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Perspective-Taking: Understanding Challenges, Fears and Joys of Parents of Children with Special Needs

Perspective-Taking: Understanding Challenges, Fears and Joys of Parents of Children with Special Needs
Christy Jones-Hudson, MA, IMH-E®
June 14, 2021

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Editor’s note: This text-based course is an edited transcript of the webinar, Perspective-Taking: Understanding Challenges, Fears and Joys of Parents of Children with Special Needs, presented by Christy Jones-Hudson, MA, IMH-E®​.

Learning Outcomes

After this course, participants will be able to:

  • Explain how to use the Kübler-Ross Model to identify stages of grief parents may experience as a result of learning of a child’s diagnosis.
  • Analyze research and self-reports of common challenges, joys, and fears experienced by parents of children with special needs.
  • Describe adverse physical and psychological impacts on parents of children with special needs.

Introduction

Before I begin these conversations, I always put forth a couple of disclaimers. I always encourage administrators and individuals working at the local levels to be sure that you are working in a transparent environment. This means you want to make sure everyone feels comfortable and vulnerable to have these conversations at the local level. You should be working within safe spaces where everyone feels comfortable to talk about their own challenges and working with unique populations. It is no different when we talk about working with caregivers of children with special needs. Today's discussion will call for transparency.

We are going to reflect on our own experiences and those of others. Sometimes that reflection may be emotional or uncomfortable, but it is okay. You may feel different emotions when you began thinking about your work with caregivers of children with special needs, and again, that is okay. It will all be useful in terms of pivoting your service delivery for this wonderful population. This is a safe space.

Grieving a Diagnosis

The first point and the foundation of our conversation today is that parents may grieve a diagnosis. Throughout the conversation, we will talk about what common challenges, fears, and joys parents may experience. We do not want to generalize these behaviors to any parents because just like every child is different and unique and comes with their own set of individualized experiences, so are the parents that we work with. Not every parent will go through what we discuss today. But it is important to know that some parents will go through many of the things that we discuss today.

The first is that parents may grieve a diagnosis. This grieving period may happen immediately, right after learning of the child's diagnosis. It may be delayed. Let's say the parent learns about the diagnosis in September. The parent may not really feel grief or go through the grieving process until November, December, or January. The grieving process can be brief. No one says that you have to go through the grieving process for years. It can be a very short period for parents. Unfortunately, the grief at times can be continuous. Some parents never make it out of the grieving process. That is important to know as service providers.

Kübler-Ross Model

The model that many people are well-informed about is the Kübler-Ross model. That is what we will focus on today as we talk about grief. In the 1960s, Elisabeth Kübler Ross introduced this model that consists of five different stages of grief most commonly referred to as DABDA.

  • Denial & Isolation
  • Anger
  • Bargaining
  • Depression
  • Acceptance

Those components make up the Kübler-Ross model for grieving. It is important to realize that in the original context, this model was used for people who were suffering from a terminal illness. Once you learned of your fate, it was said that you would go through this cycle of grief. One, you might be angry, you might begin to bargain, you might be in denial about your diagnosis, and then you may come to accept the diagnosis.

Today, we understand that there are many applications in which the Kübler-Ross model is used. It is used when someone loses a loved one and someone passes away. It is also used for significant financial losses such as the loss of a job or income or large sums of money due to the stock market. People who go through divorces often grieve the loss of that relationship with someone they spent so much time with. That makes a lot of sense to grieve that sense of losing a companion. Again, back to the original context, individuals grieve when they receive a diagnosis of a chronic illness for themselves, another loved one, or their child.

Denial

Denial is a typical initial reaction for parents who learn of a child's diagnosis. You may see this show up in the classroom setting from a parent who may say things such as,

  • This is not true.
  • My child does not have autism.
  • I do not believe the diagnosis.
  • I do not believe the doctors.
  • This is not happening to my child.
  • This is not happening to us.
  • Not me, not my child.

Sometimes during this stage, parents may go above and beyond what you would consider to be reasonable for additional evaluations. For example, they might have gotten a couple more evaluations after receiving the diagnosis. When you see parents going to great lengths such as going to different states, different psychometrists, and evaluators to get a different diagnosis, then that may signal the parent is a bit in denial. Especially when the behavior being exhibited by the child indicates that yes, this may be a pretty accurate and reliable diagnosis.

