Entry #1- Chapter One

What are the special burdens of families with children who are disabled?
Families who have children who are disabled struggle with many burdens on a day to day basis. They have to approach life, and day to day activities in a different manor than most households. Every family and house has a way of going about day to day activities such as meals, school work, bedtimes, and other activities. Having a child with autism, health impairment, physical impairment, emotional impairment, etc. adds a whole new level of difficulty to the family structure.
One other difficulty parents face is providing daily care for the child. Being scared that they can't and finding the time to getting every task and every activity done in the hours of the day.When a child is at a very young age and they begin to eat table food very often eating by themselves with little assistance is not a problem. my boyfriend has three small nieces who are three, two and one. All three of them are very capable of when given there meals eating by themselves. Now of course there are times when eating is a challenge as with all small children. But the action of feeding themselves they are still capable of. As with Roger one of the boys described in the text he is at the age where he would normally be capable of eating on his own but due to the fact that he has trouble controlling the tools in which he needs in order to eat his meals, he needs the assistance of an adult. All though this may not seem like a big deal, and in the large picture it is not, but when you think about it this just adds to the difficulty this family has. If he can not feed himself than it takes longer for every meal to take place and than this just continues to carry on to every thing else in the day.
There are also much larger problems that families with disabilities face. This includes large medical bills, parents must play a much larger role in the education of their children. It is up to them to make a difference in their child's life.
It is common for family members to add to the damaging behaviors of the disabled child rather them aiding them with no intention to do this at all. "If the child is aggressive, hyperactive, and non communicative, the chances are strong that such behavior will be met with counter aggression and hostility, which can tend to make the child's original behaviors worse (Kirk, 2009, p. 15)." It is often difficult for families to realize and learn the best ways to deal with the behaviors of their child.
The family is the most important aid to a child with a disability. The family is like their backbone and without them they would be no where. There are many struggles that are put on these child's family but it is important to understand that these child are still human beings who can not help the state they need and need the same amount of love and affection as every other person in this world. It is the family structure that is best capable of doing so. "The child is always a child first and a child with problems second(Kirk, 2009, 18)."
How do parents and siblings respond to the presence of a child with disabilities in the family?
I believe that when a parent first finds out that they have given birth to a child with exceptional needs, it is not that they are devastated necessarily because of the fact that their child is disabled. My belief is what the vision of that perfect healthy baby is crushed. They are suddenly struggling with more than they ever imagined would be placed on their shoulders. Once they are given the knowledge and the tools to take care of the child their nerves are calmed and they understand that this is the new path that needs to be taken by them.
Within the text it is stated that most parents who must cope with a child with disabilities face to problems. One is the "symbolic death" of the child who was to be and the second is the problem of providing daily care of the child. it is often very difficult for parents accept the fact that here child may never be capable of being a independent adult and mature at the same level as other child at the same age. I don't think that anyone can truly know this feeling unless they go through it themselves. Parents with at normal levels can never truly understand what a parent of an exceptional needs student is going through.
Siblings often struggle with having a sibling with exceptional needs. This often roots from the fact that they are unsure of what is ahead and what there role within their siblings life is. Siblings cope much better when there parents lay everything out right in front of them. When they are unsure feeling as if they are going to have a lot more responsibilities, not have time for themselves with their parents and don't know what is ahead it is possible that they will come to resent their exceptional needs sibling. Often times it is possible for child to not verbally say what they are feeling and to just start acting differently and maybe even distant from the family. "It is the parent' responsibility to try to answer even unverbalized questions that the brother or sister may have about the child with disabilities and how that special child is affecting and will affect the family system(Kirk, 2009, p. 23)." It is often scary for child to except this whole knew aspect of their life but when everything is clearly explained to them I believe that acceptance is much easier to come to.