Disabilities

Coping with Disabilities:

Part 1.

I will address all information from my experience. My second job in the summers of 1969,70,71 took place at a State Institution for the Mentally Retarded. I observed many horrific situations during my time there. My comments will come from those experiences of not only what I saw but myself had to deal with.

It used to be that most disabilities were either genetic, birth defects or a form of retardation. Most were detected at birth or shortly there after when development delays occurred or when you could visually see the difference.

Many of these fell into the categories of MS, Cerebral Palsy, Down’s Syndrome, Blind and Hearing Impaired, Seizure Disorders, etc.

The problem with these types of disabilities were there were no clear-cut answers for the cause of disabilities unless it happened at delivery, or due to a severe illness such as meningitis, oxygen deprivation, or similar scenarios.

Those not occurring at birth were usually due to sever illness or traumatic brain injury.

This classified two forms.

  1. Birth disabilities where parents went through extreme guilt; wondering what they could have done to prevent it leading to extreme anger.
  2. Disabilities due to illness or injury caused parents also to go through extreme guilt thinking they were poor parents who should have protected their children.

Out comes from these two scenarios usually led to two options.

  1. Acceptance of Disability doing the best you could as a parent.
  2. Shame leading to institutionalization, foster homes, or adoption not having to deal with it or explain to friends, family, and neighbors.

Development led to two types of development:

  1. Well adjusted, accepted and happy. Parents’ realizing no one was to blame.
  2. Poor adjustment, not accepted, and angry. Parents too ashamed to accept, frequently leading to a divorce over disagreement about the child or situation.

What was the difference in the development?

Development usually was typically due to the environment they were placed in whether it was in their own home with loving families or in an adoptive or foster home. If they were treated like part of the family and loved then they developed normally at their own level. Often times being happy because they didn’t know any difference.

However, if placed in an institution or if kept in a home that couldn’t accept the disability they usually did not develop with the disability. Instead, there were often guilty parents, divorce, anger and mistreatment or institutions; where they were not only forgotten by their families but had the worst caregivers and conditions possible. This frequently led to misbehavior. Acting out due to frustrations and lack of appropriate role models became a daily behavior. Learning of bad behavior from other clients who didn’t know any better. There were no parenting guidelines, no time to teach right from wrong and not understand ones own frustration. Disciplines were abusive and at minimum harsh due to the lack of knowledge, funding, and number of clients that were being dealt with on a day-to-day basis. Institutionalization should be the last result and reserved for the most severe who cannot be cared for in a home environment.

Institutions paid minimum wages, found it hard to get quality workers; there not only wasn’t time for nurturing but no one knew how to help these children. If the children’s disability was severe, enough for them not to know it then life went on at a somewhat normal pace. However, for someone like a Down’s syndrome Child who wanted Love and acceptance behavior problems often became apparent from a very early age. Then as the child grew older, the anger accompanied the behaviors. Children not only lived in unacceptable conditions but they were forgotten by society in general. The saying “Out of Sight out of Mind,” often applied here.  There were lucky to have a change of clothes. Gifts  and toys were unheard of most of the time and if they were lucky enough to receive something it was usually put up due to inconvenience.

Leading me to the issue of COPING:

How does one begin to Cope with a child with a Disability?

First it starts with education and knowing everything you can about the disability from onset. Was it genetics, could it have been prevented, will future children be at risk, what is future prognosis, and can I physically, mentally and financially handle this on my own.

Then you start to break it down.