It is also critical to realize that many parents began the denial phase long before their child received a diagnosis. In this case, the diagnosis may further intensify this stage. You may hear a lot of parents who when you attempt to provide your observational feedback to them may say statements such as well, he does not do this at home. He does not do that at home. This behavior does not happen for me, he's completely different at home. Sometimes it may be difficult to tell whether or not the parent is actually stating a true reflection of what happens within the home or whether the parent is denying what is going on with their child.

One of the associated feelings many parents may go through during denial is avoidance. A parent may avoid you or avoid listening to what the child is doing in the classroom. They may avoid parent conferences, phone calls, and quick chats because they simply are not in the space to hear what is going on with the child.

Another associated feeling with denial is elation. Some parents may be the complete opposite of the parent that is in denial. Some parents may be elated to find out that they now have a diagnosis and can go on with their lives. They can get the treatments and interventions that their child needs to be successful. A lot of parents do find joy in finally getting that diagnosis.

Some parents are confused. Depending on the educational level of the parent, they may not understand what this means for them and their child. You may be able to see that with the parent when you are trying to explain certain things about the diagnosis or if they are trying to explain to you things that therapists are saying. They may be completely confused because no one has taken the time to clearly and effectively describe to them what the diagnosis means and what they should be doing to increase the odds of success for their child. Lastly, another associated feeling with denial is fear. Once some parents receive a diagnosis, they are afraid and fearful because they do not know what it means or what the future holds for them.

Anger

The second stage we will look at is anger. In this stage, the parent is no longer in denial but now they are simply angry. As an early childhood provider, they might be angry at you. They might be angry with physicians or other health care workers who might also be trying to help the situation. They might be angry at friends. Although they are not angry at typically developing children, they may demonstrate anger toward those experiences held by typically developing children that they believe their child does not have an opportunity to experience.

Another source of anger may be their spouse or they may be angry at themselves for whatever reason. Again, this is something that parents who receive a diagnosis for their child go through. They are angry about why this happened to us and to my family.

For parents, this anger may be passive and masked as sarcasm toward other typical children and parents. Sometimes the anger is directed toward that child with a disability. That is unfortunate but it happens. It is important for us to realize that as well. The associated feelings with anger include frustration, anxiety, and irritation.

Bargaining

When you look at the stage of bargaining, you begin to realize that parents are now willing to do whatever it takes, if possible, to right what they may perceive to be a wrong with their child. Unfortunately, many parents that I have worked with consider a diagnosis to be something negative. We know that it is not. We know that children who receive a diagnosis are highly capable of many developmental expectations. It just takes consistency and putting in the work and accommodations within the classroom environment. Sometimes parents do not see that at this point and that is okay. They can only see things from their vantage point.

In this stage, you may see or hear parents speaking about praying to their higher power for their child to be like other children. For this, they may give up something. They may say that they will behave in certain ways if their child can be made, in their minds, whole again. They may ask for second chances if they can do all this over again. You may hear parents say things of that nature. I have before. I have had lots of parents come to me, joking, saying to fix my child. We know that fixing a child is not possible but we can implement great strategies and tactics within the classroom to help improve the child's success. Within the bargaining stage, parents may say things that lead toward this feeling which allows you to identify when they may be going through this stage.

Parents may become extremely vulnerable to scams and false promises in this stage. There are a lot of therapeutic interventions that are validated, evidence-informed, and evidence-based. A lot of times parents do not understand how many clinical trials and other things are involved before we can say that something has been proven to be effective for a child. Because of this, oftentimes the parents will be susceptible to spending large sums of money on oils and interventions that have not been evidence-based or studied in order to try to provide an avenue for children to work on skills.

Many times, this is a dangerous stage because parents can not only still go through the grieving process, but then they begin to lose large sums of money that they may need for the household income and things of that nature. This is a difficult stage to see a parent be in because you want to help them, but they do not see their child improving at this point and are willing to do anything.

One of the associated feelings for this stage is desperation. Parents are desperately trying to find ways to help their child, which is great. We would expect and hope that parents would be willing to go to great lengths to get treatments and provide materials and activities and things of that nature for their children. You may see parents presenting with covert or overt sadness. Some parents say things are fine, but you can tell otherwise from their nonverbal behavior. They might look sad or maybe their tone is sad.

