Why Our Kids With Disabilities Deserve Better ‘Life Skills’ From School

Why Our Kids With Disabilities Deserve Better ‘Life Skills’ From School

Several months ago, one of my daughters came home concerned about her youngest sister, who has Down syndrome and spends part of her day in the special education classroom. 

“Mom, did you know the kids from Miss Turner’s* class are made to clean the cafeteria?”

I knew my daughter and her classmates worked on “life skills,” but I did not know cleaning the cafeteria was part of it. The truth is, I never asked what “life skills” entailed. That was my mistake and I take full responsibility. I knew this class included cooking, learning monetary transactions, learning job related tasks, but I didn’t know it also meant she was wiping tables and stocking shelves with chips and other snacks. 

I was planning on talking to Miss Turner about this, but when I asked my daughter how she felt about cleaning the cafeteria she said, “I really like it mom. I have fun with my friends.” 

I am a parent who respects what my child has to say, and I do not want to take away something she enjoys doing with her classmates. I am positive what she enjoys is the social aspect of it, and I believe those positive social interactions are super important in school, especially when friendships can be so hard for our kids.

Related: An Inclusive Education Does Not Always Mean Friendships for Our Kids with Disabilities

Our kids begin to work on “life skills” early on because they may need more time to learn and practice these skills. Depending on the school, for some of our kids with intellectual disabilities this is part of their curriculum as soon as they begin middle school. 

On the positive side, when it comes to wiping tables, it is not “free labor.” The kids get paid every month for their work  and they can use their earnings to buy an assortment of “things” the teacher provides. However, I do not believe they are being taught to save money or “pay bills,” so the system is flawed. 

I don’t mind my child cleaning the cafeteria, but I do dislike and question the why of this task. Why are our kids so often being “trained” or “delegated” to food service? Specifically the shelving and cleaning up? This is not exclusive to our school — many “life skills” programs follow this line of work. It means schools across the nation are training our kids to wipe tables, as if this was the only job they were capable of. And this is the part I don’t like, because why is my kid not being taught the skills required to do other types of jobs?

I believe this is a direct reflection of where our society and education system are at in their disability attitudes. It says, “You can go this far, and this far only, so we will make sure you get this bit done really well.” And I reject that mindset. Nobody knows how far my kid can go, but if the highest expectation on her is to wipe tables, then we have already put a limit on her potential. I know with the right training and practice she can accomplish more. With the right supports, all our kids can accomplish more. 

What is also concerning is the “othering” that results from the student body seeing their disabled classmates as the individuals who clean up after them. The “service” people. This is going to directly impact friendships and relationships. I believe this is a contributing reason for why unemployment is so high for people with disabilities — the people doing the hiring have only seen our kids wiping tables and stocking shelves. 

It’s time things change. “Life skills” needs to be more. 

I want “life skills” to mean my daughter is spending time in the library, learning how to help students check out books, return books to the right shelves, and learn about the different genres and sections.

I want “life skills” to happen in the office, where my child can learn some secretarial work. Answering phones, filing paperwork, sorting mail and memos, or making photocopies.

I want “life skills” to happen in the classroom as a teacher assistant. Handing out worksheets, entering grades, or helping organize school supplies.

I want “life skills” to be more creative. 

I want “life skills” to push my kid to be everything she can be. 

Related: 7 Things I Want for My Children With Disabilities

And if at the end of the day when my daughter is grown up she ends up wiping tables, we are going to be okay with that. But we are not going to be okay with that if it is a direct result of limitations placed on her by others.

We are talking about the education and training kids with disabilities deserve in order to become fully functioning members of society. It’s time “life skills” training programs step up. Our kids deserve better. They deserve more. 

*Teacher’s name was changed to protect her privacy.

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An Inclusive Education Does Not Always Mean Friendships for Our Kids with Disabilities

An Inclusive Education Does Not Always Mean Friendships for Our Kids with Disabilities

Both of my children with disabilities receive an inclusive education — since kindergarten. They are now in middle school.

I’ve been fortunate. I have not had to fight for them to be included in the two school districts my kids have been enrolled in. 

We did rethink how to do inclusion as my youngest, who has Down syndrome, entered middle school. We are happy with her schedule and the balance she has of regular classes and the time she spends in the special education classroom.

Related: Rethinking Inclusion for My Daughter With Down Syndrome

As parents of kids with disabilities, many of us fight for this inclusion to happen. We want out kids to learn alongside their typical peers. The thing is, our kids can be excluded even when included in mainstream education. If they are sitting on their own or with their paraprofessional, if they cannot keep up with conversations, if they are not developmentally at the same stage as their classmates, chances are they are not connecting with their peers. At least not in meaningful ways that lead to real friendships.

I have been to the middle school several times this year. Mostly to help with fun activities in my daughter’s special education classroom. I have had the opportunity to watch her interactions with her typical peers. Kids know her, many greet her and say hello. She even has a group of girls from her elementary school that she sits with during lunch. But that doesn’t mean she’s part of the group.

During lunch, she sits at the same table as the other girls, but the cafeteria is loud. The girls talk and giggle and speak so fast. My daughter cannot keep up with the fast pace of the conversations. Once in a while she tries to ask them questions or interact with them, but as soon as they respond they move on from interacting with her. She is sitting right in the middle of the girls, yet she is not a part of the group. It breaks my heart.

