“Rose” and “Steve” came to American Counseling Association member Laura Marshak for couples counseling because they felt they had been growing further and further apart ever since their son, “Sammy,” who was now in elementary school, had been born with cerebral palsy. Out of necessity, Steve had become the primary breadwinner for the family, while Rose left her job to provide the extensive care that Sammy required.

Over time, Steve buried himself in his work, while Rose handled Sammy’s daily needs. She shuttled Sammy to his appointments for speech therapy, physical therapy and other specialized services and also took on the task of petitioning Sammy’s school for an Individualized Education Program. Rose felt she was doing all the heavy lifting and resented Steve because she thought he wasn’t helping enough with Sammy’s care. Steve, on the other hand, thought Rose didn’t appreciate how hard he was working to secure their financial future. Angry and resentful, they rarely spent time together as a couple, says Marshak, whose specialties include counseling parents of children with special needs as part of a group practice in Pittsburgh.

“They said it was too hard to find a qualified baby sitter who could handle their son’s medical complications,” recounts Marshak, who is also a counseling professor at Indiana University of Pennsylvania. “In reality, they did not have much to say to each other anymore and had lost an intimate connection.”

According to Marshak, the author of the recently published book Going Solo While Raising Children With Disabilities, Rose and Steve’s story is not unusual. Instead, it is an all-too-common experience shared by many other couples who have children with special needs.

As loved and wanted as these children may be, the unavoidable extra care they require can take a toll not just on parents but also on siblings and the family as a whole. When a child has special needs — whether physical, medical, intellectual, emotional or educational — parents may find it necessary to alter virtually every facet of family life. For these families, it can sometimes seem as if every resource, from time to money to even patience, are continually at risk of being exhausted. Depending on the severity of the child’s disability or special circumstance, the family may need access to intensive medical, health or other services such as occupational or speech therapy; specialized education and possibly job training; and help with daily tasks that other families may take for granted, from basic hygiene to learning and applying social skills.

Because efforts are understandably focused on navigating the day-to-day and moment-to-moment challenges of addressing their child’s special needs, another very important need can often get pushed to the side: maintaining the overall health and well-being of the individual family members and the family unit as a whole. Parents can struggle to take time for themselves while caring for their children. Marriages and partnerships can be tested or neglected. Siblings might struggle to cope with disparate levels of parental attention, feeling they have been left to face life’s challenges on their own. That’s why counselors can play such an important role in helping these families not just meet the special needs of their children, but also attain a better sense of equilibrium.

Addressing behavioral issues

Charmaine Solomon, a licensed professional counselor (LPC) and sole practitioner in Plano, Texas, says that when families of children with special needs come to see her, they are generally looking for help with the day-to-day issues. One issue that comes up frequently is discipline.

“Families with special needs children struggle to discipline in an appropriate manner,” Solomon says. “Because the child has special needs, they [the families] feel like they can’t hold them accountable.”

Solomon, a member of the Texas Counseling Association, a branch of ACA, has a now-grown son who suffered a traumatic brain injury as a child that left him disabled. This personal experience has informed her counseling practice. One of Solomon’s areas of focus is working with children and adults who have special needs such as autism and intellectual disabilities. She is also one of the founding members of My Possibilities, a continuing education day program for adults with special needs located in Plano.

Considering everything else that the parents may be struggling to manage, a child’s acting-out behaviors may seem like a relatively minor problem, particularly when the child is young, Solomon says. However, as the child gets older, this lack of discipline may become virtually unmanageable or, in some cases, even lead to violence, she notes.

Parents who focus on punishment when their child with special needs is acting out or showing aggression may find themselves locked in an escalating punishment cycle until seemingly the only solution left is to ground the child for life, says Erik Young, an LPC in West Chester, Pennsylvania. He has worked with individuals with special needs and their families for the past 20 years, including in a rehabilitation center, a life-skills training organization, a behavioral health care organization and, for the past four years, as a private practitioner. Young and his wife have also provided foster care for several children with special needs.

When parents come to Young for assistance with their children’s behavioral problems, he helps them develop a behavioral plan, which will vary according to the child’s problem behavior and capabilities. For example, many children with intellectual disabilities possess poor verbal communication skills, and their inability to communicate effectively may be part of the behavior problem, he says. Young frequently works on communication skills with the child and parents, giving the child a book or tablet device with pictures that the child can use to indicate what he or she wants.

