Written by Jami Kirkbride. Jami is a counselor, author, parenting coach, and her favorite role — is a mom of seven blessings. Powered by creamy coffee, quiet times, and quick naps, she helps parents struggling through stresses of highly emotional or highly sensitive children discover calm by understanding personalities, sensory needs, and mental health issues.
Parents often struggle with how to help their child when diagnosed with Disruptive Mood
Dysregulation Disorder (DMDD), but they also feel the tremendous burden to help his/her siblings cope with the constant upheaval in the home due to the emotional dysregulation. This article provides practical advice for helping siblings navigate the challenge and trauma of living with a sibling who has DMDD, so they can thrive and not just survive.
Fresh on the heels of a DMDD diagnosis and the weight of figuring out what your newly diagnosed child needs, an equally great burden surfaces. You realize the huge concern of helping your other children through the challenges of growing up in a home with an emotionally dysregulated, raging, unpredictable, highly sensitive, or out of control sibling.
If you are living this, you are painfully aware of the stress, toll, and trauma this brings to a child’s life and to the entire family. You may feel helpless as how to help, guilty for prioritizing your diagnosed child’s needs first, unsure of methods to protect them, and/or overwhelmed, realizing you do not know where to even start in giving this child some peace or security in their environment. You might even fear that this environment will ruin them or question how or if they can survive the experience. Then you realize that to protect and meet the needs of your DMDD child’s sibling(s) while living in the chaos would feel overwhelming to any parent.
Before I give you some specific tools to help you move siblings from barely surviving to fully thriving, it might help to understand what they may be feeling. Some of what I share comes from professional experience, yet the greatest lessons have come from experiences in our own family, with our own child, and his siblings. Please know, you are not alone in this journey. I truly get it. Now, let’s dive in.
DMDD-- A Family Issue
Let’s acknowledge it, DMDD affects the whole family, not just your diagnosed child. Siblings are greatly affected yet often overlooked. Through legislation and programs, society appears to be becoming more accommodating and sensitive to families of individuals with disabilities. There are more services, education, and support than in the past (though still lacking in many ways). But Dr. Avidan Milevsky says it accurately,
“There is one member of the overall family system who has been neglected as part of the effort to attend to disability issues: namely, the sibling of those with disabilities…Sibling issues, in general, is an area that has been neglected in research, application, and the law despite the fact that siblings play an integral role in the lives of people throughout life.”
If you’ve lived this in your home, you know all too well, how it unfolds. Your child with DMDD begins to act agitated, the whole family sees it, feels it, hears it, and knows it. And at this point, you are already aware that his sibling has picked up on it. Everyone knows what has the potential to erupt, but no predictability if for sure it will, or the degree to which it will. Your attention at this point, and understandably, shifts to the child in greatest need. How can you calm him, help him, reduce the response (noise, sights, sounds, emotions, or eruption), and limit the damage and destruction?
The Sibling Experience During Emotional Dysregulation
The sibling may attempt a number of coping mechanisms to try and diffuse the uncomfortable or scary situation. They may become sullen or withdrawn, begin acting out, try to engage the child or parent to interrupt the process they see unfolding, get more verbal and emotional, start crying, and even try to distract with humor or other loud behavior. Generally, these attempts are unsuccessful, and the emotionally dysregulated child escalates out of control.
Unfortunately, from the very point of agitation, and before things even get bad, a sibling has already fallen off the radar. They may be feeling many of the same things you are -- fear, sadness, overwhelm, uncertainty, anger, confusion, shame, and embarrassment. They, however, are working with an immature brain, less able to problem solve, understand, and navigate the unpredictable journey. And they may feel very alone. No parent intends to leave their child feeling this way. Only out of necessity do we step aside to handle issues of safety and greatest needs, but we can also provide tools to help our child (children). When done effectively through intention and purposeful conversation you can help your child plan, prepare, process, and power through these times that feel so out of control.
The Overarching Sibling Experience
The greater experience of life with a sibling who has a mental health issue has its own impact on kids, apart from the emotionally charged situations. Siblings may feel unsure about what the diagnosis means and left in the dark about how it will affect the diagnosed child. Attempts to shield them from the doctors visits or discussions about the issue can make them feel as though they are not included. Likewise, the amount of time parents must take to address the medical treatments, counseling, medications, and management of a child with disabilities can leave a sibling feeling a bit neglected or unimportant. And often what a parent has left to give can feel like left-overs to the child.