Depression

Depression is a stage that is more commonly known or more familiar to people in terms of the Kubler-Ross model. Depressed parents may feel as if the child's behavior or life or current experiences will not get better. There is no hope at this point for the child. Nothing causes happiness for this parent. Unfortunately, you may see some detachment from their child after the diagnosis when a parent is experiencing depression.

One of the associated feelings with this stage is helplessness. They do not see their child getting any better. They do not see any outside service provider, classroom tactics, or strategies helping their child. At that point, the parent may be in a very low place. They may feel overwhelmed during this stage. They may feel like they have so much to keep straight and plan for, make appointments, and schedule for their child as well as work. They may begin to feel very overwhelmed and need some outside social supports. It is also very common for parents to feel hostile in this stage. That could also be combined with the anger that we previously spoke about.

Acceptance

The last stage is acceptance. In this stage, the parent may realize that there is a new normal to their life now. They have learned the diagnosis, they know what they need to do for their child, and everyone is on the same page. They have either an IEP or IFSP implemented and are good to go. They may be seeking out ways to make their life and their child’s life easier. They are also very interested in evidence-based and evidence-informed therapies now because they know the difference now. They may openly talk with you and others about their situation, their lifestyle, and caring for their child. I have seen many parents begin to advocate for services at the local level, state level, and even federal level for services for their child and other children. Some parents may joke about their lifestyles to others.

Associated feelings at this stage include a sense of peace and a positive outlook on life. Parents are open to new realities and that this is now their life. Now they know how to handle experiences and occurrences.

One thing to note about the Kübler-Ross stages for the model for grieving is that the stages may not be linear, meaning they can come and go. They do not have to be experienced in order. You are not going to see parents going like we did down the line and first experiencing denial, then anger, then bargaining. It may not look like that for many parents that you work with. Some parents may revisit a stage more than once.

You may feel like a parent has just gotten over the bargaining stage and now they are going through depression. Remember that many of the parents do not experience acceptance or all of the stages. Be cognizant that parents may not experience the stages in order and some of these stages may come and go.

Understanding

Before we jump into the next part of the presentation, I want to provide a little insight and background about myself. I am not a parent of a child with a disability. I am an individual who has worked with parents who have children with special needs for 14 years. I have spent a very long time building some very meaningful relationships with parents of children with disabilities. They have come into my office and talked to me about their own challenges, fears, and joys. They have allowed me to be very privy to their own lifestyle. From that information, and from focus groups that I have conducted on my own, I have been able to collect and compound a lot of information to pass on to individuals working in the early childhood education field. I always like to include that information as a disclosure to the folks who are listening to the research and information that I present.

So now what? We understand parents may grieve a child's diagnosis. This may not look the same across families. You may be able to actually identify the stage of grief depending on what the parent is going through. Here is a caveat. You are not going to have all the answers. If you are like me and you are a problem solver by nature, you may have a bit of a problem now. Because as problem solvers, we always want to provide a solution to what parents are going through. But when a parent is going through the grieving process, you cannot control that situation. You may not be able to provide solutions to what the parent is going through. We will talk a little bit about what you can do a little later.

Psychological and Physical Health

Here is some raw data on psychological and physical health from Caregiver Statistics on caregiveraction.org. Sixty-four percent of working parents caring for a special needs child believe that caregiving has negatively impacted their work performance. Twenty-two percent of caregivers say they need help communicating with physicians. That goes back to the confusion that parents may feel as a result of learning of a child's diagnosis. Sometimes the terminology physicians use is too technical for many of the parents that we work with. A lot of caregivers leave those meetings not knowing what they should be doing next and feeling like they need someone to help them communicate with those medical professionals.

Sixty-nine percent of families say they are very concerned about being able to provide lifetime care for their dependents with special needs. Families may think,

  • What happens after I am gone?
  • Who is going to care for my child with the special needs?
  • How will they financially care for themselves?
  • Who is going to help with their independent living skills and adaptive skills?

One of the things that continued to come up in the data was this concern. Many parents want to ensure that after they are gone, someone that is competent and capable will look after their child's well-being when they are adults.

The parents that I formed relationships with report anxiety when requesting time off or schedule modifications for therapy visits. One parent was terminated when she could not find a resolution for her daughter's newfound fear of the backseat. This parent used her personal vehicle to go to and from places just as anyone else would. But due to the child’s diagnosis, she became very fearful of using the vehicle and getting into the car. Not being able to use that vehicle to get to and from appointments, to get the child to school, and to go to work, caused that parent to lose her job.

