PARENT CHILD RELATIONS - Online Special Needs

Parenting Children with Special Needs
To accompany Chapter 10

There are many ways that we refer to children who have special needs – exceptional children; children with handicaps; children with disabilities. It is important to understand the term parents and children prefer. Recently, there has been emphasis on understanding that rather than saying “special needs child,” we say “child with special needs.” This puts the emphasis on the child first rather than the special need. It is also important to understand that there are many categories of special needs and a variety of strategies that might be used by families to encourage optimal development of the child.

This lecture offers some general information about exceptionalities and discusses some of the common problems that families face when they have a child with a special need.

Categories of Special Needs: (1-7 from Hallahan and Kauffman (1994) Exceptional Children: Introduction to Special Education)

1. Physical disabilities – these are limitations that affect a child’s learning or school attendance because they need special equipment, training or special services.
2. Mental retardation – children who have significant subaverage intelligence (below 70-75 IQ). Mental retardation can be mild, moderate or severe.
3. Learning disabilities – children who have significant academic difficulty, but have intelligence within normal range. This is sometimes coupled with behavior problems.
4. Communicative disorders – speech and language impairment
5. Deafness – little or no hearing even with hearing aids
6. Visual impairment/blindness – With impairment the child can read by using large-print books or magnifying glasses. Blindness means that the child’s vision is so impaired that they must read with Braille or use audiotapes.
7. Emotional and behavioral disorders – This would include schizophrenic children and other children whose behaviors adversely affect their educational ability.
8. Developmental delays – Children who have significant delays in physical, cognitive, or social-emotional development. They need special education and other services.
9. Chronic illness - These children are often in the hospital, separated from their parents, may have to undergo painful medical procedures, miss school, may regress in behavior, cause economic strain in family
10. Gifted children – children who have high ability intellectually or who excel in creative or artistic areas. They often need school services that present them with more challenge than the regular curriculum.

Difficulties for Parents:
Parents who are raising a child with special needs face special challenges. The following essay describes how many parents feel when they give birth to a child with a special need.

Welcome to Holland by Emily Pearl Kingsley

            “I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this . . . .
            “When you’re going to have a baby, it’s like planning a fabulous vacation – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum. The Michaelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
            “After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The flight attendant comes in and says, “Welcome to Holland.”
            “Holland?!” you say. “What do you mean, Holland? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.
            “But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.
            “The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.
            “So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
            “It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.
            “But everyone you know is busy coming and going from Italy, and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say, “Yes that’s where I was supposed to go. That’s what I had planned.
            “And the pain of that will never, ever, ever go away, because the loss of that dream is a very significant loss.
            “But if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.”

Some of the situations parents of children with special needs face are:

Anticipation of what baby will be like; imagining the new family, mom, dad and baby; and having to readjust expectations once child is born. Research shows that parents with higher education tend to be more disappointed and feel more stress over having a disabled child than parents who are less educated.
First time parents may not have a basis for comparison when evaluating their child’s behavior (i.e., thinking a short attention span is defiant behavior rather than being symptomatic of a physical or emotional problem)
Not getting cues from the child to indicate wants, needs, emotions (smiles, gestures, sounds). The child who has a flat affect or is unresponsive may cause the parent to feel rejected or frustrated because they can’t read their child very easily.
Sometimes parents have a hard time seeing past the disability and may see their child and as an accident or tragedy rather than as a person (in one study a mom said she kept seeing her child as his disease or a collection of symptoms rather than as a child)
Denial and grief are common first reactions (sometimes parents even refuse to acknowledge the situation with their child, even refusing the say the words “muscular dystrophy” or “Down Syndrome” - almost a belief that if they don’t acknowledge it, it will go away)
Dealing with other peoples’ reactions to their child. Sometimes parents are so worried about what grandma will think, or how their child will compare with his or her cousins that they become less effective as parents. Parents of children with special needs should work to have supportive people around them; people who are encouraging rather than discouraging.
Sometimes parents see themselves in a negative way for having a child with a disability. It is not uncommon for parents whose child is born with a disability to blame themselves. Mothers in particular, may think that the child has the disability because of something they did or didn’t do during the pregnancy. While it is sometimes the case that mom smoking or drinking during pregnancy is the cause of a child’s disability, many times a child is born with a disability and there is no way of knowing why it happened. Parents need to get past the guilty feelings and figure out how to best parent their child.
Parents sometimes see the child in a negative way; may feel actual dislike for the child and feel guilty for having negative feelings toward the child. If a parent can’t overcome their negative feelings toward the child, outside intervention is probably warranted.
Parents face the challenge of accepting the child’s disability and dealing with it as best they can. They also face the challenge of spending time with other children in the family. It is not uncommon for parents to find themselves neglecting their other children because the child with the special need takes up so much of their time and efforts. It is important for parents to seek out respite care for the child with special needs and make an effort to spend quality time with their typically developing children.
Marital and family tension and stress increases after birth of disabled child; and a couple relationship that was strong before child was born has a better chance of surviving. If there were stress or problems in the couple relationship before the child was born, the relationship is at higher risk of falling apart. Relationships tend to decrease in quality or disintegrate when many stresses pile up on top of one another.
Moms often report feeling trapped by their lives; feeling that they’ll never be free; and have feelings of helplessness and depression. Research shows that fathers feel less distressed over the situation of having a child with special needs than mothers. This is because most of the time, the bulk of caring for the child falls on the mom. Moms, however, are shown to be more flexible when dealing with the child and the disability and react more effectively to their child.

Siblings
When a child with special needs is born into a family, very often the forgotten people in the family are the child’s siblings. Parents need to spend so much time with the child with special needs that the other children may feel neglected or shunted aside in favor of their sibling. It is not uncommon for siblings of children with special needs to experience the following reactions.

Feelings of ambivalence about their sibling. They know they should love their sibling, but may feel resentment, frustration, and even hatred for the child. Parents often become upset if the typically developing child says something like, “I hate my brother,” or “I wish she’d never been born.” While it is a common reaction to get angry at the child who says this sort of thing, it is important for parents to try to put themselves in the place of that child and understand where those feelings and behaviors are coming from. Some one-on-one time with each parent on a regular basis is important so that parents can maintain positive relations with all their children.
Siblings of children with special needs may resent the time and energy it takes from the parent and feel neglected.
Sisters tend to have more responsibility in the family than brothers and are more likely to become discouraged and depressed because they are expected to pick up the slack when mom has to care for the sibling with special needs. It is not unusual for daughters in the family to become responsible for caring for the other children, making meals, getting siblings off to school, etc. Parents need to take care not to force too many responsibilities on their daughters in these situations.
Siblings have to deal with other kids’ reactions to their sibling with special needs. When other kids make fun of their sibling, they often are torn between feeling ashamed of their sibling and feeling they have to defend their sibling.
Parents sometimes won’t let siblings talk about their feelings, particularly negative feelings. Upon hearing something negative from their child, they may say “You don’t really mean that about your brother,” or “You have to love your sister all the time; if you say something negative, it will hurt her feelings.” Parents need to realize that, just as in a family that has children with no special needs, in the family with a child with special needs, siblings are not always going to get along. There will be times when they fight or say they hate each other. Parents sometimes don’t have the energy to deal with the negative feelings of their typically developing child as well as the other child’s disability.
Kids sometimes need outside counseling to deal with their feelings (in one study a girl said she felt hatred toward her sister for “ruining her life”). Kids need to understand that it’s natural to have negative feelings toward the sibling with special needs. They also need to learn ways to deal with those feelings and develop and nurture a positive relationship with their sibling.

What Parents Need Help With
Parenting a child with special needs is often a frustrating experience. Parents say they can’t get a clear diagnosis for their child; they have difficulty dealing with their child’s school; they aren’t sure what social services are available to them. Here are some of the worries parents often have in this situation.