These are nice girls, and while we call them “friends,” they are not really her friends. They are not inviting my daughter to their parties or wanting to spend time with her outside of school. 

Related: My Kindergartner With Down Syndrome Has a Friend

Now that we are in middle school, the developmental gap continues to grow. It was much easier in elementary school. We did get party invitations and I heard from other moms how much their little girls loved my rascal. Even in fourth and fifth grade she had the most amazing friend of all. A friend who invited her for playdates after school, invited her to her birthday parties, and who naturally facilitated connections between my daughter and other girls. But it is now middle school. My kid is in a fully inclusive learning environment, but she has no real friends in this setting. 

I wish friendships were as simple as they were when she was little.

But I have also watched her interact with her friends in the special education classroom. I have watched her tease, laugh, and play with peers who, like her, have intellectual disabilities. They have fun together. They learn together. They help each other. They are patient with each other when speaking, or when someone uses a communication device. 

An inclusive education leads to many positive interactions between typical kids and disabled kids, (and this is important). But it doesn’t necessarily mean true friendships.

This is why friendships for our kids within their own communities are so important. This is why we are trying to prioritize events put out by our local disability organizations. Why we make it a priority to go out for lunch or do an activity with her friend who has Down syndrome (and who goes to a different school). 

I have many friends who have adult children with disabilities. Their children have busy (and I mean busy) social lives, spending time with friends who are disabled, like them. 

As parents, I wonder if we place too much hope in friendships developing as a result of inclusive education — as if having typically developing friends was the “goal.” My goal for inclusive education is for my kid to learn while at school. To learn to interact with typical peers — who she will be working with as an adult. If a real friendship stems from that, great.

But when it comes to friendships, I am encouraged and happy because my kids belong to communities where they will find life-long friendships and support. They may not have many friends at school, but they can have friends to hang out with after school, or on the weekends, or during summer break. You know, real friends. 

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I Am ‘That Mom’ When It Comes to Fighting for My Kids With Disabilities

I Am ‘That Mom’ When It Comes to Fighting for My Kids With Disabilities

It took two and a half years to get the services I needed for my kids since we moved to Minnesota. That was several social workers, several of the same evaluations (so frustrating) until finally things happened.

Actually, things started moving and happening after I quit my full-time job so I could devote all my time and energy to care for my girls. It should not have come to that, but it did. 

I am “that mom,” who shows up at IEPs with treats, but also makes it clear, “this is non-negotiable.”

I am “that mom” who shows up at parent-teacher conferences and tells the teachers, “You can put your computer away, today you get a lesson about my child.” And I go through printed materials and make them read out loud the handouts I give to them (because did you know in middle school and high school most general education teachers don’t read the IEP? All they do is get instructions form the special education teacher and that’s it). So I have to be “that mom” in order to get teachers to understand the complexities of each of my two kids who have IEPs.

Related: Dear General Education Teacher, Let’s Talk About Your Role in My Child’s Education

I am “that mom” who — to my children’s embarrassment — emails teachers when inclusion is “forgotten,” because nobody puts my kid behind a piano at a choir concert. (I talked to the choir teacher and he is lovely, extending grace is a thing but “that mom” will come out swinging when something that should have never happened, happened.)

Related: Dear Choir Teacher, Are You Really Including My Child With a Disability?

I am “that mom” who spends hours on the phone with insurance, making sure one of my kids doesn’t go without medication or the adaptive equipment she needs.

I am “that mom” who posts on social media calling out the ableism my kids experience on a regular basis.

I am “that mom” who becomes “that friend” when people use derogatory language or make jokes at the expense of people with disabilities. They should know better.

I do all this because I have to be “that mom.”

I have fight for my kids because if I don’t, then who will? I know I am not alone in this battle, and there are many other parents of kids with disabilities and now, a generation of disabled adults who are speaking up and leading the efforts in disability advocacy so we can join in as allies. But I am the only person walking in to the IEP meeting (even with an advocate, it is an IEP for my kid). I am the only one who can fight insurance on their behalf. The only one who can confront teachers when an IEP is not being followed. And my kids are vulnerable, much more vulnerable than many other kids.

So I will keep being “that mom” for my kids as long as they need me to be.

Maybe sometimes I don’t recognize I don’t have to fight so hard, but past experiences have told me I have to in order for anything to get done.

Perhaps when individuals with disabilities are truly considered in all aspects of our society, I won’t have to be “that mom.” But until then, yes, I am “that mom” and proud of it.

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Let’s Talk About Resolutions as Parents of Kids With Disabilities

Let’s Talk About Resolutions as Parents of Kids With Disabilities

Everyone is talking about resolutions. For many, this is a time of “new beginnings.” But if you feel like your plate is already full, making resolutions could feel like piling on more “work.”

It doesn’t have to be that way.

Join Erin and me as we talk about the realities of making New Year’s resolutions when you parent kids with disabilities and you feel your life is already overflowing with too much.