Other added challenges are having siblings who may envy the attention that the child with special needs gets from their mom and dad and other caregivers in the home. You have added components of sibling jealousy and sibling rivalry because they do not understand the need for the additional care that the child with special needs must receive.

More than 59% of caregivers say there is too little information available about financial assistance. A survey found that 32% of parents spend more than 40 hours per week with their special needs child, or the time equivalent to having a second full-time job. Again, that indicates the time requirements that parents of children with special needs must provide to that child that, depending on their level of care and the severity of their needs.

Parents also mentioned spending an additional $326 per month, or just under $4,000 per year, on out-of-pocket medical expenses on their child with special needs. This shows that all of the numbers may go up and down depending on the cost of living where the parent resides. It still indicates that parents of a child with special needs may incur additional financial requirements or expenses due to caring for a child with a special need. That is an important takeaway here.

Impacts on Health and Well-Being

According to McConnell and Savage (2015), mothers of young children who are intellectually disabled (ID) are three times more likely to experience clinically significant levels of stress, anxiety, and depression. That chronic stress may result in an increased risk for marital disruption. Remember we talked about the grieving process and feeling angry at the spouse so that might be connected. The stress also led to low family cohesion and emotional withdrawal from the child and from other family members.

Caregivers of children with cerebral palsy reported more ulcers and migraine headaches, thought to be stress-related. They also report unexplained pain, such as an ache in their back or their neck or leg hurting. Then when they go to their physician, they are unable to identify the source of the pain. This is why it is considered to be unexplained pain. There is no clear cause or sign of where that pain is coming from. They also reported more chest discomfort and disrupted sleep. The disrupted sleep could be because many children with certain diagnoses do not sleep well during the night. This causes the caregiver to be up during the night as well.

I would be remiss to not mention this within the presentation. Children with disabilities are at an increased risk of being abused and/or neglected by caregivers. In fact, they are two to three times more likely to be abused. This can be due to several reasons but there are a few that we will focus on.

One reason could be the lack of social supports being received by parents, meaning the parent does not have enough social connections outside of the home to support them. This abuse could also be due to difficulty accepting the diagnosis. Remember, we talked about a parent being in denial if they do not want to accept the diagnosis. If they do not want to believe it is true, it is highly likely that when their child begins exhibiting behaviors which are indicative of their diagnosis, it may cause the parent to be frustrated which subsequently leads to abuse and neglect.

Abuse could also be due to thoughts from the parent that their child will not be accepted and is “different.” Another reason is stress from the financial and time limitations being imposed on that parent. It could also be due to the lack of parental education regarding developmental expectations for their child. A parent may be very frustrated when their child is not doing what the sibling did because they do not understand what is developmentally appropriate for that child with a disability. When parents do learn these things, it allows them to be more forgiving and understanding when their child has not reached certain milestones. Just a reminder that the perpetrator of child abuse and/or neglect is usually a parent or other caregiver within the family (Depanfilis & Dubowitz, 2005).

Words from Parents

So here are words from parents about their challenges, fears, and joys. I have quoted them below because I love to give voice to the words of parents. I do not want to skim over anything they have to say because I value everything they have to say and the time they take to provide feedback on their experiences.

Challenges

"What quality of life? I don’t have one. I really don’t… I have absolutely no social contact other than the support group that is still there at Kindy." (Mother of Sarah aged 5 years, Chambers & Chambers, 2015, p. 13)

"I don’t feel like I have a life or a lot of time. Everything I do revolves around him." (Mother of Carl aged 3 years; Chambers & Chambers, 2015, p. 13)

"I'd say [I’m] fairly stressed. There’s always something that's coming up and always appointments that Cooper has to go to… so yeah, it is pretty stressful." (Father of Cooper aged 9 years, Chambers & Chambers, 2015, p. 13)

"My biggest challenge was isolation. No one expects all their friends to disappear, but people are uncomfortable with disability, and ‘don’t know what to say or do’.”