In addition, a sibling can bear great responsibility to keep things together, be responsible, and not further stress their parents.
It becomes easy to understand why research indicates that siblings of those with disabilities can actually be at increased risk to develop emotional issues, anxiety, depression, and stress. Children can easily direct these feelings inward and appear as though all is well, when the feelings are bearing a greater toll on them than one might expect. It might be their attempt to normalize a situation or try to hide problems from others.
How to Minimize the Impact of DMDD Diagnosis on Siblings
This may leave you feeling a bit hopeless or overwhelmed, but that is not the intention. Instead, I want to normalize some of the feeling you may be having and help you see that with some purposeful and intentional intervention, you can help both of your children. While you may feel that you are spread thin and question if you can handle the burden, I assure you…you can do this.
I want to give you six things your child needs to successfully navigate life with a sibling who has DMDD. You will be key in providing and fostering these things for them.
Calm
The most essential thing your child needs is calm. And yes, it seems like a lot to ask when it feels like things are falling apart around you. I get that. But it will be key to both of your children (the dysregulated child and the sibling) that you manage you own emotions and keep yourself as calm as you are able. It is impossible to help a child regulate their emotions when you have not regulated your own. We refer to this as co- regulation. So, model for your child how to stay calm. It may mean talking yourself through it or taking deep breaths. It may be reframing the situation. Or it might be removing yourself from the room for a brief time.
You may be thinking, easier said than done! I understand. It’s important to take whatever measures you need to improve your own ability to stay calm. Some parents find support groups, parent coaching, counseling, medication, or self-care as effective measures in improving their own ability to handle these highly charged emotional situations. Seeking help does not mean you are weak. It can be a sign of strength and willingness to do all you can to help your children and yourself.
Compassion
A child who is growing up around this kind of stress and emotional upheaval can feel like they are constantly on guard. They begin to dread what may unfold and live with the idea that even when things are currently calm, that could quickly change. They have seen things erupt rapidly, drastically, and with no warning. Others are likely, not talking about incidents like the ones they experience, and so they have no idea that there might be others going through anything similar. These children can suffer in silence, wishing that someone just understood what it feels like to be in their shoes.
Your child needs you to take time to acknowledge, express, and affirm that you understand the stress of this in their life. Let them know that you see them, and you understand that so much of this feels unfair, unkind, and sometimes unbearable. Let them know that you sometimes struggle with the feelings it brings up, but that you are always there for them and can talk about it anytime. Many parents think if they avoid labeling these feelings or situations that feel so unfair, that the child just won’t notice. It’s not true, this child is already very aware. Your ability to understand them is using empathy to validate their struggle. And that is what makes compassion and care different. Compassion is care motivate by empathy. Don’t be afraid to put yourself in your child’s shoes and address those things that they deal with in an honest way.
Communication
Talking about the emotions your child feels and acknowledging how they are affected in these situations is one part of this process. You are communicating with empathy to show them that you understand. But the communication cannot stop there. It will be vital for your child to feel that the door to discuss things is always open. They need the freedom to communicate the hard things and not fear making you upset. Building this kind of trust in your communication is valuable.
I can tell you this, that even when you feel like you have communicated enough, they may need even more. Check in with them. Process situations afterwards. Take time to walk through what happened and what can be done differently next time. Listen to their feelings and don’t get caught up in fixing things. Remember, listen to understand and address what they feel are the genuine issues or problems. It might be different than you think.
After an emotionally dysregulated incident with our son one morning, I went to school and took two of his siblings out of class to talk about it. We sat at a picnic table outside the school and just talked, hugged, cried a few tears, and then went back to our day. I checked in that night and things seemed to be okay. I thought that was ample discussion. I thought things were processed and understood. Only four months later did it surface that our youngest was very upset with something from that morning. I had stated in another room that if we couldn’t calm things down with our child, we might need to call the police to help us.
His knowledge of police involvement was limited, so he thought they would come to arrest someone. I had no idea he carried that fear from that morning. Only through careful communication (much later than if I’d checked in randomly about this topic) did I come to find out that every time his brother became dysregulated, he feared that someone would get arrested. That’s a big fear for a small child. Once I knew this, I was able to explain that calling the police to help us did not mean “arrest someone.” Instead, it meant for the officers to assist us with calming down his brother or getting him to a doctor or hospital so he can be helped. I further explained that if the police were to ever come to our home, that we would explain to the officers his brothers special needs and that we all need careful care and help. This conversation needed to take place much sooner, and I had no idea. Remember to communicate, communicate, and then follow up and communicate. Keep those doors open and check in often. I learned this the hard way.