 

Notes from the show:

  • When you plate is already full, do you add more to your “to do” list by taking on  resolutions?
  • One way to make resolutions more manageable is to spread them out throughout the year.
  • The key to making resolutions happen: make them realistic.
  • Resolutions can be as simple as making small changes. Just one small change each week.
  • It is okay of you have “stereotypical” resolutions.
  • It’s okay to have no resolutions at all.
  • Self-care activities are always good resolutions to have.
  • Evaluate your time. Take this as an opportunity to look at where you are, how far you have come, and where youw ant to be.
  • Even if you make no resolutions, we encourage you to make just one: cultivate thankfulness. It will make your life better. And there are apps to help you with that!

God Doesn’t Give ‘Special Children’ to ‘Special Parents’

God Doesn’t Give ‘Special Children’ to ‘Special Parents’

Almost every parent of a child with a disability I know has been told at some point that, “God gives ‘special children’ to ‘special parents.'” I hear some parents find this sentiment comforting, but the majority of us just roll our eyes.

Father holding baby

We know we are not “special.”

As a matter of fact, we are pretty ordinary. I have said this before, we are the you you would be if your child had a disability. 

Related: Why My Kids With Disabilities Don’t Make Me a ‘Special Type of Person’

Sure, some parents are nice, but some turn out to be bad parents. Like all parents, some are good, some are bad, some are optimistic, some are abusive, some are warriors, some are neglectful, some are exhausted, some have addictions, some do a marvelous job at portraying perfection on Instagram. It’s the reality of being a parent, it can bring out the best or the worst in you — and sometimes both. 

Nothing “special” to see here.

Also, can somebody please point out to me where exactly in the Bible it says this? If we are claiming to know God’s intention, surely we can find it in scripture. We hear it so often and with such conviction there must be some passage in scripture that says, “God gives ‘special’ children to ‘special’ parents.” Except you won’t find that in scripture.

Instead, this is what you will find:

Children are a gift from the Lord;
They are a reward from him.

Psalm 127:3 (NLT)

“And be sure of this: I am with you always, even to the end of the age.”

Matthew 28:20b (NLT)

So to recap, this is what we do know based on actual scripture if we are going to claim we know God’s intention:

Children with disabilities are a blessing (as are all children).

We can acknowledge that parenting kids with disabilities is more. As parents, we have to stand against so many obstacles to ensure our children have their best life. We take on  the giants that are insurance companies, school districts, sometimes even a medical system that sees our children as “less” and unworthy of certain medical interventions. And often, we do this in isolation, because this parenting kids with disabilities can be lonely — for us and for our kids. But we do it nonetheless with the promise (for those of us who have faith) that whatever comes our way, God promises to be with us. Always. To the end.

Related: 9 Worries I Have as a Parent of a Child With a Disability

God doesn’t give “special children” to “special parents.” He gives children with disabilities to ordinary parents. They are His blessing, and He promises to walk with us.

One thing I will concede is that for many of us, our kids with disabilities do make us better people. Not “special,” but rather more accepting and understanding and loving.

So when we reach out and ask for help, please remember we are not extraordinary and of a super human variety. We are so ordinary that we get weary and we cannot do it all on our own. We are asking for help because we are exhausted, we feel isolated, and we need a friend to reach out and walk along our side.

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The 34 Books I Read in 2019

The 34 Books I Read in 2019

My goal was to read 24 books. Then I quit my job in September and with less stress I read more and watched less Netflix. I also listen to some books on tape and that means I can “read” while cooking, cleaning, driving, etc.

These are the books, and what I thought about each of them:

The following are affiliate links. It means if you decided to buy one of the books, I make a small commission at no additional cost to you and this helps me cover the cost of hosting fees to keep this website going.

1. Raymie Nightingale by Kate DiCamillo
Genre: Children’s Literature
5 out of 5 stars
I absolutely loved this book. The book deals with divorce and we see how Raymie tries to “fix” things to bring her father back. I fell in love with Raymie and her friends. It is a book about friendship.

2. Meet Cute: Some People Are destined to Meet by Various Authors
Genre: YA
1 out of 5 stars
I was disappointed by this one.

3. The House of the Spirits by Isabel Allende
Genre: Historical Fiction, Magical Realism
1 out of 5 stars
I wanted to like this book, it is a “classic” and highly celebrated but I could not get past the main character being a rapist and murderer. There is also incest and abuse and not enough redemption for me to personally enjoy a story.

4. An Unkindness of Ghosts by Rivers Solomon
Genre: Science Fiction
4 out of 5 stars
I am not a sci-fi person but I enjoyed this story. I found the ending to be unfinished and wonder if there will be a sequel or if I missed some big revelation.

5. Still Me by Jojo Moyes
Genre: Literary Fiction
3 out of 5 stars
This is the third of a series and other than the rating I have on goodreads I cannot remember anything about it. That says something, right? It wasn’t memorable.

6. The Amulet of Samarkand by Jonathan Stroud
Genre: Children’s Literature
4 out of 5 stars
It is a book about magicians and magical beings. Not like Harry Potter, but a good story nonetheless.

7. I Am Not Your Perfect Mexican Daughter by Erika L. Sanchez
Genre: YA
4 out of 5 stars
The main character is hard to like. At the end of the book you learn why she is the way she is and things make sense. I was hoping to find this story relatable as I feel I am not a perfect Mexican daughter, but none of my story and experiences were in this book, and that is okay.

