Unexceptional Moms: Hope and Encouragement for Special Needs Parents

This is part two of an interview Erin and I did with our friend Main. If you have not listened to the first part. You can find the transcript and show notes HERE. The best way to support the podcast is by leaving a review on iTunes. Episode outline: Physical therapy: the difference between how disabled adults see therapy vs how parents of disabled kids see therapy. How to make choices when the medical community pushes for certain interventions. Finding the balance on how much to "push" our kids and letting them be gloriously themselves. What it is like for disabled adults to listen to parents of disabled children talk about caregiving. Things that contribute to parents of disabled kids and disabled adults to be at odds. "It's hard for me to feel a lot of sympathy or empathy when people talk about how hard it is to be a caregiver. Because as a caree I don't get a lot of sympathy. And there's no caree support group, where we can go and complain about our caregivers." Marin Hann Transcript available at ellenstumo.com

If you parent kids with disabilities and you are nondisabled, chances are you don't know much about disability culture. Personally, learning about my children's culture has been a journey and a process, something I don't always get right and I am still learning. In this episode of the Unexceptional Moms Podcast, Erin and I talk to Marin Hann -- who is disabled -- about disability culture and identity. We discuss how parents can build a bridge for their disabled children to learn about their culture, a culture as parents we do not belong to. Episode notes: Growing up as a disabled child being raised by non-disabled parents meant Marin's parents were not aware there was such a thing as "disability culture" and neither was Marin until her teen years. But yeah, my parents didn't know that there was a disabled culture, or what that meant, either. And it makes sense, because I don't know how they would have access to that prior. And they didn't really know anything much about raising a disabled child till I showed up. Marin Hann Marin explains internalized ableism as well as lateral ableism (the "hierarchy" of disability, and how problematic that is). And Erin and I express that even as parents of disabled kids, we are often ableist. Although we do not come with an answer, we tackle the topic of separating our children from their disability. We also discuss "the great divide," or the divide that exists between parents of disabled children and disabled adults. We address the history of disability, and how little our culture teaches about it. We discuss how watching the Netflix documentary, Crip Camp, is a good place to start. Marin: Your child has a disability, you think that there's not a cultural difference between the two of you, you think that you're from the same culture. Ellen: I did. Marin: Yeah. I did, too. I thought I was from my parents’ culture as well. Erin: That's really profound Marin and I think a lot of parents listening are gonna go, "Wow." Marin tells us a little about the Disability Pride Movement, and how important it is for parents to be a "bridge," connecting our children to their community/culture. We talk about the role of physical therapy as opposed to occupational therapy. The positives, and the unintentional messages sent when we push disabled kids to become as "non-disabled" as possible. This is especially understandable as parents are pressured by the medical model of disability. Transcript: ellenstumbo.com

If you parent kids with disabilities and you are nondisabled, chances are you don't know much about disability culture. Personally, learning about my children's culture has been a journey and a process, something I don't always get right and I am still learning. In this episode of the Unexceptional Moms Podcast, Erin and I talk to Marin Hann — who is disabled — about disability culture and identity. We discuss how parents can build a bridge for their disabled children to learn about their culture, a culture as parents we do not belong to. Episode notes: Growing up as a disabled child being raised by non-disabled parents meant Marin's parents were not aware there was such a thing as “disability culture” and neither was Marin until her teen years. Marin HannBut yeah, my parents didn't know that there was a disabled culture, or what that meant, either. And it makes sense, because I don't know how they would have access to that prior. And they didn't really know anything much about raising a disabled child till I showed up. Marin explains internalized ableism as well as lateral ableism (the “hierarchy” of disability, and how problematic that is). And Erin and I express that even as parents of disabled kids, we are often ableist. Although we do not come with an answer, we tackle the topic of separating our children from their disability. We also discuss “the great divide,” or the divide that exists between parents of disabled children and disabled adults. Related: Bringing Together Parents of Kids With Disabilities and Disabled Adults We address the history of disability, and how little our culture teaches about it. We discuss how watching the Netflix documentary, Crip Camp, is a good place to start. Marin: Your child has a disability, you think that there's not a cultural difference between the two of you, you think that you're from the same culture. Ellen: I did. Marin: Yeah. I did, too. I thought I was from my parents' culture as well. Erin: That's really profound Marin and I think a lot of parents listening are gonna go, “Wow.” Marin tells us a little about the Disability Pride Movement, and how important it is for parents to be a “bridge,” connecting our children to their community/culture. We talk about the role of physical therapy as opposed to occupational therapy. The positives, and the unintentional messages sent when we push disabled kids to become as “non-disabled” as possible. This is especially understandable as parents are pressured by the medical model of disability. Recommended resources by Marin: Kim E. Nielsen, A Disability History of the United States (REVISIONING HISTORY) James I. Charlton Nothing About Us Without Us: Disability Oppression and Empowerment. Defectives in the Land: Disability and Immigration in the Age of Eugenics by Douglas C. Baynton. War Against The Weak by Edwin Black. The New Disability History: American Perspectives edited by Paul K. Longmore, Lauri Umansky and, Why I Burned My Book and Other Essays on Disability by Paul K. Longmore are best read together. You can also check out Marin's Amazon list. While Marin has this list on Amazon for us to view, she wants to encourage us to buy from independent booksellers.