Needing a better prognosis for their child. Parents often say they have difficulty getting a good idea from their child’s doctor of how their child’ will progress. They want to know what life will be like for their child a year, five years, ten years down the road. They express much frustration at not knowing what expectations to have of their child. To be fair, doctors sometimes aren’t able to give a definitive answer to a parent’s questions. For some disabilities there is a wide range of potential development, and in some instances, treatments for one child may not work as well for another.
Needing more support from extended family members. Very often parents of a child with special needs feel all alone with their situation. Family members sometimes aren’t sure what they can do to help, and sometimes family members have no desire to help. I had a student a few years ago who had this very difficulty. She and her husband had adopted four children, all of whom had special needs. The special needs varied (learning disabilities, mental retardation, hearing difficulties). She and her husband were very committed to raising their children so that they could develop as fully as possible, given their particular special need. Her parents, who had been looking forward to becoming grandparents, were so disappointed that she had adopted children with special needs, they closed off communication with her and her family. They didn’t feel equipped to be grandparents of children with disabilities. This, of course, was a very sad situation for my student and her husband. But in many ways it was a bigger loss for the grandparents. They were missing out on what could have been a precious experience.
Needing better professional support. Parents say they don’t always get enough information; they often feel rushed when talking with medical professionals. They sometimes find it difficult to get information about support networks, resources that would be helpful. With the internet, parents now have the ability to find a great deal of information on a wide range of topics. It is easier nowadays for parents to gather information and then develop questions for medical personnel based on the information they’ve gathered.
ifficulty in dealing with child’s school. Parents of children with disabilities have rights under the law. There are laws in place that guarantee all children an equal, appropriate education. In some instances schools are very supportive of parents and children with special needs and work hard to accommodate their needs. In other situations, schools are resistant to putting in ramps for wheelchairs, accommodating children who need aides in the classroom, etc. Cost is often cited as a factor when schools don’t comply with the law.
Parents say they sometimes get double messages from medical personnel. They hear phrases like “parents are crucial for helping their child” and then they hear phrases like “parents are inadequate and ill-equipped to meet their child’s needs.” It is hard for them to know whether they are needed or are seen as in the way.
Parents also state that they encounter professionals who see them as obstacles to the child’s treatment. Ideally, the medical personnel and other professionals who work with the child will welcome the parent as part of the team. The best thing for the child is when the parents and all the other individuals who have a connection with their child can work together on helping the child to be the best he or she can be.

Things that Help Parents

1. Open, honest communication at all levels (doctors, nurses, family members, school personnel).
2. Learning where resources are that will help.

- need to know how to enrich child’s environment
- need to know how to communicate with child

3. Developing resiliency; and being realistic about their situation and going on from there.
4. Working with the challenge of their special child, rather than fighting it.
5. Being persistent with people who are supposed to help the child:

- social services
- doctors
- schools
- testing centers. In the past I’ve shown a video in my class that is about parents talking about raising their children with special needs. One mom tells the story of the day her child, who was in a wheelchair, needed to have some cognitive tests done. She arrived at the agency where the testing was to take place, but found that there was no ramp for her son’s wheelchair. She asked how she was supposed to get him up the stairs, especially since she had two other children with her at the time. She was told that she’d have to carry him. This was pretty much impossible because of his chair, and having to hold the hands of her other children. She explained that legally they needed to have a testing room accessible to children in wheelchairs. After making a big of a fuss about the situation, someone finally found a cramped storage room on the first floor where her son was given the test. The testing conditions were poor and he ended up scoring much lower than she thought he could have if he’d been able to take the test in a regular room. She and her husband garnered attention and support from others in the community to make the testing center accessible. They managed to get local news organizations to publicize the story and soon after that the center was made accessible. And while this is a success story for these parents, the fact remains that it shouldn’t take that much trouble to make someone uphold the law.

6. Many parents say that finding support groups of other parents in similar situations is the most helpful thing for them. Having other parents to talk with and trade ideas and solutions to problems with keeps them sane.