Discipline strategies will vary from child to child, says Solomon, but should typically focus on reward and reinforcement rather than exclusively punitive measures. For example, parents should focus on what the child really enjoys, such as spending time on an iPad, and start by setting a time limit on the activity, Solomon explains. If the child displays the desired behavior, the limit will be increased, but problematic behavior will result in decreased time with the pleasurable activity, she says.

When appropriate, Young likes to use cognitive behavior therapy (CBT) to uncover what the trigger or cause of the child’s behavior problem might be. Conversely, it may be that a child’s behavior is not truly problematic but is simply angering or frustrating to the parent for some reason, so he will also use CBT to help the parent understand why. Young will then develop a behavioral plan that may include teaching the child and parents strategies for anger management, emotional regulation and so on.

Robert Jason Grant, an LPC and sole practitioner in Nixa, Missouri, also works with both the child (mainly children who are on the autism spectrum) and the child’s parents to explore factors that contribute to behavioral issues. For instance, he explains, punishment for certain behaviors isn’t successful with children who have autism because these children engage in impulsive behavior.

“[The behavior] is not thought out and may even be a surprise to the child,” says Grant, a member of ACA. “They may not even have time to think about consequences.”

Instead, Grant says, behavioral work should focus on what is causing or contributing to the problem. Because children with autism typically possess little or no ability to regulate emotions or process sensory input, emotional and sensory dysregulation are often the main contributing factors to these children’s discipline problems, he says.

“What tends to create dysregulation, and how do we change that?” Grant asks. “Is it environmental? Do we need to provide sensory breaks? … A sensory break could be something as simple and basic as a private quiet room, let’s say in school, where the child can go to be by [himself or herself], with no other people and no one coming to talk.”

Sometimes, all these children need is to “reset,” Grant says, and that can take as little as 10 minutes.

Grant also works with children and parents to tackle the dysfunction head on. He has designed a specific approach that he calls AutPlay, which is a combination of behavior and play therapy for children who have autism. The play therapy tools he uses include objects such as weighted vests, weighted balls and other sensory toys because children who are on the autism spectrum find these items soothing, he says. Parents can use these toys at home to continue the therapy, and that is important because dysregulation requires constant maintenance, he says.

The benefits of effective discipline go beyond managing specific behavioral issues, Solomon says. When parents discipline a child who has special needs, they are teaching him or her how to tell right from wrong and also how to accept instruction, she asserts. Knowing how to make decisions and how to follow instructions contribute to a child’s sense of independence, adds Solomon, who believes that parents should always be working toward increasing the child’s level of independence.

For instance, some children with special needs may require help feeding or dressing themselves beyond the age that is typical for completing those activities independently, Solomon says. Although it is often easier to continue to dress and feed a child who has difficulties, parents should keep working toward teaching the child to do these things on his or her own, she asserts. Solomon acknowledges that this process can take a little — or a lot — longer, but in many cases, she says, the child will eventually have the capability to do it. The same holds true for many other self-care and independent activities that will ultimately benefit the child, she says.

Letting children with special needs do everything they are able to do can also bolster their self-image, says Susan Stuntzner, an assistant professor in the School of Rehabilitation Services and Counseling at the University of Texas, Rio Grande Valley. On the flip side, automatically doing everything for a child who has a disability can send negative messages about his or her capabilities and value and also create a sense of learned helplessness, she says.

Family needs

As children become more self-sufficient, this generally eases the pressure on parents. But parents of children with special needs sometimes come to believe that they are the only ones who can — or should — provide adequate care for their child, Solomon says. Unfortunately, being constantly on call, and with no relief in sight, tends to only cause more problems, she says.

Young says that although families may initially come to counseling for help with a specific problem such as discipline, he also probes for any other stressors with which the family is having difficulty coping, either as a group or individually.

There really is no way to fully prepare for the needs of a child with a disability until you have to do it, he says. Families are suddenly faced with the need to obtain — among other things — health, medical and disability services, Young explains. Further complicating matters is the fact that there is no one central place to obtain services. Disability and educational assistance vary from state to state, and health and medical services are usually secured through insurance plans with varying levels of benefits, Young and Solomon point out.