Most students who receive special education qualify for a "transitions" program that allows them to stay in school until age 21. These programs are meant to provide job training and life skills, preparing our kids to become as independent as possible. But are these programs really providing the type of training that is truly beneficial for our kids? Join the podcast as I have a conversation with Meriah Nichols from "Unpackin Disability With Meriah Nichols." Show notes: Before talking about employment training, we go back to the beginning and discuss the role that ableism plays in the limited options made available for our kids. Also important how as parents, sometimes we also have to address our own ableism (spoiler alert: it is one of the hardest things I've had to do as a parent of two disabled kids). A short discussion on grief, and the fact that most parents experience grief when their child is first diagnosed. Keeping in check the language we use, and what happens to our kids when we push them to be as "non-disabled" as possible. Finding empowerment in disability. What does that look like? How does that translate into future interests and possible job opportunities? How important it is to discover the gifts and possibilities that are a direct result of disability -- the assets. Inclusion: the current model of inclusion doesn't help our kids or their peers as we think about their future possibilities once they reach adulthood. How cana. school play to a student's strengths and build upon those strengths as possible career paths? Many programs and organizations that are meant to help our students tend to be steeped in ableism, and they do not provide ongoing change beyond one time events or experiences. There isn't much available after transition programs because of the limited "training" they provide. Meriah shares about her recent blog post: Navigating Beyond The Four F’s of Disability Employment How do we shift culture so that we create better "out of the box" opportunities for our children? Our kids depend on their community -- that is, the community of individuals who are like them. The community where they belong, where they can be who they really are. Show Transcript How to connect with Meriah Nichols: Her Blog: https://www.meriahnichols.com/ Facebook: Meriah Nichols Twitter: @meriahnichols Instagram: @meriahnichols

Online learning, hybrid models, or full-time school. These are the options and choices to navigate as this new school year begins in the midst of a global pandemic. What are we -- parents of kids with disabilities -- to do? Find show notes and a transcript at: ellenstumbo.com/epsiode38/

Because of social media, many people nowadays live their lives in “public.” From what you ordered at a restaurant, to rants about neighbors, to new hairdos. Everything goes… including sometimes our children’s privacy.

Ellen Stumbo, Kevin Timpe, and Carlyle King discuss the "great divide" between parents of disabled children and actually disabled individuals. 

The New Year is a great time to start "new." But how do resolutions work when we have already so much on our plate?

Parents of kids with disabilities have three main needs: Need for autonomy: being able to direct our lives. Need for relationships with people we love. Need for competence: being able to express ourselves in ways we are good at and receiving some recognition from our work. Entrepreneurship can be an act of radical self-care; an opportunity to craft what is in your heart into an income generating opportunity. What can we realistically do? How does this become self-care? We need to learn to listen to ourselves. Related: When the Primary Caretaker of a Child With a Disability Gets Sick Figure out your what. Get crystal clear on the what, then you can figure out the how. Learning your strengths are the ingredients for the how. Believe you are worth discovering yourself. We cannot balance all the things. You cannot give equal time or energy to all the things you do. We need to explore all the hard feelings (like anger, disappointment, sadness) and deal with them before we can truly experience joy and happiness and all the positive things. “Your work should serve your heart.” — Faith Clarke

Dr. Liz Matheis, a clinical psychologist, answers the following questions: What is the difference between stress and anxiety? What does anxiety look like? What can it look like? What's normal and when does anxiety become a problem? What are skills to learn or strategies so I can manage my anxiety better? If I have anxiety, does that mean that I have to see a mental health counselor or take meds? Can my faith help with anxiety? It's so frustrating to hear that I need to pray more and read my Bible.  

