Moira Cleary

@moira_cleary | contributor
Using my superpowers to help moms show up for themselves and their families while they raise their kids with chronic/ challenging needs. Uniquely qualified as a Certified Life Coach, Mindfulness Practitioner + Mom of 2 teenagers with rare as well as chronic conditions. ----- Host of Surviving the Waiting Room Podcast and Parent+ Caregiver Summit (Sept 2021)
Community Voices

Parent + Caregiver Summit: Children with Disabilities Edition

<p>Parent + Caregiver Summit: Children with Disabilities Edition</p>
Community Voices

New Podcast for Parents of Kids with Chronic Conditions

<p>New Podcast for Parents of Kids with Chronic Conditions</p>
Community Voices
Community Voices

Mom, when is it time to take care of your needs

<p>Mom, when is it time to take care of your needs</p>
Moira Cleary

How to Help Your Child With a Disability Not Feel Like a Burden

This is a difficult piece to write, but it’s so important. Difficult because perhaps I had something to do with it. I say perhaps because everyone processes information differently, so this may have happened on its own, or the seed was planted by me in moments of exhaustion and frustration. Yes, kids with illnesses, conditions and disabilities often need more than the average kid. Of course, they do! I mean, why does that even need to be said? Unfortunately, that can bring about a feeling that they are a burden to others. Even if we do our best to make their lives and ours as “normal” as possible. Even those things the outside world can’t see. The fact is, our normal is different. So different that we need to throw out all our old beliefs and trust ourselves to create new ones. Help my child know it isn’t them. Somewhere along the way, someone taught me that kids were manipulators. They will fake things or exaggerate them in order to get out of something. You know: “Oh, they are just faking so they don’t have to.” Or “It doesn’t hurt that bad.” Acting on those ideas usually happens when we are at a low point of energy. It is easier to act on what we were taught than to think with a clear head. It’s a very skewed way of looking at your own children, especially when they have more needs than the average child. It makes us suspicious and leads us to question even the truth of the situation. It is our responsibility to deprogram what we learned so our kids don’t feel like a burden. Tips: If you know there is something more to the story, ask in a safe and inviting way. Our go-to is “Is that true or something you want to be true?” and “Tell me more.” Trust that their level of pain can be different from your experience. That goes for emotional and physical pain. Sometimes it’s about self-preservation. Raising a child with a health condition can be exhausting at times. We are mentally, physically and spiritually drained, which is the reason it’s difficult to not let our body language speak for us. Putting ourselves in our kid’s shoes and seeing a parent snapping and worn out while they complained about your symptoms, how would you feel? Tips: It is so important to talk to your kids and let them know it has nothing to do with them. Maybe you had a bad night’s sleep or a tough day at work. Put the focus on the cause (symptom/illness) and asking your child what would be helpful for them. Let them know you’re tired and not at your best. Remember when I mentioned planting the seed? These are the points I was talking about. It happens when we are human and most vulnerable. This is how the seed was planted in my own house. She needed help, and at times all I could give her was frustration because I had nothing else to offer. In these moments, when she was confused about what was happening and in pain, all I could do was sound exasperated, be emotionally drained from the stress it was causing, and tell her to try to sleep. I had no answers to make this go away. It was years before I learned that my daughter felt like she was a burden when anything medical came up. The first thing out of my mouth was, “Why would you think that!” As she spoke, my mind flashed back to my behavior, and I took full responsibility. Our kids need to see us take responsibility for our actions. Not only is it about being a good role model, but also letting them know that we’re not perfect, we make mistakes, but we are willing to make things right. That night we had a long and honest talk. I knew what I did was the best I could do at that point in time and that all I could do now was to reinforce the more helpful behavior. I’ve had to come to terms with myself for that behavior. Now that I know better, I do better. Balance growth with ability. That one night of honesty opened up a whole new way for me to view behavior. Yes, it made me more mindful and present with things I couldn’t see. In other words, be patient! But it also opened my eyes to the fact she may need to do the same. Breaking behaviors and cycles means changing what we think is normal. Being a parent doesn’t just mean caring for our child with disabilities or illnesses. It also means that it’s our responsibility to help them grow and learn. But how do we do this when they are unable to do “normal” tasks? Humans like feeling helpful; it’s our way of contributing to society and the opposite of being a burden. So we need to think creatively. These are some questions to start playing around with: If we are doing for them, how can they do for others? How do we teach them so that when they are able, they can care for themselves? If they are not able to reciprocate doing for others, how can we help them to not feel like a burden? What are the ways they could do for others that may look different from the norm? How this shows up in our house: When they can, they do. I ask them to help me. I saw a big difference when I showed them that I need help too sometimes, and not just with chores. We take advantage of times to experience life outside of our house. We teach them how to think things through, like, “If I wasn’t here, what would you do?” For our kids, learning the feeling of being a burden is complicated. Sometimes we plant the seed; sometimes they learn it on their own. What is important is that we acknowledge the reason why, even if it is painful, so it can be addressed. Be patient with them as they try to talk about it. They might not understand it themselves or even know the word, but they know how they feel.