In addition to coordinating outside services, parents must come up with a plan for meeting the child’s daily needs, Young says. Children with special needs may require additional help with daily activities such as getting dressed or even eating. Children with disabilities may need constant care, meaning someone has to be watching them at all times, Young adds. This means spouses and families may have to engage in tough discussions and make significant compromises. For instance, who stays home to provide care to the child? Who will be on call to take the child to any therapy that he or she might require? To address these needs, one parent will often stop working, which can creates an additional source of stress: money and finances.

Caring for a child with special needs can be a 24-hour job that many families assume they can and should engage in alone, Solomon says. But if all of the family’s time and attention is spent on taking care of the child, who is taking care of the family?

“Oftentimes, families are trying to figure out how to tend to their family member’s needs and concerns to the point that they forget they have their own set of needs,” says Stuntzner, an ACA member who also writes and speaks about living with a disability. “As a result, families … may experience personal or caregiver burnout.” In fact, if parents consistently ignore their own needs, they may eventually grow resentful of how much help their child requires, she warns.

Young works with families who are dealing with a child’s special needs or circumstances to help them recognize that they don’t have to do it alone and that resources are available to them. He points out that he, or any other counselor, can offer the family a neutral source of support — someone to talk to who doesn’t have any kind of emotional attachment or agenda but understands what the family is going through. Because Young also has connections (from his time working in a rehabilitation center and a behavioral health care organization) to state and local agencies that help provide services, he can point these families in the right direction. He even keeps a binder of business cards that he has gathered over time, based on personal or client experience, for tradespeople such as plumbers and handymen who are used to coming to homes with children with special needs and who won’t be disturbed by outbursts or other behaviors that might be regarded as outside the norm.

A system of support

When Grant works with parents of children with autism or other special needs, he always emphasizes the importance of self-care. He teaches parents how to conduct a self-care inventory so they will start actively thinking about caring for themselves.

Encouraging family members to engage in self-care sometimes requires a shift in perspective. For instance, self-care can mean something as small as taking a few moments during the day to indulge in something the individual really enjoys, Young notes. “Instead of a week on the beach — because that’s probably not going to happen — what can they do during the day? [It’s] just little moments that can be refreshing,” he says.

When a child is born with special needs, becomes disabled or is diagnosed with a disorder, Young says, it is common for extended family members and friends to draw back at first, often because they feel like outsiders and aren’t sure what they can do to help. So Young encourages families who have a child with special needs to actively reach out to others, explaining that maintaining a solid social network is crucial for both emotional and practical support.

“I often take my clients through the process of listing all potential resource people — no matter how disconnected — and talk about what they might be able to contribute,” he explains. “Then we go about ‘recruiting’ them so to speak. Find ways to utilize their talents and, thus, spread the stress. People generally want to help when they can. They may just need guidance.”

That’s why Young tells these families to let their networks know what they need specifically. “Take an executive role. You are president,” Young urges his clients. “These people are your Cabinet, your advisers. Make sure you’re getting them to do what you want.”

With a support network, parents can also build a system of respite care. Once a child is used to being with a caregiver, the parents can take breaks, possibly even getting away for a day trip or weekend vacation, Solomon says.

Sometimes families won’t seek any kind of support because they feel ashamed of their struggles, Solomon says. Rather than isolate themselves further, she encourages these clients to seek out others families of children with special needs. She suggests that parents contact local mental health agencies to find support networks.

Young says that lately he has been providing more couples counseling than family counseling because the primary issue for many of his families who are dealing with special needs is actually a problem with the parents’ marriage or partnership. The stress of caring for a child with special needs can take a particular toll on a couple’s relationship, he points out.

Solomon agrees, noting that respite care isn’t just important for parents as individuals but also as a couple. When providing focused care to a child with special needs, it can be particularly challenging to find the time or the energy to just be a couple, she says. Identifying someone who can provide caregiver support can allow couples to take much-needed time for date nights or even a short trip, she adds.

Parenting styles can also drive a wedge between couples who are caring for a child with special needs, says Young, who uses talk therapy with couples. If parents can’t agree on how best to care for or discipline their child, it creates a continual source of conflict, he says. Young helps couples learn to communicate with each other about what they want and need and how best to compromise, if needed.

“I like to use a variety of techniques that hone active listening and clear communication skills and trust,” he says. “One favorite technique I learned at an attachment therapy conference is to have the couple sit in chairs facing each other. One person communicates a brief statement, then the other person has to repeat it back. Then they switch roles. Even this simple exercise can highlight when assumptions are being made and communication is being blocked.”