  1. Emotions – family has to learn to grieve the loss of a child the same way as they would in a death because they were thrown a curve ball. They weren’t expecting a child with disabilities. They will go through the same cycle of grieving and need to know it’s okay for them to have those emotion
  2. Acceptance – reality check time. Can I accept living with this child and being the best parent that I can be to this child or can I accept that this child needs a parent other than myself who can accept them. For some parents the best thing they can do is to put the child up for adoption or in a foster care situation if they are not going to be able to be a loving, supportive parent.
  3. Support – Whatever the decision is both the parents and child will need support and love.
  4. Home – once the child has it’s home coping begins with acceptance and love. Allow the child to develop at it’s own ability. Learn to appreciate baby steps. Don’t compare to other siblings, or someone else’s child. This is your child to love accept it for who it is. Every child is special and for whatever reason’s they have either been gifted with a talent or a disability. Why will never be answered so enjoy the personality and the special angel that you have been given.
  5. Development – be involved in helping with the developmental stages, that means stimulate the child don’t ignore it. Learn everything you can to assist children in accepting and growing naturally with their own disability.
  6. Discipline – with love. Even a disabled child needs discipline. Don’t be afraid to say no. Don’t be afraid that you will cause additional problems if you discipline. I once worked with a mother who couldn’t discipline her child because she was afraid it would cause him to have seizures. I was with her at the pediatricians as he began to spit on the doctor. The boy was seven years old. I asked her in front of the doctor, are you afraid of him because of his seizures? Do you think if you discipline him he will go into a seizure? She replied yes. The doctor was amazed at my insight. He then explained to the mother that he was more likely to have a seizure from not being disciplined because he was getting himself worked up trying to push the boundaries. Even children with disabilities have to have boundaries set. The sooner you do that the happier all will be. My own son tried to use asthma against me by throwing himself into an attack. When he found out one swat on the behind to make him take a deep breath was the reaction from me he stopped doing it. This was all on the advise of his doctor who had advised me not to let him use it against me. Children will learn to use their disabilities to manipulate adults if allowed to.
  7. Education – be involved with your schools. No what programs are offered understand them and become your child’s advocate. If you don’t understand find an advocate who will help you. Ever child needs someone in their corner. Make sure this experience is the best possible. However, it is vital that you form a positive network with the school system. This will save you many hours of agony and will assist your child with being treated normally in a difficult setting.  Offer to educate classmates about the disability so that everyone understands. This can be a very positive interaction for all. Most of all have high expectations. You get what you expect. If your child knows you don’t believe in them then they will have no expectations.
  8. Normal – “what is Normal does anyone know? However, the more normal the daily routine is and the more your child fits in to the family unit the more likely to have positive coping skills of his/her own disability. This is very important to family adjustment.
  9. Participation – allow your child to be in activities – now there are many activities that involve the disabled. You see cheerleaders in wheelchairs, skiers, basketball players, etc some on one leg, some in wheelchairs, and allow your child to become technology friendly. There are many programs that assist in the world of technology. Don’t be afraid to let them use them.
  10.  Different – every one is different. Take that attitude. Everyone has a disability whether it’s diabetes, allergies, vision, or whatever. When the world starts to accept the fact that everyone has a problem and there isn’t any such thing as normal it becomes easier to cope with.
  11. Financial – now a days there are many programs to assist with the financial burden of caring for a severely disabled child. Parents should become educated into what is available at an early age and utilize these avenues. However, if you have a child whose medical needs are so extreme it may be easier financially to institutionalize them then look at all the options without guilt.

Last but not least:

12. Blame – don’t look back, don’t think of what might have been, or could have been, or whose fault is it. GET OVER IT! The Lord has blessed you with a special child for a reason. Learn to accept it. You will find a greater love than you ever knew existed. However, don’t take on what you know you can’t handle. I am reminded of a family who kept their severely handicapped bedridden daughter at home. However, every year they would institutionalize her for one month for a vacation. No the mother was able to deal with this but it was interfering in the marriage and as the daughter got older it became much more difficult. The year when I was working in the Institutions Hospital Ward, they came and the daughter started to die as soon as they left her. She knew the environment was different and her parents were gone. She didn’t eat right. She got sick and the parents returned early. What you maybe able to handle when they are small may not be what you can continue once they enter adolescence. Look at all the aspects and decided what is in everyone’s best interest not for now but for ten years down the road.

In part I

I have only referred to children. I will be addressing adults in part II. There is quite a difference with adults; whether they are born with a disability or develop one later in life. So for now concentrate on the children. Allow them to be children. Love them, nurture them and spoil them but don’t forget to discipline them.  Until next time.

Here’s to coping with your special child.

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