Parenting kids with disabilities means parents often times are more involved caretakers, but what if the primary caretaker gets sick? How does a family stay afloat during a medical crisis?

Ellen Stumbo and Erin Loraine chat with Jen Jacob, the Executive Director of the Down Syndrome Diagnosis Network. They discuss what parents need most when their child is diagnosed with a disability, what resources are helpful, and there is life after the diagnosis.

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Challenges of taking care of our kids. Lack of time to do everything. Learning to say "no." Cutting back where you can.

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"You are okay. You are enough. There are a lot of things you can do. it's okay to need help. You are not wrong or broken. There are other people like you."

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Friendships are hard as adults, then there are seasons in life when we feel especially isolated and friendships seem to be lacking, or put on the side. When you parent kids with disabilities, sometimes that isolation continues, and friendships can be challenging.

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How do you talk to your kids about their disability and when is the right time to do it? Join Erin and me as we talk with Tara and Tonia Christle about how to approach this subject and when. Erin and I knew we wanted the Christle twins to join us as they are adults with disabilities and they have great advice for us as parents. Listen to the show: Did you leave a review on iTunes yet? From the show: Erin and I mentioned we asked this question on Facebook, and we invited people to join in the conversation, leave your comment HERE. Every parent is different, and every parent approaches the how and when differently. While there is no right or wrong way to approach things, there are a few things that are important to keep in mind: As Tonia shared, disability is not inherently bad. There is nothing wrong with using the word disability, after all, our kids do have disabilities! Not using it, or looking at is as a bad word, can stigmatize and communicate shame. We do not want our kids to be ashamed of their disability. It is okay to talk about limitations or things that are different. What is important is that we do not talk about these issues in a negative way, but rather focusing on the fact that different is okay. Tonia uses the example of what she said to her little brother, “My legs are not as strong as yours, and that’s okay!” After hearing this, her little brother would say, “Your legs are not as strong as mine, and that’s okay!” It is helpful for kids to understand their own bodies and why they might be different, therefore, giving the name of their disability helps. For example, “I have a disability, it is called cerebral palsy, it means that my muscles and my body move differently, and different is okay,” or, “I have a disability, it is called autism, it means that my brain works different, and different is okay!” Disability is part of our children’s identity, it is not what defines them, but you cannot separate their disability from who they are. The most important part about talking to our kids about their disability is that we let them know we love them, completely, disability included. Always presume competence. For those of us who have kids with intellectual disabilities, we can often refer to, “they don’t really understand” but as Tara and Tonia encourage us, always presume competence. (This is something I teach every time I speak at churches).   We also talked about how often kids with disabilities feel pressured to be “typical,” and in turn, it can make them feel as if they are not good enough, not lovable enough, or ashamed. So when do we start talking about their disabilities? Kids with disabilities, even as young as grade school, have already experienced ableism. This is why the sooner we start talking about it, the better it is for them in order to understand and make sense of their experiences, so they do not feel there is something “wrong” with them. Tonia and Tara shared they never had those conversations, even now, and how helpful it would have been as children. We also talked about the 5 Stages of disability attitudes, and how pity is the most commonly experienced attitude since it is the most prevalent. Pity also comes across as niceness, and when we talk to our kids about their disability, we can address their experiences and reaffirm their feelings. As parents, sometimes we are the ones stuck on pity. It is pay, but it is important for us to move on through the stages. If we are stuck at pity, that ends up being what we communicate, and we do not want our kids to feel pity form us. Pity says, “that is so bad!” In the pity stage, disability is a tragedy. If you struggle with those feelings and have been there for a while, perhaps it is time to find a counselor to work through those feelings. As parents, we all move through the stages of disability attitudes, we all start with ignorance, move to pity, and eventually move to care, friendship, and eventually co-laborers. Tara brought up the prevalent ideology of, “overcoming disability” and she shared why that can be harmful for people with disabilities. This is one of those conversations that as a mom, it stops me in my tracks, so we talked more about this.  The Freebie: The freebie for this podcast comes directly from Tonia. She wrote the most amazing book to talk about disability. She originally wrote it for my daughter (and we read it for her class) but this is perfect for you if you want a script to talk to your kid about his/her disability, and to make it into book form. Go HERE to claim your free copy! So what about you? How and when did you talk to your kids about their disability? Don’t forget to stop by iTunes and leave us a review!