Community Voices

A Summit Created for Moms of Kids with Medical Conditions

<p>A Summit Created for Moms of Kids with Medical Conditions</p>
Moira Cleary

What to Do When People Don't Understand Your Child's Condition

My child isn’t faking it. Somewhere along the way, someone taught me that kids are manipulators. They will “fake” things or exaggerate them in order to get out of something. We’ve all heard or maybe even thought, “Oh they’re just faking so they don’t have to _____,” or, “It doesn’t hurt that bad.” And while testing their world is part of growing up, this idea hurts those who aren’t testing and are just trying to survive feeling the way they do. The internal conflict we feel as medical moms because of this can be maddening. We know what our kids are like when they think no one is watching. We see how they are trying to live a regular life. What can we do when someone questions the legitimacy of our child’s illness or symptoms? #1. Feel powerless. Yep. We can continue to fester. Powerless to the anger, grief and maybe shame we are feeling. This is often a person’s go-to because they don’t know a better way to handle the situation. This looks like not knowing what to say to: A therapist believing the physical symptoms have manifested A relative thinking a mobility device is over the top Friends not understanding what the big deal is #2. Avoid conflict or challenge. Consciously choose not to get involved with the situation. It is empowering at that moment, instead of jumping into defense mode or problem-solving to choose to walk away. This looks like: Choosing not to argue with the therapist that they are wrong Choosing not to engage/walking away from the relative who sees things differently Knowing it is not the time to help friends understand #3. Change the situation. Do what you can to intervene. Choosing to bring the situation closer to a solution outcome changes the dynamics. This looks like: Explaining to the therapist changing practices may be best Put the relative in your child’s shoes and ask if they would be more comfortable with a mobility device Letting your friends know how you feel #4. Alter your perspective of the experience. Think of this as the out-of-body experience. Become curious about the other person’s perspective. What they might be thinking and feeling not just what they are saying. How might that understanding change the situation? This looks like: Asking the therapist what kind of experience they have Explaining to the relative that although it’s out of the ordinary it is really helpful Addressing the outcome your friends want and seeing if there is more to it #5. Accept it. By practicing non-judgment we can accept the situation. What happened was not good or bad, it just was. In the scheme of life, it is not even a blip. You can move forward without resentment, worry, anger or even shame. This looks like: Hearing the therapist’s perspective as their opinion Understanding it is the family member’s opinion Knowing some friends will get it and others won’t Moving Forward If nothing else remember there are five ways to respond to a situation when it arrises. Use this idea to help yourself move from one option to another. Even if you don’t remember exactly what they are you will remember there is a different way to handle it. You just have to choose for it. Download as a PDF to keep handy. Helping Yourself Being a medical mom, having the energy to respond to a conflict is a battle in itself. Depending on my energy level I often start at #1 then circle back to another. It all depends on where I’m coming from with my energy. When I feel scattered, exhausted and drowning I respond accordingly. But when I’ve practiced quiet time, meditation and exercise my response comes from a much more patient and healthy place. It really is amazing the difference your energy for the day can have on your response to conflict. So I encourage you to find a few moments throughout your day to just be. Follow this journey on Focused Direction.

