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The Forgotten Sibling(s) of a Child with Special Needs: How Parents Can Show They Remember

Parenting a child with special needs presents unique rewards and challenges. I once heard a mom compare her experience to “Mr. Toad’s Wild Ride.” With all the twists and turns on the journey, it can be hard to focus on passengers in the back seat: the child’s sibling(s). Sometimes all you catch is a quick glimpse from the rear-view mirror, before your attention is called ahead to the next major bump in the road.

Before I address this topic any further, it is important to acknowledge that most parents of kids with special needs feel exhausted, guilty, and at times, overwhelmed. This article is not meant to induce more of those feelings. After a long day struggling with the needs of one child, the last thing you need is to be wracked with guilt about how it affected their sibling(s). This is hard to avoid, because quite frankly, many days your child with special needs will get more of your time and energy than your other kids. It’s the cold, hard truth; you can’t change this, and your other child likely knows it. The sooner you accept and acknowledge this, the sooner you’re on your way to giving your “backseat kid” what they may need most on those hard days: a listening ear and true understanding.

As a child therapist, I have spent many hours counseling parents that children, like everyone else, most want to be truly seen, heard and understood. In most cases, parents can do a “good enough” job giving this to their children. Hopefully, it is a relief to know that you don’t need to fix all your child’s problems or eliminate their struggles. You don’t need to have all the answers! But you do need to listen to them when it counts – to hear in a way that communicates: “I see you, and all your feelings are okay.”

For children who have a sibling with special needs, parents might be unaware of just how much is going on below the surface, both positive and negative. I recently spoke with a teenage girl who said this about how her brother’s autism affects her:

  • “I feel rejected by my family because often my turn never comes.”

  • “My sibling’s problems are more important than mine. No matter what I’m feeling some days, it feels like it doesn’t matter in the family.”

  • “My brother gets more attention for his interests because he talks about them so much. He doesn’t understand how I have interests that are important too.”

  • “I get to feel accepted because autistic people tend to be more accepting of others.”

  • “I get to watch him overcome his challenges and grow.”

  • “Sometimes people generalize autism as one thing, but it is a spectrum. They don’t get it, and that’s frustrating. Autistic people can be really different from each other.”

  • “I learn a lot because my brother knows a lot, and his mind goes so fast.”

  • “People can be mean and say rude things. They don’t really understand what people go through because they don’t live with it. It hurts and makes me mad. It’s hard because some things they say are true.”

  • “Sometimes it feels like he’s my mom’s favorite. It’s feels so unfair because she treats him differently. He gets more attention for his accomplishments.”

Before you ask your child what it’s like for them, prepare yourself for an honest answer that may be difficult to hear. It can help to take a deep breath; remember that your child’s struggles, no matter how difficult, can be opportunities for growth and learning. Having done this, it’s okay to ask directly about your child’s experience. You could phrase the question like this: “What’s it like for you? You know, living with your sister’s __________ (insert the name of the sibling’s disability)?” Then try to really listen and not talk much yourself. While you may be tempted to respond by saying something like, “I’m sorry … I just do the best I can,” resist. Just focus on hearing and reflecting what your child is saying; if they laugh, laugh with them, if they cry, cry with them, and above all, hear them. You can do this because in your own way, you get it; although you’re in different seats, you’re on this wild ride together.

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Why Communication Has a Lot to Do with a Blender

What does a blender have to do with communication you ask? Well, pull a chair up to the dining table, and I will tell you:

First, I want you to consider a scenario where someone prepared you a nice meal that you enjoyed. Envision that plate of food. What made it so enjoyable or delicious to you? How did it smell and taste? Were those sensations distinct from one another? How was it organized on the plate? Did your friend take your taste into consideration when making the dish? How much time went into preparing it?

Now, I want you to envision something entirely different. Imagine rather, that person took those same ingredients, piled them into a blender, sent them for a whirl, and poured you a nice thick glass full. As you take a big swig, can you distinguish clearly between all the ingredients? Does it slide down the throat nicely, or are your reflexes pushing it out? Are you feeling nauseous just thinking about it? What’s wrong? It’s the same ingredients, same food. Why not eat it this way?

It doesn’t take a world class chef to tell you why that wouldn’t be the same and why this concoction definitely would not be appetizing. Now, consider how communication is the exact same way as this meal. If we really want someone to digest what we are saying, we need to thoughtfully take our time, take their tastes into consideration, and plate it nicely for them. If we want someone to take in what we are feeding them, it needs to be palatable to them. Sometimes in communication, we take the haphazard route of throwing it all in the blender and serving a cup full of sludge. Then, without any consideration for the other, we can’t understand why they didn’t take in our cup of sludge.

So, does this mean for effective communication we should just serve up cake every meal? No! We all know that would lead to a sick or even dying body (or relationship). Like it or not, sometimes we need to eat things that aren’t our favorite in order to be healthy. Are you willing to take the time to find the preparation of that ingredient that tastes the most palatable for your partner, child, etc.? Some people like broccoli cooked and some like it raw. Some like it covered in butter with salt and pepper.

