Add To Cart


Section 11
Adjustment of Children with Disabilities

Question 11 | Test | Table of Contents

Stages of adjustment they found are very much like the stages of accepting death and dying if you read Kubler-Ross’ work about death and dying. Withdrawal or rejection may be the first stage. If the child is a newborn in the neo-natal intensive care unit, if a family just can’t accept that, then they may not visit the child, they may be hesitant to hold the child, they may be fearful of getting emotionally attached to the child if they think the child may not live or if the child is going to be different.

Denial is the next stage. The less, imperfect child is unacceptable and so they’ll do the doctor shopping just looking for a doctor to tell me something different. Tell me my child is not going to be like this. Tell me the first doctor was wrong. Rationalizations about it, well the child will be different in another week, or two weeks, or a month, or a year. Fear and frustration, and also guilt. There’s oftentimes a lot of guilt in the parents who give birth to a child who isn’t perfect. Clients need to be able to express these feelings and also there’s a sense of blame sometimes, we all feel the need to blame someone when something goes wrong in our family and so sometimes the parents may blame each other, there may be some of that going on that’s not verbally addressed but just kind of under the surface but it helps sometimes to get these feelings out to be spoken about, when it’s just tacet, you can’t work with it. So as a counselor, you have to get people down there to those feelings so they can put them out there and can be free of them. So if you feel like there is something going on beneath the surface, don’t be too afraid to go down there and to look for what’s going on, look for the issue that’s really getting in the way of the family adjusting.

And eventually, hopefully, the family can move towards adjustment where you learn to tolerate the shortcomings of the child but then celebrate whatever assets and abilities the child has. Where you begin to see the positive parts of the child’s life and what they bring to your family, rather than dwelling on those negative extra, the hard work, the guilt, the blaming, all of the negative feelings that go along with the child.

Some of the areas, this is just really back to basics, when you’re working with a family, seven areas that they suggest that you asses: sleep disturbance, how many people have been sleep deprived for any amount of time in your life and how do you function when you’re sleep deprived, so if you’re all running on two or three hours of sleep because a child needs around the clock care, even if it’s a healthy, newborn baby, sleep disturbances happen, you can’t function well and you’re not going to be able to function well as a family if no one is getting a good night's sleep.

The physical burdens involved in caring for a child who may be disabled physically, there may be more lifting, carrying, hard work, the physical bathing, just taking care of someone. I worked with a family with two fourteen year old twin boys, one boy was on the school football team and one boy had cerebral palsy and could not move anything but his hands a little bit and it was very difficult for the family to see one healthy boy born one minute then this other child born a few minutes later who wasn’t as able but there was physical labor involved, there were three kids and a single parent and they all had to help care for the child. They had to go round the clock schedule and there was a lot of resentment and anger among the healthy children that this other child got so much attention. A lot of it where they were tired, they were worn out, this boy weighed 180 pounds, it was a lot of work getting him from the wheelchair to the car to his bath. Be aware the physical burdens.

Complicated diet sometimes can make sometimes just daily housekeeping a big chore. Extra housekeeping again, financial stresses, house and auto adaptations, and unpredictability of disorder and illness, not knowing how your child will be tomorrow can be very really nervous, make it hard for parents.

Whatever you do, assess all these areas and then gear your interventions to each family's unique needs. Don’t assume well Holly this is a type of disorder your child has, here’s a step-by-step guide of what you’re going to do to cope. I need to understand you on many different levels, many different aspects of your life to give you the kind of guide that’s going to help you and you’ll co-create the guide. I can’t tell you what to do, we’ll talk about what’s gonna work for you and your family. Be willing to talk about these things.

Steps in helping the family cope.
1. Build a strong, trusting relationship. As a counselor, you’ll see that every different family you work with, every client, it’s really important to let the family know they can trust you because when a family is dealing with being different, they get kind of afraid of people’s reactions, they can’t guarantee when they’ll be accepted. So let them know that you’re there for them.
2. Verbalize the emotional/factual aspects of the problem, help them weigh the burden. Don’t just say, “Well your child has this disorder.” What does it mean to you? What does this mean for your family? Help them see what this meaning has for them.
3. Identify alternative actions you may need with other sources, such as occupational therapy, speech therapy, physical therapy, etc. There are a lot of wonderful resources out in the community, but families sometimes have to be made aware that they’re available and sometimes they need you to encourage them to seek help. “I don’t want to be a burden,” they might say or “Oh it probably won’t help my child.” They’ll have reasons, it's easier sometimes just to sit and be. The inertia can really hit when you have this kind of burden. Encourage them, advocate for them, help them advocate for themselves.

Evaluate the alternatives with them. Have them commit to a plan. Have them agree these are the steps I’m gonna follow to help get through this crisis.

And lastly, we would like the client to summarize the progress made, to evaluate your goal attainment, and then you might cycle back through if another problem creeps up. But by having the client talk about their own progress and evaluate what they’re doing, that’s having them take an active role in seeking help. It’s helping them learn that they can take care of their family and themselves by taking action.

Help them accept their child and focus on improving interaction. You go through helping, accept, there are things you can do. Accept your child, there are things we can do to help you make the interactions and the prognosis much better.

Below are the PowerPoints that accompany the instructor's lecture for this section.



Degges-White, S. (2008). Working with Culturally Diverse Families. Lecture presented at the Indiana Counseling Association Annual Conference.
Reviewed 2023

Update
Coping strategies in parents of children with disabilities: A case-control study

Alós, F. J., García, A. G., & Maldonado, M. A. (2022). Coping strategies in parents of children with disabilities: A case-control study. Brain and behavior, 12(8), e2701. https://doi.org/10.1002/brb3.2701


Peer-Reviewed Journal Article References:
Johnson, H. L., & DeLeon, P. H. (2016). Accessing care for children with special health care needs. Practice Innovations, 1(2), 105–116.

Huguley, J. P., Wang, M.-T., Vasquez, A. C., & Guo, J. (2019). Parental ethnic–racial socialization practices and the construction of children of color’s ethnic–racial identity: A research synthesis and meta-analysis. Psychological Bulletin, 145(5), 437–458.

Li, X., Lam, C. B., Chung, K. K. H., & Leung, C. (2019). Linking parents’ self-stigma to the adjustment of children with disabilities. American Journal of Orthopsychiatry, 89(2), 212–221.

Weinstein, D. (2018). Sexuality, therapeutic culture, and family ties in the United States after 1973. History of Psychology, 21(3), 273–289.

QUESTION 11
What are two characteristics of the Adjustment Stage after parents discover their child has special needs? To select and enter your answer go to Test.

Test
Section 12
Table of Contents
Top