Moira Cleary

How to Help Your Child With a Disability Not Feel Like a Burden

This is a difficult piece to write, but it’s so important. Difficult because perhaps I had something to do with it. I say perhaps because everyone processes information differently, so this may have happened on its own, or the seed was planted by me in moments of exhaustion and frustration. Yes, kids with illnesses, conditions and disabilities often need more than the average kid. Of course, they do! I mean, why does that even need to be said? Unfortunately, that can bring about a feeling that they are a burden to others. Even if we do our best to make their lives and ours as “normal” as possible. Even those things the outside world can’t see. The fact is, our normal is different. So different that we need to throw out all our old beliefs and trust ourselves to create new ones. Help my child know it isn’t them. Somewhere along the way, someone taught me that kids were manipulators. They will fake things or exaggerate them in order to get out of something. You know: “Oh, they are just faking so they don’t have to.” Or “It doesn’t hurt that bad.” Acting on those ideas usually happens when we are at a low point of energy. It is easier to act on what we were taught than to think with a clear head. It’s a very skewed way of looking at your own children, especially when they have more needs than the average child. It makes us suspicious and leads us to question even the truth of the situation. It is our responsibility to deprogram what we learned so our kids don’t feel like a burden. Tips: If you know there is something more to the story, ask in a safe and inviting way. Our go-to is “Is that true or something you want to be true?” and “Tell me more.” Trust that their level of pain can be different from your experience. That goes for emotional and physical pain. Sometimes it’s about self-preservation. Raising a child with a health condition can be exhausting at times. We are mentally, physically and spiritually drained, which is the reason it’s difficult to not let our body language speak for us. Putting ourselves in our kid’s shoes and seeing a parent snapping and worn out while they complained about your symptoms, how would you feel? Tips: It is so important to talk to your kids and let them know it has nothing to do with them. Maybe you had a bad night’s sleep or a tough day at work. Put the focus on the cause (symptom/illness) and asking your child what would be helpful for them. Let them know you’re tired and not at your best. Remember when I mentioned planting the seed? These are the points I was talking about. It happens when we are human and most vulnerable. This is how the seed was planted in my own house. She needed help, and at times all I could give her was frustration because I had nothing else to offer. In these moments, when she was confused about what was happening and in pain, all I could do was sound exasperated, be emotionally drained from the stress it was causing, and tell her to try to sleep. I had no answers to make this go away. It was years before I learned that my daughter felt like she was a burden when anything medical came up. The first thing out of my mouth was, “Why would you think that!” As she spoke, my mind flashed back to my behavior, and I took full responsibility. Our kids need to see us take responsibility for our actions. Not only is it about being a good role model, but also letting them know that we’re not perfect, we make mistakes, but we are willing to make things right. That night we had a long and honest talk. I knew what I did was the best I could do at that point in time and that all I could do now was to reinforce the more helpful behavior. I’ve had to come to terms with myself for that behavior. Now that I know better, I do better. Balance growth with ability. That one night of honesty opened up a whole new way for me to view behavior. Yes, it made me more mindful and present with things I couldn’t see. In other words, be patient! But it also opened my eyes to the fact she may need to do the same. Breaking behaviors and cycles means changing what we think is normal. Being a parent doesn’t just mean caring for our child with disabilities or illnesses. It also means that it’s our responsibility to help them grow and learn. But how do we do this when they are unable to do “normal” tasks? Humans like feeling helpful; it’s our way of contributing to society and the opposite of being a burden. So we need to think creatively. These are some questions to start playing around with: If we are doing for them, how can they do for others? How do we teach them so that when they are able, they can care for themselves? If they are not able to reciprocate doing for others, how can we help them to not feel like a burden? What are the ways they could do for others that may look different from the norm? How this shows up in our house: When they can, they do. I ask them to help me. I saw a big difference when I showed them that I need help too sometimes, and not just with chores. We take advantage of times to experience life outside of our house. We teach them how to think things through, like, “If I wasn’t here, what would you do?” For our kids, learning the feeling of being a burden is complicated. Sometimes we plant the seed; sometimes they learn it on their own. What is important is that we acknowledge the reason why, even if it is painful, so it can be addressed. Be patient with them as they try to talk about it. They might not understand it themselves or even know the word, but they know how they feel.