In my experience as a therapist, I’ve watched countless hours of couples serving one another “meals.” As they progress in the therapy process, they learn to put the blender away and begins plating beautiful meals for one another, after which no one has a problem listening or digesting.

For help putting your blenders away and plating some really nice dishes, consider making an appointment today.

Kathleen Baxter MS, LMFT

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Get Over It!

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“The reality is that you will grieve forever. You will not “get over” the loss of a loved one; you will learn to live with it. You will heal and you will rebuild yourself around the loss you have suffered. You will be whole again, but you will never be the same. Nor should you be the same. Nor would you want to!” – Elizabeth Kubler Ross and David Kessler from “On Grief and Grieving”

We live in a society that is uncomfortable with death and grieving; we just want people to “get over it” and be done. It makes us feel better if they are back to “normal” and are “okay”, then we can return to our lives without guilt. However, grief is complicated, messy, and full of emotions that we don’t want to acknowledge, let alone feel. So, what happens when we lose, or someone that we are close to, loses a person in their life? A spouse, child, parent, or friend. How can we help them, or ourselves, with this messy grief business? Honestly, the answer is so simple yet so complicated at the same time; grief is as unique and individual for each person as their fingerprint. There is no “right” way to do it. As a widow myself, there are a few things that I found, and continue to find, as being helpful and healing in my grief journey.

Be There

Grieving is a lonely, isolating business. Sure, there is the initial influx of mourners that surround the family in the days and weeks immediately following the loss, but what about after that? Can you be that person that shows up, texts, or calls just to chat, go for a walk, or grab a cup of coffee and give the grief stricken a sense of normalcy while chaos reigns elsewhere in their life? It’s often said, “Let me know what I can do to help.” Often however, in the midst of grief people aren’t even aware of what they need, nor do they want to impose on family or friends and ask for help, but they crave human interaction and connection. It doesn’t have to be a big thing, but just knowing that someone is there and cares can make all the difference during those really difficult moments.

Listening to the Tale

Just as each person has their own grief journey they each have their own tale of grief, how they came to the painful spot where they dwell. While those on the periphery may have witnessed and been part of that journey, it may be surprising how the mourner interprets their experience. For some, telling the tale is cathartic and allows them to release what they’ve held within themselves: guilt, shame, anger, fear, relief. While for others it gives them space to voice the confusion of trying to process a surreal experience.

My experience with losing my husband landed me squarely in the “trying to process the surreal experience” camp. Trying to wrap my head around him being here one minute and gone the next was really difficult for me to wrap my head around. My friends and family were all present in witnessing, but I needed to express what it was like for me. I felt almost desperate, at times, to have someone understand and validate me. I didn’t need anyone to “fix” it for me, they couldn’t, but to have them say, “Yep, that sucked!”, meant the world to me.

The “Right” Way Doesn’t Exist

As a society we have constructed this movie image of what grief should look like, the bereaved go into a deep mourning for a while, but then they pull themselves together, “move on” with their lives, and the grief is finished. In reality, grief presents itself in a multitude of variations. For some there is the anticipatory grief that accompanies a long illness. For others there is the acute, shocking grief from a sudden death. Yet still for others there is the guilt-ridden survivors’ grief that can accompany trauma and suicide. With such differences in experiences how can we really expect for people to process grief in the same way? Within the same timeline? And with the same reactions? We can’t; it’s a preposterous assertion.

Need help or know someone that needs help processing the grief related to losing a loved one? Wasatch Family Therapy has a team of therapists that can help you wade through the sea of emotions that accompany the grief journey, we would be honored to stand witness to your tale and help you find the “new” you that evolves from the death experience.

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Have a Conversation

Have you ever had a conversation where you just needed to vent? You just needed to get out all the pent-up frustration, anger, disappointment (whatever emotion that you were feeling at the time out), and the person that you were talking to immediately started telling you how to “fix” the problem? How were you feeling in that moment? Heard? Validated? Or the opposite?

Recently, my 17-year-old came in grumbling and lamenting about the struggles of high school existence. I listened for a bit, commiserated on how terrible small-town living is (sarcasm), and offered really “helpful” suggestions. Cue the eye-roll! Yep, I fell into the “fix-it” pattern; it’s ingrained. We are a society of “fixers.” We want to listen to an issue, come up with a few reasonable alternatives and fix the issue. But what happens if there isn’t a solution? Or, really a problem to be fixed?

The “fix it” trap is a very common style of miscommunication within couples and families. Wait…miscommunication? They’re talking about an issue and the other person is trying to help them with it, how is that miscommunication? The miscommunication happens when the intent of the speaker and the intent of the listener don’t match up. You might be asking yourself, “How am I supposed to know what my spouse/child/friend wants or needs out of a conversation? I’m not a mind reader!” My response is simple, yet really difficult for many of us because it’s something completely different from our typical pattern…ask. You read that right, just ask the person what they want or need from the conversation.