Our husbands join us today as we talk about issues pertaining marriage and parenting kids with disabilities.

Don't forget to download your free PDF copy of the gift guide http://www.ellenstumbo.com/episode10/

Join Erin and me today as we talk about how to survive the Holidays as special needs parents. Holidays are wonderful times to make family memories, but when we parent kids with disabilities, the extra stress of the Holidays can be hard on our kids, and therefore on us too! Holidays can be a wonderful time with family, but they can also be a stressful season. Beginning with Thanksgiving and ending with the New Year, the season is full of parties, school plays, baking, cooking, time away from home, disrupting routines, late nights, tears, laughs, long list of expectations of what makes Holidays memorable and at the end of the season, exhausted parents and exhausted kids that struggle to get back up. And when you parent kids with disabilities, you feel the chaos even more. How can you ever survive the Holiday season? The good news is, there are practical steps you can take to make it through the Holidays. And because I want you to feel you have a plan, I created a free resource for you: The Holiday Survival Guide for Special Needs Parents In this podcast Erin and I talk about what you can do to make this Holiday season a season where you truly make memories, rather than feeling as if you are merely surviving. We talk in detail through the Holiday Survival Guide, and offer practical tips and examples to help you start this season a step ahead.

Join Erin and me as we talk about cultivating thankfulness. Life can be challenging and messy, yet choosing to be thankful can change our outlook in life. From the show: In the midst of the hard and messy of life, we can choose to be thankful. Ellen shares how she has been cultivating thankfulness for the year 2016. It started with a hard 2015 and a realization that something needed to change. Ellen had spent so much time focusing on the bad, that she needed to switch her focus and focus on the good. This year has not been easier, but her outlook in life has changed dramatically. Ellen wrote about her plan at the beginning of the year, you can read that here: Challenge: A Year of Thankfulness Erin and Ellen discuss Ellen's latest post and go through the different areas in which special needs parents can find thankfulness. Read the post: Thankfulness: The Special Needs Way. Research shows that cultivating thankfulness has a positive impact in several areas of life. “Gratitude is an attitude and way of living that has been shown to have many benefits in terms of health, happiness, satisfaction with life, and the way we relate to others. It goes hand in hand with mindfulness in its focus on the present and appreciation for what we have now, rather than wanting more and more. Feeling and expressing gratitude turns our mental focus to the positive, which compensates for our brains’ natural tendency to focus on threats, worries, and negative aspects of life. As such, gratitude creates positive emotions like joy, love, and contentment which research shows can undo the grip of negative emotions like anxiety. Fostering gratitude can also broaden your thinking, and create positive cycles of thinking and behaving in healthy, positive ways.” Melanie Greenberg PH.D If you want to learn more about the psychology behind it, you can read the rest of Dr. Greenbergs article HERE. Ellen mentioned she chose thankfulness over gratitude after reading something that resonated with her. Gratitude is a feeling, thankfulness (or thanks-giving) is an action. And don't forget your FREEBIE this week: The Cultivating Thankfulness Printable PDF Graphics

Notes form the show: Erin and I share examples of the types of comments people say that can be rude. It is important to approach all situation with grace, and when appropriate, provide education. When hearing a comment, focus on intent. What is the person's intent? If we lash out to people and they had good intent, it might push them away and we don't want people to be sacred to ask questions or to interact with people with disabilities. If we can, it is best to respond in a way that educates. Erin and I discuss there are different ways we respond to 1) kids, 2) adults, 3) as a parent when your kid is the one who says the rude comments. Sometimes it is helpful to have scripts for certain comments that we encouragement often. Ellen shares about people asking "What is wrong with her?" when asking the question about her daughter with cerebral palsy and this is asked in her daughter's presence. Sometimes a little comedy and acting are appropriate responses. Erin shares three responses when you don't want to engage in a conversation about rude comments and you are ready to move on: Thank you for your concern Silence (silence is a response) I respectfully disagree Our FREEBIE is a swipe copy of what Ellen and Erin do when they engage in education with kids. Both Ellen and Erin do presentations at each of their kids' schools. The swipe copy includes a presentation on Down syndrome, the letter sent home with the kids, and the facts included in the back of the letter. These presentations and letters can be easily tweaked for different disabilities. The letter can also be used without a presentation as a way to "introduce" your child to his/her classmates and in turn educate the parents.