Young also specifically addresses differing parenting styles with couples, such as when one partner is more authoritarian and the other is more nurturing. He works with these couples to develop a joint parenting style that is balanced — both authoritative and nurturing.

Young also works with the parents in session to practice planning for specific concerns. He asks them to think about how they were raised and how that influences the way they parent today. This exercise helps to spur conversations that can uncover differences in the way they view parenting, he says. Young then helps the couple to negotiate these differences.

Sometimes it’s not parenting style — but substance — that causes the problem. Solomon says disparate distribution of parental responsibility is often a source of tension in families managing special needs. She regularly sees mothers who take all the responsibility for caregiving — either by choice or necessity — which leaves little time for other relationships. Solomon tells her clients that parents need to share responsibility. For example, when possible, fathers should take a turn accompanying the child to therapy. If the mother is the sole caregiver during the day, the father should give her a break by taking on extra duties at night.

Marshak’s couple, Rose and Steve, offered an example of disparate responsibilities — or at least that was how it appeared to Rose. With Marshak’s help, the couple began to discuss the underlying tensions and motivations that had led them to their crisis point.

When Sammy was first born, Rose was deeply depressed and wanted to talk about her grief with Steve, explains Marshak, who co-authored the 2007 book Married With Special Needs Children: A Couple’s Guide to Keeping Connected with Fran Prezant, a speech and language pathologist and researcher on disability issues. Steve, however, preferred to avoid discussion and bury himself in his work. Rose thought Steve’s silence meant that he didn’t care about her or Sammy, but focusing on work and providing for his family was actually Steve’s coping mechanism to deal with his grief. As time passed, Rose spent her time learning as much as she could about cerebral palsy and seeking support through a network of other mothers who had children with the disease. Steve worried constantly about how to financially support his family in the present and how to make sure there would be money for his son in the future in case Sammy couldn’t support himself. So Steve worked even harder.

Guided by Marshak, the couple discussed all of these issues in counseling. Rose began to understand that work was Steve’s way of coping with his feelings of grief and worry and that even though he wasn’t sharing his grief verbally, that didn’t mean he wasn’t hurting. Steve learned to become more expressive with his feelings.

Rose and Steve also worked to re-establish their romantic connection by going out as a couple again and trying to view each other as the individuals with whom they had fallen in love — not just as Sammy’s parents, Marshak says. Over time, as they re-established their bond as a couple, they also started to adjust their roles, including sharing more of the responsibilities related to Sammy’s educational and medical needs. Rose even resumed some of the leisure activities she had given up when she felt she was solely responsible for Sammy’s care.

Speaking to siblings

When working with a family who has a child with special needs, it is also important for counselors to take time to focus on the needs of family members who may get overlooked, or at least feel like they are overlooked — siblings.

Grant sometimes works with siblings on their own so they will know they have an outlet for their struggles and frustrations. “One of the biggest challenges [for siblings of a child with special needs] is the feeling of having to take a step back, of giving up things for their sibling,” he says.

Out of necessity, the child with special needs is the family’s biggest area of focus. To the child’s siblings, this circumstance can seem not only unfair but also as if the parents are choosing to favor the child with the disability or special needs, Grant adds.

When Solomon’s son who is disabled was a child, his siblings struggled with feeling forgotten. “I had to teach my [other] sons the difference between ‘have to’ and ‘want to,’” she recalls. Solomon sat down with her sons and explained that it wasn’t a matter of wanting to spend less time with them but rather that their brother needed more of her time.

As the siblings of a child with special needs get older, they may also start to worry about or feel responsible for their brother or sister, Grant says. He regularly teaches siblings games that they can play with their brother or sister who has special needs that will help the child to cultivate specific skills. One such game is called Social Skills Fortune Tellers.

Grant teaches the “neurotypical” sibling — the fortune teller — how to make an origami structure with tented triangles that can be manipulated with the fingers so that different sides or flaps of the triangle show. Each flap holds a social skill to practice. The fortune teller manipulates the origami and reveals a skill, which the siblings then practice, Grant explains. As an alternative, the origami can also be used for emotions, he says. When a particular emotion is revealed, both the neurotypical sibling and the sibling with special needs can share a time when they felt that particular emotion or make a face that demonstrates that feeling.