8. Bridge of Clay by Markus Zusak
Genre: Literary Fiction/YA
5 out of 5 stars
Honest truth, this book is slow and at first confusing. But Markus Zusak writes the most beautiful sentences and I read them again and again simply for the pleasure of it.

9. Eleanor Oliphant Is Completely Fine by Gail Honeyman
Genre: Literary Fiction
5 out of 5 stars
It’s easy to like Eleanor. It is a book about how childhood trauma can affect people years later, and we need others for courage, support, and strength.

10. My Grandmother Asked Me to Tell You She’s Sorry by Fredrik Backman
Genre: Literary Fiction
4 out of 5 stars
Not as good as “A Man Called Ove” but Backman once again writes memorable characters.

11. The Hate U Give by Angie Thomas
Genre: YA
5 out of 5 stars
I learned about black culture (I was ignorant to many things) and got to understand police brutality through the eyes of a black person. This book is important.

12. The Girl Who Drank the Moon by Kelly Barnhill
Genre: Children’s Literature
4 out of 5 stars
Barnhill crafts beautiful sentences, it is a treat to read. While the book is about magic, she also blends in aspects of magical realism, which I loved!

13. A Map of Days by Ransom Riggs
Genre: YA
4 out of 5 stars
This is the fourth book in a series (Miss Peregrine’s Peculiar Children) and this book takes us a different direction from the previous three. I really like where this is going and I’m waiting for the next book.

14. The Reason I Jump: The Inner Voice of a Thirteen-Year-Old with Autism by Naoki Higashida
Genre: Memoir
4 out of 5 stars
This book was translated from Japanese and I question how accurate the translation is. I suspect the translators took liberties and painted all people with autism as the same. The book is a great insight into the mind of one person with autism, not all people with autism (as the translation suggests). Great read nonetheless.

15. Nine Perfect Strangers by Liane Moriarty
Genre: Literary Fiction
4 out of 5 stars
Confession: I love Moriarty’s writing and have read all her books. This was a fun read.

16. Merci Suárez Changes Gears by Meg Medina
Genre: Children’s Literature
5 out of 5 stars
I loved this book. The Spanish, the family dynamics… I revisited my grandparents (and family) through Merci, and my grandfather had dementia which made the story even more relatable. Well deserved Newberry win!

17. Meg, Jo, Beth, and Amy: A Graphic Novel: A Modern Retelling of Little Women by Rey Terciero
Genre: Children’s Graphic Novel
4 out of 5 stars
This is a true retelling of a beloved story where we have a blended, bi-racial family in modern day and Jo is keeping a secret from her family, afraid they won’t accept her for who she is. Some parents may have issues with some of the topics discussed based on their child’s age.

18. The Night Diary by Veera Hiranandani
Genre: Children’s Literature/YA
5 out of 5 stars
I was so ignorant about the partition of India and Pakistan, this book opened up my world to a part of history I didn’t know about.

19. Louisiana’s Way Home by Kate DiCamillo
Genre: Children’s Literature
5 out of 5 stars
The story continues! This is one of Raymie’s friends, and her world is turned upside down. Family is not who you are born into but who you choose (and who chooses you). I loved this book.

20. Love, Hate & Other Filters by Samira Ahmed
Genre: YA
4 out of 5 stars
Another book that opened my eyes to other cultures. Cute book.

21. Willa of the Wood by Robert Beatty
Genre: Children’s Literature
4 out of 5 stars
Cute story. Unfortunate there is a big gap between this book and the next one coming out.

22. Ugly by Robert Hoge
Genre: Children’s Lit/Memoir
5 out of 5 stars
This book is good for kids, all kids. The ones who have differences, the ones who feel they don’t fit in, the ones who may be tempted to tease or bully.

23. A Curse So Dark and Lonely by Brigid Kemmerer
Genre: YA
5 out of 5 stars
Retelling of Beauty and the Beast, except our heroine has cerebral palsy and things are not as magical as the Disney version. Second book comes out in a few days and we pre-ordered it.

24. Dumplin’ by Julie Murphy
Genre: YA
4 out of 5 stars
The characters feel like real life people. These are your neighbors, your classmates, your coworkers.

25. Eleanor and Park by Rainbow Rowell
Genre: YA
5 out of 5 stars
This was my second time reading it, so it is a favorite YA of mine. Eleanor has a difficult home life, she’s new in school and overweight. Park just wants to fit in, but he likes Eleanor. Swoon.

26. The Cuckoo’s Calling by Robert Galbraith (AKA J.K. Rowling)
Genre: Mystery/Literary Fiction
3 out of 5 stars
It is J.K. Rowling so I had to read the book. I was underwhelmed — felt not enough happened.

27. The Sun Is Also a Star by Nicola Yoon
Genre: YA
5 out of 5 stars
Second time reading the book. I am a fan of Nicola Yoon’s writing style. Not every immigration story has a happy ending, but you make it work.

28. The Silkworm by Robert Galbraith
Genre: Mystery/Literary Fiction
4 out of 5 stars
By this second book I thought, “Okay, this is more like the J.K. Rowling I love!”