Join Erin and me today as we interview Mardra and Marcus Sikora about what happens when our kids with disabilities grow up. Marcus is an author, and he is also an adult with Down syndrome. Mardra, his mom, is also an author and has helped Marcus achieve his dreams. Marcus shares his book with us, and Mardra has some tips for us parents of younger kids. Our freebie this time comes directly from Mardra! Five quick tips from a parent of an adult with a disability to parents of a child with a disability. From the show: Marcus tells us all about his book, Black Day: The Monster Rock Band. (I highly recommend you check it out!) Mardra and Marcus talk about their relationship now that Marcus is an adult, the things they enjoy doing together. They also discuss Marcus' desire to become more independent, and Marcus added, he is a ready to have a girlfriend and live on his own. Mardra shared how much her son's artistic inclination is more a reflection of their family, and not a stereotype of Down syndrome. We asked Mardra to give us some advice as parents of younger kids with disabilities. Mardra shared that so much of her worries were unfounded, and that more than worrying we should focus on planning. She also had some more things to share, which is why we asked her to create a resource for us, and she gracioulsy agreed to create the 5 Tips for Special Needs Parents

Join Erin and me today as we talk about Down syndrome, what it is, the stereotypes, and the joys. If you do not parent kids with Down syndrome, I think you will still find yourself relating to much of what we have to say, especially when we start talking about stereotypes and how people perceive disability, and the joys! What we covered in the show: What is Down syndrome? Physical characteristics of Down syndrome (you can also find a post about it HERE) Myths and stereotypes Always happy Always loving They are angels God gives special children to special parents They can’t live independent lives, have a job, or marry They are perpetual children Because they have an intellectual disability, they cannot be smart They are a burden to their families The JOYS of parenting a child with Down syndrome Mentioned in the show: Born This Way: A reality show that follows the lives of adults with Down syndrome and their parents. One of our favorite shows! And as always, we have a freebie for you: 31 Facts About Down Syndrome What’s next: Stop by iTunes and leave us a review! We would appreciate that.

Join Erin and me today as we talk about isolation in moms of children with disabilities. We discuss the struggles of becoming isolated, how to prevent isolation, or how to pull out of it if you are already in it. If you would rather watch us on youtube, click here to see our smiling faces. Notes from the show: Erin's post: Are Special Needs Families Isolated? Erin shares where she was at feeling isolated. "Getting together with other people, I can't do that, my kids have to have yes on them at all times. When kids are involved I do';t have time to relax and talk to people, especially if it is i someone else's house. It is easier at my house, but is my house clean? Do I have something to feed them? Often times I feel it's not worth it." There are challenges about not being able to go somewhere and fully participate, or inviting people to your home where it feels like work. As a special needs parent, you have to think about every single detail. Sometimes you feel isolated because it seems as if people don't notice when you are missing. Sometimes it is easier to look at what other people are not doing right, rather than recognizing there is something we can do. Isolation can happen even in conversations, because our life can be pretty different that it makes us feel we have little in common with others. You can be around people and feel alone. Birthday parties can be hard. Are our kids invited? Does anyone show up at our kids' birthday parties? Friendships are harder for our kids because of disability and because of disability attitudes from other people.  Most moms with younger kids feel isolated, when you add disability to the mix, sometimes it feels like you do not move out of that isolation mode. So much is about children activities, and when our kids cannot participate it isolates us. We have a role to play and we can initiate. We are tired and have enough to worry about. But sometimes, when a friendship is worth it, people need to be chased a little bit. As you try and try, you learn together how to work as a family. You figure out new ways trying to make things work. Eventually, it can become a positive experience. But if we don't try again, we will never get to that place. Even when trying is hard, you have to be willing to put the energy and effort. In order to participate in life sometimes you need to put yourself out there. Our spouse is supposed to be our best friend. Marriage is our most intimate connection, investing in the marriage helps us have that strong bond. If the marriage is not doing well, it can lead to the greatest isolation, where even within your own home you feel isolated. Recommended Resources: For mental health illness, there is NAMI (national Alliance on Mental Illness). Joni and Friends family retreats. If you struggle with depression (or anxiety), finding a counselor can be incredibly helpful, here are two resources to help you find someone in your area as well as a helpful article from Family Life. Counseling Services and Referrals from Focus on the Family The Christian Counselors Network Article: Beating Depression as a Stay-at-Home Mom Make sure to subscribe to the podcast on iTunes and leave a review. Also, share with a friend! And don't forget your freebie!