"One expected challenge was the learning curve. Our diagnosis was ‘garden variety’ Down syndrome. I thought I knew what that was, but there was quite a bit to learn, and it could be overwhelming: no time to study up, a busy household – I can't imagine what it must be like for parents who can't even pronounce their child's diagnosis and don’t have any idea what it is." (Caregiver of a child diagnosed with Down syndrome; Jones-Hudson, 2019)

These last two statements reflect the sense of isolation that parents incur from simply receiving a diagnosis for their child. One thing that I will also mention is that a lot of parents experience what is called friend and family flight. This is a phenomenon where once you learn of a disability, you have friends and family around you one day, and then after you receive the diagnosis friends and family begin to flee. More research is needed on why that is. It is important as early childhood education providers to understand that because so many of our programs can imbed a parent education and support component to support these parents.

Fears

"[I fear] the unknown. Not knowing what to expect, not trusting myself enough to feel confident in the decisions made for him regarding therapies, etc." (Jones-Hudson, 2019)

“My fears are people not accepting him because of his differences. I fear someone trying to harm him in any way.” (Jones-Hudson, 2019)

“My fears started when I brought him home from the hospital. I didn’t have a clue how to help him.” (Jones-Hudson, 2019) 

 "My child being gawked at or misunderstood by teachers or peers. My child being labeled." (Jones-Hudson, 2019)

There is a common thread here in terms of the confidence that parents may feel they do not have about caring for a child with a disability or special needs. Other parents do not want their child labeled or looked at as being different from other children. Before we move on to joys, I would like to mention one of the biggest challenges that I personally hear and what the research continues to reveal in terms of the challenges.

Many caregivers reported that a huge fear for them was what happened in the classroom setting with their child. Will the provider be as warm and caring and compassionate as they are? Will the child be labeled as being a distraction to other children? Will the child receive accommodations? If the child was nonverbal, will they be mistreated? So many of the fears centered around the level of support and care that the child will receive in the early childhood environment. That is such an easy area for us to support parents. We can show them and demonstrate what we do to accommodate children and manage the classroom setting to ensure that child is successful.

Joys

"[My joys are] seeing him blossom and reaching milestones, enjoying his sweet demeanor and seeing how much love and influence his brothers gave to him and had on him." (Jones-Hudson, 2019)

"The diagnosis had a positive effect on my life. I’m more compassionate with my child and all children." Shane Nurnberg (“IRIS,” n.d.)

"My biggest joy is being his aunt. I love our together time listening to music and giving him his weekly haircut." (Jones-Hudson, 2019)

Parents found joy in getting to know themselves more. Think mama bear and papa bear. When the child received the diagnosis, unfortunately, parents reported stares in the supermarket and getting questions that were insensitive. Parents really began to live in their comfort level in terms of simply telling other individuals to please not say that about my child. Do not ask those questions, that is insensitive. I love my child. This is their diagnosis. This is what they are great at.

Other joys include the small achievements, such as correct eye gaze for a nonverbal child or if you are asking a question and asking the child to look at the correct object and they do so. That was a huge joy for parents. The occasional good days that happen and the small gains in developmental assessments were other joys parents reported.

Additional joys reported included bonding with other parents in similar situations and being reminded that humanity is imperfect. Parents enjoyed having conversations with service providers and therapists who understand the lingo, the language, and what happens. That brought a lot of joy to parents because they did not feel like they had to explain anything to anyone. They did not feel like they were looked at a certain way when they talked about having to get up and put braces on their child's feet. When they are in the room with service providers who understand, they enjoy that. Parents find joy in having a cup of coffee in complete silence. Parents reported driving up to pick their child up from school and seeing them on the playground playing with everyone else. Parents find great joy in that.

Themes Across Parents

Focus groups by Murphy, Christian, Caplin, and Young (2007) revealed five themes that expressed the essential nature of parents.

  1. Stress of caregiving
  2. Negative impact on caregiver health
  3. Sharing the “burden”/workload
  4. Worry about the future
  5. Caregiver coping strategies

One common theme across parents was the stress of caregiving. These parents reported very high levels of stress as we previously talked about. They also reported the negative impacts on their own health. They talked about wanting to share the burden and the workload. These are their words, the burden of the caregiving duties. At times, they did not trust others to pick up the duties and do as well as they could do. Parents are so used to doing it on their own that sometimes when they are given an opportunity for respite and relief, they do not take it. That adds to the stress as well because they do not want to take and accept that break.