29. Career of Evil by Robert Galbraith
Genre: Mystery/Literary Fiction
4 out of 5 stars
By this point, I was committed to the series and invested in the two main characters and renting the BBC series based on the books. I loved that in this book she alternated POV and we got the killer’s first person narrative, not knowing who he was.

30. Lethal White by Robert Galbraith
Genre: Mystery/Literary Fiction
4 out of 5 stars
This was J.K. Rowling going back to her Harry Potter way of narrative (except these are not children’s books!)

31. Beverly, Right Here by Kate DiCamillo
Genre: Children’s Literature/YA
5 out of 5 stars
The final book of the trilogy. Swoon over these books! My favorite of the year. Beverly is so rough around the edges but you just cheer her on and see all the goodness inside her she tries to hide. Your heart hurts because hers hurts, too. This is a series I will be reading again and again.

32. The Thing About Jellyfish by Ali Benjamin
Genre: Children’s Literature
3 out of 5 stars
I feel conflicted, I listened to the book on tape and didn’t love how the reader interpreted the character. I suspect the main character is autistic (one of many women who are not diagnosed until adulthood?) She also has selective mutism. The book journeys with her as she tries to make sense of the death of her former best friend.

33. Frankly in Love by David Yoon
Genre: YA
4 out of 5 stars
I appreciated learning more about first generation Korean-American kids, growing up with one culture at home and a different one in society. I found the plot predictable. How he incorporated Korean language into the story was beautiful.

34. Educated by Tara Westover
Genre: Memoir
5 out of 5 stars
It is not easy to survive childhood trauma, confront your abusers, and be told you are lying and sinful. But it is possible to work through and create your own path.

Related: The 23 Books I Read in 2018

Here is a breakdown of the books I read this year, in case you are interested:

Books with Disability Representation:

  1. An Unkindness of Ghosts (mental health, trauma, amputee, autistic-presenting)
  2. I Am Not Your Perfect Mexican Daughter (mental health)
  3. Eleanor Oliphant Is Completely Fine (autism, trauma)
  4. The Reason I Jump (autism)
  5. Merci Suárez Changes Gears (alzheimer’s)
  6. The Night Diary (selective mutism)
  7. Ugly (facial differences)
  8. A Curse So Dark and Lonely (cerebral palsy)
  9. The Cuckoo’s Calling (amputee, trauma)
  10. The Silkworm (amputee, trauma, intellectual disability)
  11. Career of Evil (amputee, trauma)
  12. Lethal White (amputee, trauma)
  13. The Thing About Jellyfish (autistic-presenting, selective mutism)
  14. Educated (trauma, traumatic brain injury, stutter, learning disabilities, mental health)

Related: The 20 Books I Read in 2017

Own Voices (#weneeddiversebooks)

  1. The House of the Spirits
  2. An Unkindness of Ghosts
  3. I Am Not Your Perfect Mexican Daughter
  4. The Hate U Give
  5. The Reason I Jump
  6. Merci Suárez Changes Gears
  7. Meg, Jo, Beth, and Amy
  8. The Night Diary
  9. Love, Hate & Other Filters
  10. The Sun Is Also a Star
  11. Frankly in Love

My top three reads of the year:

  1. This series: Raymie Nightingale, Louisiana’s Way Home, and Beverly, Right Here
  2. The Hate U Give
  3. Eleanor Oliphant Is Completely Fine

Tell me in the comments what book in this list you may want to read next (and also what book you recommend I read in 2020).

What Working Options Do Parents of Kids With Disabilities Have?

What Working Options Do Parents of Kids With Disabilities Have?

I recently resigned my job as the Parenting Editor for The Mighty. Having a full-time job and caring for two kids with disabilities (insurance, waivers, therapies, medical care, specialists, IEP meetings) was all too much. My part-time options — options that pay well — are few and far in between. And I know I am not the only parent who faces this issues.

We need more options for working parents of kids with disabilities — flexible options. What if we could be the ones creating those options?

Join me as I talk to Faith Clarke about working options for parents like us. Spoiler alert, she talks about how we can turn our passions into work for us. But how do we even go about it? Is that even a possibility? Faith’s interview has me dreaming all kinds of dreams and I hope it does the same for you.

Listen to the show:

Don’t forget to leave a review on iTunes or stitcher.

Outline from the show:

Parents of kids with disabilities have three main needs:

  1. Need for autonomy: being able to direct our lives.
  2. Need for relationships with people we love.
  3. 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

Contact Faith Clarke:

Faith@melodyofautism.com
Faith Clarke’s website.
Parenting Like a Ninja book (<— affiliate link)

*Transcript in progress

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Dear Choir Teacher, Are You Really Including My Child With a Disability?

Dear Choir Teacher, Are You Really Including My Child With a Disability?

On Monday, my kids had a choir concert. My daughter — who uses a wheelchair — rolled herself confidently to the stage, full of energy and a smile on her face. Then she took her place. Behind the piano. Completely out of sight. The other kids also took their place — on risers. 

I went to see my kid perform at her choir concert and I couldn’t. I had to walk to the front of the auditorium and sit on the floor so I could watch her. I felt angry. 

This is not the first time we have had issues with her placement in choir. Last year, with a different teacher, we had the same thing happen. New teacher, and we are dealing with the same “oversight.” I try to extend grace, but at some point these “oversights” are no longer oversights. I mean, students with disabilities have been participating in choirs for years. 

