Raising a Child with a Disability: Opportunity in the Struggle

Father and son reading togetherChildren with disabilities bring a unique set of challenges, and opportunities, to their families. Depending on the nature of the disability, the challenges can be quite significant. At the same time, though, they have the potential to deepen connection between parents as well as the parent-child bond.

Aside from the energy required to manage a child’s physical and emotional needs, there are often huge financial considerations. A child’s disability may require the family to retrofit their home, or obtain housing that is accessible. In addition, equipment, social services, and health care are often pricey and are not always covered by insurance or entitlement programs. Families able to get some or all of these expenses covered often have to advocate for them on their own, and navigating disorganized government programs associated with these benefits can be an extremely taxing process in its own right.

Because it can be quite time consuming to address these issues, many families are forced to give up large portions of their leisure time. Often, one parent takes on a primary caretaking role with the child, while the other parent becomes the primary provider, deeply involved in his or her work in order to help with the finances. Primary caretakers sometimes have to partially or completely forgo any job aspirations of their own.

If these decisions are not talked about and processed carefully, they can lead to divisions within the family that may become deeply entrenched and long-lasting. Caretakers may feel as if they do an unfair amount of the work for the child, and may feel resentful about having to sacrifice their careers. Providers, meanwhile, may feel isolated within their families, as though everyone is against them, and may come to perceive the bond between the caretaking parent and the child as impenetrable.

The Importance of Communication

To help with this, I suggest that parents openly discuss how caretaking responsibilities are divided. Are there ways to make these responsibilities more evenly managed? What types of feelings does each person have about it? These are important considerations that should be discussed regularly.

Another consideration for parents is the emotional impact of having a child with a disability. Parents sometimes have to adjust their expectations regarding what their child can become, which is frequently experienced as loss and may be accompanied by a mourning process. The process of adjusting expectations to conform to the reality of the circumstances can be challenging and varied depending on the nature of the disability.

Regardless of the specific disability, the family has to come to accept that the child’s life may be limited in some way, and that additional care may be needed for the remainder of the child’s life. This process can be a loaded one and has potential to drive parents apart.

In general, the more ambiguity in the disability, the more difficult it is for the family to adjust. Degenerative diseases, which are less understood than more standard physical disabilities, can be among the most difficult to adjust to. The lack of information about how quickly the disease will develop and impact the child’s life can create enormous anxiety and stress. Cognitive disorders such as mental retardation are also difficult in that parents often cannot tell how much information their children take in.

Regardless of the specific disability, the family has to come to accept that the child’s life may be limited in some way, and that additional care may be needed for the remainder of the child’s life. This process can be a loaded one and has potential to drive parents apart. I suggest that couples set time aside regularly to discuss their feelings about their child’s disability, either in counseling or on their own.

Much is made of accomplishments in Western society, and children are too often measured by what they do instead of who they are. If couples keep an open line of communication and feelings regarding the challenges they face, the experience of parenting a child with a disability can bring them closer together and help them learn to accept and love their child for who they are.

References:

  1. Boyse, K. (2009). Siblings of Kids with Special Needs. Retrieved from http://www.med.umich.edu/yourchild/topics/specneed.htm
  2. Reichman, N., Corman, H., & Noonan, K. (2008). The Impact of Child Disability on the Family. Retrieved from http://www.medscape.com/viewarticle/581577_2
  3. Solomon, A. (2013). Far From the Tree. New York, NY: Scribner.

© Copyright 2016 GoodTherapy.org. All rights reserved. Permission to publish granted by James Wells, LCSW, therapist in New York City, New York

The preceding article was solely written by the author named above. Any views and opinions expressed are not necessarily shared by GoodTherapy.org. Questions or concerns about the preceding article can be directed to the author or posted as a comment below.

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  • Trtina

    Trtina

    January 26th, 2016 at 9:40 AM

    The tirelessness and dedication shown by so many of these parents is really just astounding. Kudos for them being the best parents that they can be to the children that have been given to them. That takes a very special family!

  • Mason

    Mason

    January 26th, 2016 at 3:33 PM

    How uplifting- and to be a friend to a friend in need? There is nothing more rewarding than to know that you are helping make a lasting and positive change in the life of someone that you care for.

  • Rena

    Rena

    January 27th, 2016 at 6:58 AM

    Let us not forget that this can be a very difficult situation for parents to endure.

  • Liv

    Liv

    January 28th, 2016 at 7:16 AM

    We have been so fortunate to have a group of wonderful help provided by our state to help with our son’s needs. They have care here at the house and in their offices, and we have always been so fortunate to have a supportive team helping us get through this. I will not ever say that it is an easy thing, but it does make it easier and so much more manageable when you know that there is a team behind you supporting you and helping you at times when you know you need it the most.

  • Rhodes

    Rhodes

    January 29th, 2016 at 7:49 AM

    It can be a very sad situation when the parents are sort of pitted against one another, like they feel that one has a stronger bond with the child or that the other has to work much harder outside of the home. I am sure that most families try very hard to maintain some balance of the workload but it is only natural that the child will come to depend on one parent over the other, especially if that is the person who is there with them all the time.

  • charity

    charity

    January 30th, 2016 at 8:32 AM

    It does give you some time to look very hard at yourself and discover all of the=is strength that you may have never known that you had. I mean, there will be days where if you don’t have it in you then who else is there to do it for you? No one so you pull yourself up and you do the things that have to be done. This may not be something that you could have ever envisioned for yourself, but here it is and it is your child and so you have to do the things to keep him or her alive and thriving.

  • Laird

    Laird

    January 31st, 2016 at 5:44 PM

    You can look at this as something that is terribly disappointing to you or n you can choose to see the world through totally different eyes. This could be what you have been trained to do for all of your life but just didn’t know it until you had to. Taking care of a disabled child in your life can at once be taxing and exhilarating, but always something to feel good about, because you know that you are everything that this child has, and it is up to you to make a lasting positive impact on his or her life.

  • Mary

    Mary

    February 3rd, 2016 at 6:39 AM

    This article focuses on the parents and the disabled child. What about the siblings? My mother smothered my sister, with minor CP, with too much attention, expecting us siblings to do the same at the expense of our own basic needs.
    I really admire families that make the sacrifices needed to care for the disabled while making every family member feel valued. No child should feel as if their life was a mistake!

  • joan

    joan

    February 3rd, 2016 at 2:22 PM

    you are right Mary- no one should ever be made ti feel like their life is less important than another. So sorry that this happened to you.

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