Another common theme was worrying about the future. We talked about parents being concerned about what happens when they are gone and who is going to take care of their child. There is a need for parents who want to ensure processes and systems are in place to ensure their child is cared for. Parents were also very concerned about what they can do to cope with everything that is going on and learning how to cope.

What Can I Do?

Here is what you have been waiting for. We know all of this about the psychological and physical health symptoms and manifestations. We know about grief and how that may show up in our target population in the parents. So now what? One really effective, very small strategy that you can do is simply ask open-ended questions. How is that parent doing?

Have referrals been made to counseling or depression services? Have referrals been made to medical providers for the parents’ own needs? Is there an early intervention program in the school system to help increase the odds of success for that child?

Have you modified lesson plans to ensure that the child is able to participate in your programming? That is a huge one. It is important to modify our lesson plans to reflect on paper how we are accommodating every single child in our classroom and show that we have an inclusive classroom environment. How are you doing that?

When parents talk to you about their experiences, are you uncomfortable? Do you clam up or change the subject hurriedly? Did you research the child's diagnosis to see how you could help? These are ways that we can be more proactive in serving and helping these families.

Faux Pas

Here is a common Faux Pas I have been privy to. A parent tells you of a child's diagnosis and your statement that follows is, I am so sorry to hear that. Unfortunately, this is a go-to statement for many. Do not be the person that says this, please. Saying I am sorry to someone after hearing about a child's diagnosis signals a lot of negative things.

When you say I am sorry after hearing about the child's diagnosis it signals that the child is a failure. When I think back to things that I have apologized for they are normally things where I have goofed, made an error or mistake, and need to apologize. When you apologize for the child's diagnosis, you are assuming the parent should now be disappointed and upset. It is an awkward statement to say because there are so many other statements to say, and we will talk about some of those statements. You are implying pity or judgment by saying I am sorry. Oh, I am so sorry, he has Down syndrome. I am sorry that he has Williams Syndrome. I am so sorry she has hydrocephalus. There are more productive and meaningful things that we can say aside from I am sorry. It implies that the child’s state is not desirable and many other negative connotations.

Active Listening

Active listening is something that you can do right now that is really effective. You can practice this the next time you are talking with a parent, no matter the subject. You may be wondering what active listening looks like. Here are some things to remember when using active listening.

  1. Approach the discussion with a goal to learn something
  2. Focus closely on the speaker
  3. Stop talking
  4. Listen for specific details
  5. Ask open-ended questions (But don’t interrupt!)
  6. Listen to obtain a total meaning of the dialogue (Much can be said without speaking a word.)
  7. Pay close attention to how you respond

When you are actively listening, approach the discussion with a goal to learn something. For example, you are going to talk to Mrs. Williams. You know that you want to learn about XYZ. But when you are doing that, you need to make sure that you are focusing closely on the speaker. Do not think about your grocery list and what is on sale at Target. Now it is time to focus closely on that speaker.

Stop talking. Just stop talking for a second and do not interrupt. Simply listen to what that parent is saying and absorb what they are saying. Listen for specific details. Ask open-ended questions. Remember, do not interrupt even though you might feel tempted to. Right now, you are just listening. You want to obtain a total meaning of the dialogue. A lot can be said without speaking a word. Also, pay close attention to how you respond.

Why is it important to use active listening? Parents love when you ask them about their child and when you listen to them when they are talking about their child and their own experiences. Parents might feel alone after diagnosis. Talking and asking them how they are can bring them comfort. It can help you get the information you need for planning purposes, assessments, et cetera.

You can use that information to create goals for the family and provide linkages to community resources. For example, if a parent tells you about needing something for their child or experiencing the family and friends flight, you can refer them to community support groups, community assistance, or whatever the parent may be needing. You can also actively listen to better understand the family routines, structure, and strengths.

Other reasons to actively listen are to build rapport with that person and demonstrate respect. Active listening allows for paraphrasing what the parent is saying and providing verbal affirmations which shows that you understand and are listening. Some examples include, it sounds like what you are saying is…, what I hear you saying is…, I understand, or okay, I’ve got it. One parent said, “When people listen to me, it makes me feel like they care.” Of course, we do. That is why we take the time to ask questions and then actively listen.

Instead of Saying “Sorry”

We talked earlier about not saying, “I’m sorry.” Instead of saying sorry, try these reflective questions or statements instead.

