Unexceptional Moms

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: 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: 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: 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 . 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:

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,  (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

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: : 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: What’s next: 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, to see our smiling faces. Notes from the show: Erin's post: 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 (national Alliance on Mental Illness). Joni and Friends . 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. from Focus on the Family Article: Make sure to subscribe to the podcast and leave a review. Also, share with a friend! And don't forget your freebie!