Consistency
So much of this child’s life will feel unpredictable. And as he has experienced, even those things that are planned and routine can change at the last moment. So, bring to their life a resemblance of what they can expect and try hard to be consistent with that. One of the best ways you can do this is to have an approach that you usually follow both in times of need, like when the emotionally dysregulated child begins getting agitated, as well as in daily routines. When your child grows to trust how you will respond, it helps them relax a bit and know what to expect from you.
One of the best ways you can do this is to know what your parenting approach looks like. How do you handle the agitation stage? What do you say, do, or avoid when the dysregulation begins? What methods do you use to calm your child or other children? How do you address the siblings’ needs even in the heat of the moment? What do you do in public when things arise? How do you handle difficult mealtimes? What tools are helpful for your child to use? These are all important things to consider. I have found it helpful to walk through a process I’ve termed the Calm Care Plan. It allowed us to sit at a calm time and figure out what both the emotionally dysregulated child and the siblings might need. The plan included what helped them to feel calm, where they would go, and even who they could call if they needed someone to talk to while you are busy with the dysregulated child. It also develops the plan for how the family comes back together to reconnect after an incident. This is vital too.
Control
This plan your family develops will be useful for many reasons. It allows you to plan, prepare, and process the needs of each child and brings to the situation a sense of control. Everyone in the family constantly flexes to the needs of the child who has emotional dysregulation or mental health issues and what they can reasonably handle. While so much feels out of their control, it is important for you as a parent to give your child appropriate control in those areas that you can. It will help empower this child, and aid in them feeling heard and understood. It will also teach them the skills to speak up about their needs and feelings.
You might find that your child with DMDD or his sibling(s) may talk more freely without the other present. Because of this, you might choose to do an initial one-on-one discussion as you work to figure out your plan. One key thing that I encourage you to include in your plan is a code word that you or the child can speak when they need to leave the situation and just get to a quiet place while you work with the emotionally dysregulated child. You can say the “code word” that tells them to go somewhere quiet until you come and get them, or they can initiate using the word to tell you that is what they are doing to get some space and quiet. Even this small plan will give your child a sense of calm control when things begin to feel like they are spiraling. And remember, empowering them is a very essential step in the process.
Connection
The last thing your child needs is connection. They need to know that no matter what, you are there for them. They need to know that you can handle hearing their difficult struggles and emotions. They need to know that they don’t have to have mountain size problems to make your radar. They need to know that they can consistently count on your presence, your interaction, and your compassion. One of the best things we recommend in counseling is to devote 10-15 minutes daily for one-on-one time with your child. Building in this time to connect and interact will encourage those discussions, the checking in, and the building trust and rapport to get through tough things.
They may also really benefit from connecting with others who are experiencing something similar. I off-handedly mentioned that I’d love to connect one of our little guys with someone who had a sibling with similar issues as his. He stopped dead in his tracks, and in all seriousness said, “Wait, you mean other people are going through this too!” It broke my heart to think how much harder his journey likely felt to think we were just broken, alone, or struggling through something so foreign. I took the opportunity to scroll through the support group, listing family after family of those who are experiencing the same. It was an eye-opening moment for him and me.
Making sure your child feels connected to a support system is key. You may choose to utilize friends, extended family, community, church, counseling, or even a combination of these. Your child will benefit from having others who also instill feelings of hope, trust, and love in their lives. They can draw on the strength of those around them who are like minded through beliefs, faith, positive thoughts, prayer, or healthy problem solving. Connection can help your child find hope beyond this situation and change the game for them in ways you may have never imagined.
Transformation From Surviving To Thriving
Building connection with your child is invaluable. They grow a trust and respect for you, as well as a confidence in your relationship with them. They begin to trust that you can handle the situation, their sibling, and them. This confidence you reflect to them will be one they draw on for their own strength and resilience. Along with connection it will power them through the difficult challenges they face and serve as a reminder that they can do hard things. They, as well as you, will begin to see and believe that they are not only surviving but thriving. You will begin to see the character that is being built through the tough stuff, and you can remind and assure them that through these difficult situations they face, they are developing skills, strength, resilience, and character that will be a gift to them throughout their life. Help nurture this process and watch them grow and thrive.