From the show: For me (Ellen), dealing with my daughter's diagnosis of Down syndrome was a period of time where I struggled in my Faith. My constant question to God during those first few weeks was, "Why?!" Erin and I discuss the good that has come from our lives. We have more empathy and are more compassionate. We are able to minister to others. We've grown in our faith. We are different people as God has used this journey to refine us. We know God in a  different way. We have become strong advocates helping not just our kids but others too. We've learned more about friendship. We've learned to ask for help. How we have dealt with disappointment and challenges: Keep going through the motions. Holding on to the fact that God's goodness is not dependent on our circumstances. Breath prayers. Inviting people to pray for us. Worship. Taste and see that the Lord is good. Oh the joys of those who take refuge in Him! Psalm 34:8 We do not need refuge when things are going well and life is easy. we take refuge when the storms of life threaten to overtake us, and it is in these times that we can taste and see that the Lord is good.

Welcome to episode 2 of the Unexceptional Moms Podcast. Today, Erin and I are talking about what keeps us from taking care of us as special needs parents. As always, if you would rather watch us, you can find the podcast on youtube. Or, you can find us on iTunes! From the show: What keeps us from taking care of us? Guilt: We carry so much guilt about everything! We mention the Facebook Live video on guilt. Time: We are so busy. Child Care: It’s hard to find childcare when your child has a disability. Kara Deidert has a phenomenal resource on Respite called, “The Insiders Guide to Respite.” It is a free resource for parents who need a break and a solution to make it happen! Find it HERE. Money: Many of us have limited resources, and sometimes by the time you pay a sitter you don’t have anything left over to go on a date, go to the gym, or invest in you Exhaustion: We are too tired. Lack of self-esteem. Depression: The incidence of depression in parents of kids with disabilities. It is hard to ask for help. Why is it important to take care of ourselves? We are better parents, we have more fun, the hard days don’t affect us as much because we know we are going to get a breather. We need our sanity! We need rest, which in turn helps us have more energy. We need to be there for our families and take care of them. What would happen if by neglecting taking care of myself I no longer can care for my family and my kids? Ways to care for ourselves in different areas. Spiritual: It needs to be easy and it needs to be meaningful. Online devotionals. Jesus Calling. Erin uses an App called Through the Word. Worship music. Finding a place to worship. Physical: It doesn’t mean you have to go to the gym, we are aiming for easy and meaningful. Exercise. Take your dog on a walk. Dance with your kids! Emotional: What gives you life. Things that you love to do, like reading, coloring, photography. Remember the things you loved to do before you had kids. Book recommendations from the show: Sun Shine Down By Gillian Marchenko Still Life: A Memoir of Living Fully With Depression by Gillian Marchenko Practical: The Survival Guide Freebie! And of course we have a freebie for you today, “The Special Needs Parent Survival Guide.” With 13 practical ways to help you take care of you. And because we know you are busy, these are simple, easy, and effective to help you find peace in the midst of chaos. Get the Survival Guide!

Welcome to Episode 1 of the Unexceptional Moms Podcast. Today, Erin and I are talking about the podcast and why we named it, “Unexceptional Moms.” We introduce ourselves briefly and since kids are back in school and it’s only the beginning of the school year, we discuss 10 ways  to foster a positive relationship with […] The post 10 Ways to Foster a Positive Relationship With School [Podcast] appeared first on Ellen Stumbo.