Grant also uses family play therapy techniques to allow siblings — and all family members — to express how they are feeling or what they are thinking about issues such as how autism is affecting the family or how the parents are parenting. One technique is called “color my feelings.” Each family member uses a white piece of paper with a heart drawn on it. The family members color the hearts with whatever color best represents their feelings, he explains. The family members then share their hearts, allowing everyone an opportunity to talk about the feelings they are having and why they are experiencing those feelings.

Lifelong support

It is painful to contemplate, but there will come a time when the parents are no longer there to help their child with special needs, Solomon says. That is why she is adamant about encouraging her clients to plan for that future now.

Solomon tells parents that they need to consider questions such as: Who will take care of the child? What services will the child need? Where will the child live? Where will the money to pay for the child’s needs come from?

She helps parents learn what guardianship is and urges them to start planning immediately for the lifelong financial needs related to providing for someone with a disability. Solomon also notes that it is important for parents to apply for disability services well ahead of time. Once a child graduates, he or she loses any benefits, such as ongoing speech therapy, that the child’s school provides, she points out. Solomon adds that in Texas, there is currently a 12-year waiting list for state services.

Young also helps families come to grips with the reality of planning for a child’s ongoing support once the parents are gone or are no longer able, for health or other reasons, to continue providing care. Although he acknowledges it is a difficult conversation to have, he sits down with families and helps them develop a long-term plan by investigating options such as sheltered workshops and group homes. Young also emphasizes the wisdom of financial planning with insurance agencies that specialize in estate planning and special needs trusts.

From Solomon’s perspective, this planning process also comes back to encouraging children with special needs to develop as much independence as possible and teaching them skills to help prepare them for the future, just as parents do with any child.

“Just like with another child [without special needs], you ask, ‘Have you done your homework? Practiced your instrument?’ With the child with special needs it’s, ‘Did you practice doing your buttons? Did you take a shower?’” she says. It’s still homework, she adds, but homework of a different sort.

Young says it is important for counselors to empathize with parents about the challenges of raising a child with special needs. At the same time, he encourages parents to let go of the idea of what “could have been” and instead embrace the child that they have because each child with special needs also has his or her own beautiful gifts.

Stuntzner, who is also a member of the American Rehabilitation Counseling Association, agrees. “Coping well does not mean the family has not felt or experienced negatives or difficulties,” she says. “Rather, it is an indication that through the experience of a loved one’s disability, they have found a way to work with the situation so that it brings the family together instead of pulling it apart.”

 

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Additional resources

The American Rehabilitation Counseling Association, a division of the American Counseling Association, is an organization of rehabilitation counseling practitioners, educators and students who are concerned with enhancing the development of people with disabilities throughout their life span and in promoting excellence in the rehabilitation counseling profession’s practice, research, consultation and professional development. To learn more, go to the ARCA website at arcaweb.org.

The International Association of Marriage and Family Counselors, also a division of ACA, is an organization whose members help develop healthy family systems through prevention, education and therapy. For more information, visit iamfconline.org.

Other resources include:

• “Disability Awareness,” an ACA podcast presented by Robbin Miller. To access the podcast, go to the Knowledge Center section of ACA’s website (counseling.org) and click on “Podcasts.”
• Yes You Can!: Art-Centered Therapy for People With Disabilities, an ACA DVD presented by Judith A. Rubin. To purchase the DVD, go to the ACA bookstore (counseling.org/publications/bookstore).
• “Autism Spectrum Disorder,” an ACA Practice Brief written by Carl J. Sheperis, Darrel Mohr and Rachael Ammons. To access this brief, go to the Knowledge Center section of ACA’s website (counseling.org), click on the “Center for Counseling Practice, Policy and Research” and then “Practice Briefs.”

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To contact the individuals interviewed for this article, email:

• Robert Jason Grant at dr_rjg@yahoo.com
• Laura Marshak at marshak@iup.edu
• Charmaine Solomon at charmaine@csolomonlpc.com
• Susan Stuntzner at wisconsinwn@yahoo.com
• Erik Young at erik@erikyoungcounseling.com

 

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Laurie Meyers is the senior writer for Counseling Today. Contact her at lmeyers@counseling.org.

Letters to the editor: ct@counseling.org