  • How are you feeling about the diagnosis?
  • What progress have you seen since the diagnosis? (If the diagnosis occurred over 6-12 months ago.)
  • How are you taking care of yourself since learning about his diagnosis?
  • What are you most concerned about right now?

If a parent says their child was just diagnosed with Williams Syndrome, instead of saying I am sorry, you can say, "So how are you feeling about that?" That is a very reflective, compassionate response. It is not a yes or no answer. The parent can give you a lot of information when answering that one compassionate question.

When asking the parents what they are most concerned about you can find out how you can help support them. It takes only a second to provide resources, whether you put them in the cubby or send them via email. Providing resources helps support the family to increase their quality of life. Another thing you can do is simply say, “I am here to support you. I am here when you need me. The center/program is here and I am here.”

Summary and Wrap Up

Let me give you a little bit of background about myself. Fourteen years ago, I walked into a classroom completely new to the field. I was thrust into a classroom environment with children with special needs and children who were typically developing. I had absolutely no previous background or experience working with this population. I was a bit like the parents in learning of some of these diagnoses. I did not have a whole lot of confidence. I was nervous and I was scared. But administrators trusted me to work with this special population. I took the time to learn about each of the child's diagnoses. I used that information along with the research I had done on support groups and community resources as an arsenal to support parents in the program. There were many times where I goofed. In fact, I almost said I am sorry to a parent when they told me of a child's diagnosis.

The point of the discussion today is that we are human and we are imperfect. You may be the person that says, I am so sorry, regarding a child's diagnosis. It happens. The end goal here is to continue working toward progress and improvement. It is not perfection. We will not always get the response right every time. We may be absolutely blindsided by something a parent says to us. But understanding how the Kubler-Ross model can show up in the parents that you work with is a really valuable tool in terms of supporting those parents.

As early childhood education personnel and providers, our main goal is to partner with parents to increase successful outcomes for their child. Doing that means doing a bit of perspective-taking. When we take and consider the perspective of someone else, we are trying to understand what they are going through. We need to understand their challenges, joys, and fears. We need to be able to pivot our own service delivery going forward. With that being said, again, you may be occasionally blindsided by something a parent says. Regroup, use active listening, and use reflective, compassionate questioning. Use that information and create a successful individualized plan to support that parent and also support their child.

Questions and Answers

Thinking about things from the educators’ perspective, what else can we do to help parents who might be struggling with a new diagnosis or a child with special needs?

First, talk with program administrators and let them know about the concerns you might have with the parent. If you want to have a discussion about the diagnosis with parents and have a concern about how to move forward, make sure to bring your supervisor into the process or conversation.

Then I would suggest having a private conversation with the parent and ask questions. A great starter question is the one that we just talked about. Ask the parent the blanket questions of how are you taking everything? How are you doing now? I think that is a really reflective question in terms of getting a lot of information. When you are doing that, you are trying to pick up on all the cues that the parent is demonstrating both verbally and nonverbally. They may be saying one thing, but how is their body language? What are they are really saying their challenges are? Are they asking you for something?

Beginning the conversation will help to build rapport with the parents. A lot of times I have seen that the educators in our programs feel uncomfortable having these conversations with parents or feel that the parent is standoffish. But many times, in my experience and in the experiences of the sites that I have worked with, that is not really the case. We have to remember that these parents are very guarded about their child with a disability. It goes back to the parent already feeling stressed and already feeling hesitant to enroll their child into an early childhood education program. This is especially true for children who are nonverbal because parents want to ensure that the child is being cared for properly.

The biggest step toward building a positive, meaningful relationship with the parent is starting the conversation. I think that starts with asking simple questions. How are you taking the diagnosis? What can we do to help? Because from that, you will glean a lot of information that gives you the next steps. What do you need to do next? Do you need to schedule more time to bring more therapists into the classroom? Do you need to provide more programming or modifications within the classroom? What are the parents’ primary concerns?

What are some caregiver coping strategies that teachers can share with parents?

The biggest tool that I refer parents to is parent education and support programs. These are found within most communities, are often funded by state-level entities, and are intended to support parents during very challenging times. This includes receiving a diagnosis for a child with a disability. The first thing I would suggest for the parent is to form a circle of support. We already talked about friend and family flight, meaning friends and family may leave and not be there to act as a source of support for parents during this very critical time. They do need to increase their social connections with others in the community though.

