your job to figure out how. Capitalize on opportunities to let him experience his special-ness. For example, if he loves numbers, engage in activities where he can be the “smart” one. If he can’t stay still and jumps all the time rather than telling him to stop get a trampoline, a bouncing ball, and other equipment that will help him express himself. 
Be ready to change your priorities. A dad in one of my classes once said to me “I understood that I’m here to help my son, not the other way around.” There will be sacrifices, accept them. One of the most difficult things you may have to learn to do is to keep a check on your expectations and learn when to push for more and when to place your child’s self-esteem in the first place.  

And know that you are not alone. You are surrounded by professionals and specialist that devoted their careers to understand children like yours. Use them as much as you can, and FOLLOW THEIR ADVICE. It is not enough to ask for help, be ready to do the work.

Daniel Adatto, BCBA




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