Related: I Shouldn’t Have to Fight for My Daughter With a Disability to Be Considered by Educators

Even before my daughter was in middle school, we attended a choir performance for my oldest daughter and a student in a walker was placed at the far end of the choir formation, on the ground level while all other students were on risers. The student was not truly a part of the choir, she was on the side, on her own. That’s not inclusion.

Inclusion means making sure everyone belongs, and pushing kids with disabilities to the side — or out of sight — is unacceptable.

When I posted about it on Facebook, several disabled adults (and other parents) shared they had similar experiences in choir. Why does this keep happening? Why is this a thing?

My daughter talked to her choir teacher after the performance (she is becoming a great advocate for herself). After she spoke to him I emailed him to make sure this never happens again. My email was not very friendly, but the teacher responded very well to an email from an “angry mom” and I am hopeful this won’t be an issue moving forward.

Related: Why Kids With Disabilities Are Left Out of Their Yearbooks, and Why This Needs to Change

There are simple modifications that can make choir a truly inclusive environment and experience.

If there are risers, consider the first row being on the main level, so anyone who uses adaptive equipment or who struggles with balancing on a riser is on the same row as peers.

Consider placement in relation to the piano and how the piano creates a visual barrier. No kid in a wheelchair should be hiding behind a piano.

Unless it is truly because of vocal arrangement, let’s not have the kids with disabilities always at the end of rows. 

There are many choir teachers who get it right. Perhaps they learned it. Perhaps they have a loved one with a disability so it is natural for them to recognize the things that create barriers for our kids. Regardless, every teacher can make the necessary changes to have a truly inclusive choir. 

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7 Things I Want for My Children With Disabilities

7 Things I Want for My Children With Disabilities

We live in a world where disabled individuals are often marginalized, ignored, and excluded. I worry that my kids move and live in a world that often sees them as simply “less” because they are disabled

So this is what I want for them:

1. Acceptance

I want people to accept them, not regardless of their disability, but with their disability included. Having a disability doesn’t make them less human or valuable. I want my kids to be acknowledged as individuals who have a right to exist in the world, to pursue their dreams, to participate in the social spaces they want to be a part of. 

Related: Having a Child With a Disability Is Not ‘Less’

2. Friendship

I want my kids to know real friendship — the type of friendship that is two sided. That means playdates, hanging out, and invitation to parties, spending time together outside of school activities. Not a “service project” or someone “being nice,” but a true friend.

3. Happiness 

I want my kids to be happy. It is really that simple. 

4. Fulfillment

I believe all of us as humans look for something that gives us fulfillment. A passion. A cause. A fire in your belly that helps you live your heart out. I want that for my kids. I want them to find fulfillment in what they chose to do. Not what I think is worth their time, but what they want to do.

5. Self-advocacy

As a parent of children with disabilities, I will always advocate for them, but the older they get, the more I need to help them become their own advocates. And eventually, it may be appropriate for me to step aside and allow them to lead.

6. Self-autonomy

Our kids with disabilities don’t have much say in what happens to them. Many of our kids have been poked and prodded by doctors, and while it is done to help them, they often have little say in what happens to them. It is the therapies, the interventions, the new thing we are trying. As my kids grow and as I learn from the disability community, self-autonomy is something our kids don’t experince much. As their parent, I want to respect and value what my kids have to say about themselves. I will respect the choices about themselves they make. If my child hates physical therapy but loves swimming and gymnastics, let’s make that the physical therapy and see how it goes. If my child doesn’t want to attend an event because the atmosphere is overstimulating, I will not force them to be there. It’s respecting their voice. 

Note: This is not referring to emergency or life saving medical intervention. 

Related: What the Medical Model Gets Wrong About Children With Disabilities

7. Independence

Ultimately, I want my kids to be as independent as possible. And for the areas where they struggle, I will be right here when they need me. I am not going anywhere, my kids may always need my support

Note: It is hard to let go, but I am working on it.

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This Is Anxiety When You Parent Kids With Disabilities

This Is Anxiety When You Parent Kids With Disabilities

Anxiety.

Such a broad topic. Yet one many parents of children with disabilities, chronic conditions or parents of medically fragile children are intimately familiar with.

Dr. Liz Matheis, a clinical psychologist who specializes in anxiety — among other things — meets us right where we are as parent caretakers. She understands where our anxiety stems from, she affirms us, explains why we may be experiencing the anxiety we are having, and offers some practical solutions so we can better manage that anxiety.

This is an episode you don’t want to miss.

Listen to the show:

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Questions addressed in the show:

  • 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.