Moira Cleary

What to Do When People Don't Understand Your Child's Condition

My child isn’t faking it. Somewhere along the way, someone taught me that kids are manipulators. They will “fake” things or exaggerate them in order to get out of something. We’ve all heard or maybe even thought, “Oh they’re just faking so they don’t have to _____,” or, “It doesn’t hurt that bad.” And while testing their world is part of growing up, this idea hurts those who aren’t testing and are just trying to survive feeling the way they do. The internal conflict we feel as medical moms because of this can be maddening. We know what our kids are like when they think no one is watching. We see how they are trying to live a regular life. What can we do when someone questions the legitimacy of our child’s illness or symptoms? #1. Feel powerless. Yep. We can continue to fester. Powerless to the anger, grief and maybe shame we are feeling. This is often a person’s go-to because they don’t know a better way to handle the situation. This looks like not knowing what to say to: A therapist believing the physical symptoms have manifested A relative thinking a mobility device is over the top Friends not understanding what the big deal is #2. Avoid conflict or challenge. Consciously choose not to get involved with the situation. It is empowering at that moment, instead of jumping into defense mode or problem-solving to choose to walk away. This looks like: Choosing not to argue with the therapist that they are wrong Choosing not to engage/walking away from the relative who sees things differently Knowing it is not the time to help friends understand #3. Change the situation. Do what you can to intervene. Choosing to bring the situation closer to a solution outcome changes the dynamics. This looks like: Explaining to the therapist changing practices may be best Put the relative in your child’s shoes and ask if they would be more comfortable with a mobility device Letting your friends know how you feel #4. Alter your perspective of the experience. Think of this as the out-of-body experience. Become curious about the other person’s perspective. What they might be thinking and feeling not just what they are saying. How might that understanding change the situation? This looks like: Asking the therapist what kind of experience they have Explaining to the relative that although it’s out of the ordinary it is really helpful Addressing the outcome your friends want and seeing if there is more to it #5. Accept it. By practicing non-judgment we can accept the situation. What happened was not good or bad, it just was. In the scheme of life, it is not even a blip. You can move forward without resentment, worry, anger or even shame. This looks like: Hearing the therapist’s perspective as their opinion Understanding it is the family member’s opinion Knowing some friends will get it and others won’t Moving Forward If nothing else remember there are five ways to respond to a situation when it arrises. Use this idea to help yourself move from one option to another. Even if you don’t remember exactly what they are you will remember there is a different way to handle it. You just have to choose for it. Download as a PDF to keep handy. Helping Yourself Being a medical mom, having the energy to respond to a conflict is a battle in itself. Depending on my energy level I often start at #1 then circle back to another. It all depends on where I’m coming from with my energy. When I feel scattered, exhausted and drowning I respond accordingly. But when I’ve practiced quiet time, meditation and exercise my response comes from a much more patient and healthy place. It really is amazing the difference your energy for the day can have on your response to conflict. So I encourage you to find a few moments throughout your day to just be. Follow this journey on Focused Direction.