This could be going to a parent support group. In our local area, we have autism support groups, Down syndrome support groups, and support groups for other families. Finding that local source of support is very important because they can find like-minded peers they can have conversations with. They can begin to remove that sense of isolation. We also talked about isolation being one of the primary factors and why many children with special needs are being abused and/or neglected at three times a higher rate than a child who is typically developing. Many times, that is because of the isolation that parent is often putting themselves in. They are not reaching out to community connections. I would encourage caregivers to know that they are not alone and know that there are social supports there to help them. Encourage them to be active in these groups. A lot of information can be received from a simple parent support group that covers many different topics throughout the course of a program year.

Another strategy that I would suggest for parents is understanding that this is a temporary situation in terms of where the child is now. Yes, the child may have a diagnosis but it does not mean that the child cannot grow. It does not mean they cannot broaden their skills and increase their cognitive abilities. The child is able to do that. There are many strategies that can be put in place.

I would encourage parents to be consistent but understand that small gains are also important. Do not get drawn into the hype that everything has to be large grandiose gains in order for them to be meaningful. Even very small gains are important. Then when you look back over the span of a year, you will notice that these very small gains have resulted in huge developmental gains for that child. Please do not get caught up in the thinking that the child needs to be progressing at these leaps and bounds. Be very appreciative of the small gains overall.

References

Bujnowska, A., Rodríguez, C., García, T., Areces, D., & Marsh, N. (2019). Parenting and future anxiety: The impact of having a child with developmental disabilities. International Journal of Environmental Research and Public Health, 16(4), 668. doi: 10.3390/ijerph16040668

Caregiver Statistics. (2016, November 4). Retrieved from https://caregiveraction.org/resources/caregiver-statistics#Impact on Family Caregiver's Health.

Chambers, H.G., & Chambers, J.A. (2015). Effects of caregiving on the families of children and adults with disabilities. Physical Medicine and Rehabilitation Clinics of North America, 26(1), 1-19. https://doi.org/10.1016/j.pmr.2014.09.004.

Depanfilis, D., & Dubowitz, H. (2005). Family connections: A program for preventing child neglect. Child Maltreatment, 10(2), 108–123. doi: 10.1177/1077559505275252

Maltreatment of Children with Disabilities - Fact Sheet. (n.d.). Retrieved from https://preventchildabuse.org/resource/maltreatment-of-children-with-disabilities-2/

McConnell, D., & Savage, A. (2015). Stress and resilience among families caring for children with intellectual disability: Expanding the research agenda. Curr Dev Disord Rep 2, 100–109 (2015). https://doi.org/10.1007/s40474-015-0040-z

Murphy, N.A., Christian, B., Caplin, D.A., & Young, P.C. (2007). The health of caregivers for children with disabilities: caregiver perspectives. Child Care Health Dev., 33(2),180-7. doi: 10.1111/j.1365-2214.2006.00644.x. PMID: 17291322.

Nurnberg, S. (n.d.). IRIS: Transcript. Retrieved from https://iris.peabody.vanderbilt.edu/module/fam/cresource/q1/p02/fam_02_trans_nurnberga/#content

Statistics: Special Needs Planning. (n.d.). Retrieved from https://specialneedsplanning.net/statistics/.

Weafer, J. (2010). Independent and community living - the views of people with disabilities families and frontline staff: Focus group consultation report. Retrieved from http://nda.ie/Publications/Social-Community/Independent-and-Community-Living-Focus-Group-Consultation-Report/Chapter-Five-The-views-and-experiences-of-parents-of-children-with-disabilities/

 

Citation

Jones-Hudson, C. (2020). Perspective-taking: Understanding challenges, fears and joys of parents of children with special needs. Continued.com - Early Childhood Education, Article 23724. Available at www.continued.com/early-childhood-education

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christy jones hudson

Christy Jones-Hudson, MA, IMH-E®

Christy Jones-Hudson, director of children and family services for Goodwill Easterseals of the Gulf Coast, provides monitoring and oversight to early childhood education programs. She is the owner of a small consulting company, Multicoachural Consulting, LLC which provides training and technical services to programs with a focus on serving children with special needs. Her writing has been published in national platforms such as Exchange Magazine and Motherly. She is the creator of the Game Faces Preschool Membership for High Performers opening September 2020.



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