Transcript of the show:

Ellen 0:26
Welcome to Episode 33 of the Unexceptional Moms Podcast. I am your host, Ellen Stumbo from ellenstumbo.com, and today we’re going to be talking all things anxiety. This is a topic that a lot of our listeners have been asking about, so we decided to go ahead and tackle this big topic. Now, I know that anxiety is so broad, so this episode is just a little bit different in that we actually went through questions that our listeners sent in, our patrons who had questions about anxiety got to send their questions and we went through those questions with Dr. Liz Matheis. So let me tell you a little bit about Dr. Liz — I actually met her when I was working at The Mighty and I loved collaborating with her, so I knew I wanted her to be the one to come and talk about anxiety. She is a licensed clinical psychologist, and she has her own practice that she does alongside her husband. Her private practice specializes in anxiety, ADHD, autism, learning disabilities and behavior management. She is also a mom of three kids. Her kids are 13, 10, and 6, and she says that her kids keep her on her toes but they also help her connect with parents who are going through similar developmental phases with their children. She is very familiar with the world of disability and she is very familiar with the world of anxiety, so we had a really great conversation. Unfortunately, Erin was not able to join us this time. But also, I want to share with you that Dr. Liz created some pretty amazing resources for all our listeners. She created an anxiety checklist for adults, and an anxiety checklist for kids. Anxiety self-care strategies for adults — this is also a handout — and also one on strategies for anxiety management for your child. So stay tuned until the end of the episode so I can tell you how you can get your hands on her handouts. Here’s the interview. Enjoy.

Ellen 2:34
Hi, Dr. Liz, thank you so much for joining us today.

Dr. Liz 2:38
Thank you so much for having me.

Ellen 2:40
So we’re going to talk all things anxiety.

Dr. Liz 2:43
It’s a great topic.

Ellen 2:44
It’s a great topic and I am someone who was an anxious child and I became an anxious adult and then I had kids with disabilities and then my anxiety got on steroids.

Dr. Liz 2:58
I feel your pain. I was also an anxious child and anxious teen and anxious young adult, had children and I’m an anxious mom and I have anxious children. Yay!

Ellen 3:12
And I think sometimes it’s hard to recognize, at least for me, it was hard to recognize that it was anxiety and not just that I was too worried or I was too nervous, but actual anxiety.

Dr. Liz 3:28
Anxiety is not just worry about a one or two things. It’s anxiety about lots of things. If you have generalized anxiety, it’s specific to social situations. If you have social anxiety, there’s certain phobias, there’s a breakdown of lots of different anxiety disorders as per the DSM. And you know, we can all look them up and that’s grand, but bottom line is, it’s not just being a little worried. It really consumes you and is a part of your everyday functioning, it interferes, or it plays a very big role in how you interpret situations, how you perceive situations, how you relate them back to you and your experience and your sense of self. So it’s not just, you know, “I’m a little worried, or I’m stressed about this upcoming test.” It’s, “I’m worried about all tests and my grade and how this grade is going to impact my future.” And anxiety is pretty pervasive, I guess, to really sum it up. It’s pervasive worry. Sometimes it’s specific to a one thing or lots of things, but it interferes with functioning every day.

Ellen 4:39
And maybe that’s what’s good to point out, that it does interfere with functioning.

Dr. Liz 4:44
Right.

Ellen 4:46
So this is going to be a little bit of a different podcast just because we did get questions from listeners who are really interested about this topic and it’s the one people have been really excited to have someone, a professional like you, come and talk about. So one of the first questions that came in was, what is the difference between stress and anxiety? Which I think it’s a great question because for parents of kids with disabilities, we do live with a little bit extra stress because we have to fight schools, and insurance, and all these other things. So how would you differentiate between you’re experiencing severe or, you know, a big amount of stress, as opposed to you’re actually dealing with anxiety?

Dr. Liz 5:34
I think anxiety is the underlying source of a lot of stress. When you talk to someone who is not anxious, and I’d love to meet that person and really shake their hand, and when we do, we’re all going to extract their DNA and eat it or something, I’m not sure. But for a lot of people who are not necessarily anxious, they will have a stressor. They’ll get through the stress and then they experienced some relief. I think anxiety is like an underlying, you know, source of distress because of the perception that certain things that we can’t do them, that they’re going to be dangerous, that we’re worried about bad things happening. So if the average person starts at a level one, the anxious person starts at a level 15. And then when you add stressful situations, it escalates it to a very high level. The other thing I was just saying — this to a mom I was talking to this morning — is that when you’re anxious, your perception of life is that it’s something I have to be ready for. I have to prepare, or I have to know what’s coming my way and anxiety lies, it tells us a lot of lies. And so we interpret situations as being that much more stressful. So we know we started a 15 when your stress added a real stressor. And now it’s going up to very large numbers that I’d rather not quote, ya know, and it’s, it’s consuming, and physiologically, we also produce just a lot of that anxious response, that cortisol that we’re pumping through our system. You know, that perceived lion. Back in the cave days, the caveman days where you really had to shoot up all that cortisol or else you would have been eaten. Right, so now our lions are perceived lions, they’re implying that sometimes, that we create out of our own worries. And I’m not saying that we create them. Usually you have a history, something has happened that’s traumatic or you’ve had experiences in your life. You’ve heard about something in your life, or something has genuinely happened that causes you to be anxious and worried about your family members, whether it’s a child, your children with special needs, whether it’s a death in the family, whether it’s traumatic experiences, and the list can go on and on. But that experience, that physiological experience, also leads to just an immense amount of exhaustion.

Ellen 8:16
Right. And I think about parents of kids with disabilities or parents who have kids who are medically fragile, especially for those of us who start those days in a hospital, because maybe there’s concerns about our kids before there’s a diagnosis. I wonder how much that beginning and the anxiety, the real anxiety that that creates, how that carries into our parenting of that child because we’ve had to be worried. There were real concerns, and maybe we carry that into the future.