During the exchange with my child, after seeing the eye-roll and hearing the frustrated huffing and puffing, I knew that I had not given them what they needed from me. However, I didn’t want to make an incorrect assumption, again, so I simply apologized and asked, “I’m sorry, how can I help you right now? Is this something you need to talk about or something that you need help figuring out?” Now, I know that people are going to read this and say to themselves, “I try asking my child/spouse/ friend what they need and they just get mad!” Yep! The pattern is ingrained in the other direction as well. Sometimes the speaker may not even realize that they aren’t seeking a solution, but an opportunity to talk. What are you supposed to do then? Listen.

Take the time to really listen to what the person is saying, validating his/ her experience (even if you don’t agree), ask some questions to clarify to make sure that you are truly understanding, and empathize with what’s happening. Giving the person your undivided attention will give you (and the other person) the opportunity the truly ascertain what’s needed from the conversation. Go talk!

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Are You Even Listening to a Word I Say?

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Have you ever been talking to someone and you are absolutely convinced that he/she isn’t hearing a word you are saying? Chances are you are right! Research has shown that the average person listens for 3 seconds before they start thinking about what he/she wants to say next. Researchers Miller, Sherod, and Phyllis developed a powerful communication tool called the Awareness Wheel, which includes a listening cycle. They outline very effective research based skills for listening:

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What Did You Say? 5 Ways to be a Better Listener

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Listening can be difficult. Our world is noisy. So are our minds. Even in our own homes, the constant noise of kids screaming, televisions blaring, podcasts streaming, phones buzzing, and our endless lists of things that need to get done that are running through incessantly in our minds creates constant noise. We try to escape the noise through headphones, but this just leads to nobody communicating with anybody.

I have noticed that we either never learned how, or are forgetting one of the most important and basic parts of successful relationships: actively listening and genuinely caring about what our loved one is telling us. We tend to do this well when we are first meeting people or are trying to make a good impression. But sadly, we forget its value when we come home.

Whether it’s just a distraction, our list of things to do, or simply overlooking the ones closest to us, we can all do a better job of listening. It’s a powerful way to show how much we care. It’s a way to honor the other person as important and valuable.

Julian Treasure’s Ted Talk “5 Ways to Listen Better,” is a short, succinct presentation on ways to improve our listening. Treasure describes listening as a skill (that should be taught in schools). He gives five exercises to practice and improve your ability as a listener:

1. Three minutes a day of silence (or at least quiet).
2. “The Mixer”—how many different streams of sound can you identify?
3. Savoring—enjoy mundane sounds (“the hidden choir”).
4. Identify different “listening positions” for different situations.
5. RASA: Receive, Appreciate, Summarize, Ask

I would add practicing “focused attention” to the list. Practice listening to something. Pay attention to how long you can focus. Notice when you get distracted from what you were originally listening to and then go back to focusing on it again.

Here is the link to the Treasure’s talk, if you have seven and a half minutes to spare.

My favorite quotes from this Ted Talk are:
• “Try to listen to [your spouse] every day as if it were for the first time.”

• “Conscious listening creates understanding.”

• “Listen consciously to live fully.”

I hope the noise doesn’t get in the way of our most meaningful relationships!

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Empathy In Action – How To Be A Reflective Listener

What is empathy? Empathy is the ability to recognize another’s feelings and take their perspective. Empathy in action is the ability to be with someone, listen to what they say, feel it with them, and be able to reflect it back. This is an important skill that can be applied to any and all relationships such as romantic relationships, friendships, or even work relationships. Here are some steps to become a reflective listener:

 Step 1 – Be Present

By this I mean be involved in the conversation and not distracted by something else. At times important conversations at home might take place in front of the television which may not be the best place to really grasp what each other is saying. By being free from distractions it helps you to listen and it helps the other person to feel like you are actively listening to them.

 Step 2 – Listen

Let the sender send their message.

Step 3 – Reflect Back

Reflecting back is essentially restating what they have just said using different words. The word reflect sounds like a mirror which is exactly what you’re supposed to do. Mirror the words back and paraphrase what they said. An example of a reflection is below.

Sender: Work really gets me frustrated sometimes. It’s like they don’t even care about my potential. All I do is listen to everyone else’s orders. I could do well if they just gave me the opportunity!

Receiver: You feel like the little guy at work. You want to be more independent and have more opportunities.

 Step 4 – Listen Again

Let the message sender keep going. They probably have more to say than what they have just said.

 Step 5 – Continue to Reflect

Reflect back again. It lets the person know that you heard what they just said. The way you speak and reflect also lets them know you empathize with them. If you have questions this would be the time for you to ask questions and clarify anything that you need to understand better. Feeling words are also great to add into your reflections. It lets the sender know you are really feeling this with them and fully understand what they have to say. A second example of a reflection with a feeling word is below.

Sender: Exactly! I mean I like my job it’s just I’d like the chance for growth. It gets old doing the same thing day in and day out.

Receiver: It sounds like you’re really frustrated by this.

A lot of times people just need us to listen instead of impart our opinions and thoughts on them. By just using those simple reflection tools you can have much more meaningful conversations with people. It helps us be able to understand better if we can take others perspectives and become less judgmental in our discussions.

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