Problems faced by families with disabled children
Parents of children with disabilities face great sadness, fear, worry and more from loved ones and even family members, regarding their little angels with eyes of spite, concern and even disbelief they are really disabled at the time.
The change in routine and the emotional stress from dealing with "normal" so to speak siblings, who often fear they are loved "less" by their parents because more time and effort is being consumed by the brother or sister with special needs, can be difficult.
Whether it's Cerebral Palsy, mental retardation, amputation, traumatic brain injury, down-syndrome or a learning disabilities like ADHD. Dealing and coping with the problems that come with children with special needs or a specific disability and for those who care for them daily most certainly build up over time, often leaving a parent with a mixture of emotions they have to hide and cannot share--with anyone.
FINANCIAL BURDEN OR HARDSHIP -
When a parent first discovers their baby or child has a disability, they do not stop to even think about the costs and how it will affect the family in the long run. All they can think about is how to help their child.
Medications, therapy, counseling, rehabilitation and physiotherapy, occupational therapy, social and emotional development and schooling, all of these lead to money being swept away from families in order to help aid their child through life. And if you are a low income family, the devastation financially can make a parents job to take care of their child more difficult. Knowing where to turn, financial or government programs available, can help ease the strap on an otherwise empty wallet.
Look for support through your community support workers and offices. Here in BC, Canada, we have Child Development agencies which can help ease the burden financially for the things a child needs, while coping with their disability. Costs can run high, and sacrifices will need to be made--by all family members, in order to make it through the trying times.
Take my four year old son for example: He was born with Cerebral Palsy (mild) and did not walk or talk before his second birthday. But it was while he was a baby he faced his greatest challenges, with illness, problems communicating, breathing problems and so forth. The cost of travel back and forth to Children's Hospital, where he began treatment as an infant, was hard considering we lived four to five hours away.
Paying for parking, meals we needed while he was getting treatment, accommodations, because we lived out of town, and then finally the decision of sacrifice, to move because costs grew too quickly and got to be too high for our family to cope. We still had two other sons to care for, sons who did not have special needs.
There were medications, orthopedics and special devices our son needed to help aid him walk. Speech therapy, to help him learn to form his words correctly, so that we could communicate with him. Developmental classes for early help with socialization with other children in his age category. Add all of these things up, and then add in more children you love and care for, who also have needs.
The cost is overwhelming!
My 3 year old son who might have Asperger's having a melt down
THE ISOLATION -
Families can find themselves isolated from their support circles (family and friends) when dealing with a child that has special needs or disabilities. Nobody is to blame. Many people do not know how to help or even cope with the realization that a child could have such problems, and in turn they do not know how to act around not only the child, but the parents as well. Depending on the severity of the disability, some families have to spend all their time to come up with coping strategies for both their child and themselves, along with other friends and family to make the disability easier to deal with.
Many families stop socializing when they discover they have a child with special needs, out of fear for how that child and they will be received by the public and those around them that matter to them, how their child will be loved while they learn to deal with the issues at hand.
Some families pull away, make new friends and find new families in the special needs community who can better understand the hardships they are facing, the struggles they are going through, the guilt, loss, anger, pain and fears that go along with raising such a child, to help aid them in not feeling so alone, empty and disregarded by those who are supposed to support and love them.
Many people do not understand how great a role ISOLATION plays for those once they discover they have a special child with special needs who needs more than just love, and the social acceptance parents wish for their child.
SOCIAL ACCEPTANCE -
It is very sad that still, even today in our society that many children and adults who suffer with disabilities are socially unaccepted. You can hear the whispers and the judgements that made behind closed doors when those who do not understand speak their mind.
"Look at how that child behaves... that's awful!" (A child with Asperger's acting out in a mall because there are too many people around and having a melt down can be perceived as spoiled.
"That family cannot cope with that poor child and needs some help." Regarding the actions the family takes in order to deal with their Aspie kid, acting out, and how they help their child deal with the issues at hand.
Passing judgement, accepting a child or family socially are two things a family faces in dealing with a disabled child, especially a child who does not wear their disability out in the open for all to see. Even from close friends and family, everyone has an opinion on how the family deals with things and the issues they face. It is not easy. It is difficult, and it can be disabling in itself to a family who is already struggling to cope and keep their heads floating above water.
Social Acceptance with the passing of judgments is something all families face when dealing with a disabled child. Even from their closest friends, everyone has an opinion on how the family deals with the issues they face. It's never easy and sometimes is disabling itself to the family who is already trying to keep their heads above water.
The list goes on and on for a family dealing with a disabled child -- social acceptance, isolation from family and friends, judgement, snickers and sneers, the cost of medicines and therapies.
One way you can help, is to become informed, before passing judgement. Discover the situation the family is in. If it's a disability you don't understand or have even heard of, do the research, before removing yourself or passing out your opinions. Be supportive! Otherwise you are making the road the family is traveling down filled with more pot-holes, pits and danger than they need, as they are already coping with enough.
And remember, no one is perfect, least of all human beings. Each of us is disabled in one way or another, whether it be physical or mental. Depression, handicapped, OCD, Fears that keep you from living your life, Cerebral Palsy, Asperger's, ADHD, Anxiety Disorder, Panic Attacks... the list goes on a mile long and each of us has experienced one form of a disability or another.
Don't leave a family dealing with disabilities lying in the darkness alone. Provide them some light and you will be amazed at the rewards that will follow for both the family and--you.
Writer's Note: If you are a parent of a child with special needs. Don't despair if you feel the ways above I described. check out your local community resources for groups to join, call your local mental health unit for children as they often have programs as well.
These children are all God's little angels and they were placed on earth for a purpose, to make us stronger, teach us our own limitations, how to love and how to forgive and fly free.
You are not alone...