Dr. Liz 8:53
We absolutely carry that into the future. And we think, “Remember when I had a hunch and it was right? I have a hunch again, maybe I’m again, you know maybe there’s something more maybe there’s a brain tumor maybe there’s a this, maybe there was this diagnosis,” and so we may get very good at the what ifs and there could bes and the shoulds. But yeah, I don’t think that you have an experience, you let it go and then you know, you start magically on the clean slate. I think the anxious brain also is very good at remembering and remembering all the traumas and the surprises and the shocks.

Ellen 9:28
Yeah, so what does anxiety look like or what can it look like?

Dr. Liz 9:35
So if you’re looking at children, children don’t come in and say, “I’m feeling anxious.” Children show a lot of agitation, restlessness, tantrums, they cry, they want to avoid. When my daughter was going into kindergarten, she’s now in fifth grade, and even though I do this for a living, I didn’t recognize that what she was expressing was an immense amount of anxiety about this big transition and going into school. She was fine in preschool. She was a bit of a leader, she dressed however she wanted, she would wear ballerina tutus and whatever and no issue. We go to kindergarten, now she doesn’t want to wear this stuff, she doesn’t want to stand out. And what I was seeing as she was crying every morning, she didn’t want to do homework. She didn’t want to do activities. She had meltdowns about everything, you know, and things that were once enjoyable were no longer enjoyable to her. And I just was like thinking she needs more limits, she needs more consequences. And, you know, I couldn’t have been more wrong. And it’s really not one of my finest parenting moments, to have been so blind to the fact that she was really expressing anxiety. But as I said, kids don’t walk in and they’re like, they’re not wringing their hands and pacing and aware of having a heightened cortisol response, like they don’t say these things. So it’s up to us to know what that is. And I think when it comes to adolescence, it’s the worry, you know, the worry about stressing over the next test, or can I do well, I’m worried that I’m not going to do well on this test and then what that’s going to mean for me, you know, in middle school or high school or college. I remember being in a high school and thinking — I was so great at this — if I don’t do well on this one test, I will fail this class. If I fail this class, I will have a poor GPA. If I have a poor GPA, I will not get into a good college. I mean, this train could go on for days, but it ended up with I was going to be homeless. So yeah, right. And when I’m sitting here with you know, in my office talking to other adolescents, like this one grade is not going to shape your future, this one algebra one test grade does not have the ability to impact your future career, health, and wellness. And when you talk about it like that, you’re like, “Oh, yeah, because there are multiple grades.” So it’s really bringing it down. And looking at this one thing. So it’s, it’s ferocious.

Ellen 12:19
It is. And I know for me personally, oftentimes it’s irrational, right? You talked about kids being agitated. For me, anxiety sometimes manifests as anger, and I just get angry with everybody. And when I stop to think about it, I don’t know why I’m angry.

Dr. Liz 12:42
Because you’re scared. Because you have an idea in your head about something and that made you scared. And so there’s two ways you can go when you feel scared. You can shut down and cry, or you get angry. And I think over time, we’ve learned that anger is a very powerful emotion that makes people stop, listen, and sometimes go away. So someone is putting a big demand.

Ellen 13:08
Yeah. I mean, it doesn’t make me feel good about myself. Then I feel like I yelled at my kids, I didn’t need to yell at my kids. I yelled at my husband and he was just asking me a question, right? And I’m just like, “Stop bothering me. Don’t you see I’m busy?” You know, whatever my response is. I mean, that’s one way. Also, for me personally, I have irrational thoughts. Like you, I go to the worst case scenario about all things and I have a child with a physical disability. And even last night, I was thinking we have a split home, a split foyer. So there’s not a lot of stairs, but there’s some stairs, which are not super accessible for someone with a physical disability. And I’m sitting there thinking, “What if she falls down?” And I can stop thinking about this image of her falling down the stairs and getting very hurt. And she’s not in the stairs, she’s sleeping, she’s in her room! But I can’t let go of that thought, because it’s a reality, sometimes she falls.

Dr. Liz 14:15
I mean, you’re talking about those obsessive loops that we can sometimes get into. And I hear that, I hear it, I feel it. I know exactly what you’re talking about. And it just becomes this… repeating it again and again. And that anxious brain is very good at those loops, playing the same scenario over and over and over again, until either, one, you’re exhausted, or two, you come up with a viable solution that feels like, “Okay, that’s good. If I do this, then you know, I’ve handled that situation.” But it’s very, very common to get into these loops and that’s when it’s helpful to stop and really talk to someone else and even to just write it down in a journal. I’m a big fan of writing it down in a journal. What are you thinking? Write it all down. Because sometimes when you write it down, you can see how irrational it is. You know, when I wrote down that my one algebra grade was going to lead to homelessness, I was able to look through and be like, “That’s pretty rational.” So

Ellen 15:20
When I ask parents of kids with disabilities what is one of their biggest fears, for a lot of us, it’s what happens to my kids when I’m gone. So for me, if I have a headache, I think I have a brain tumor. If I have a stomach ache, I have stomach cancer. If my neck is hurting, maybe I’m going to get an aneurysm or a stroke. And I go to the worst case scenario.

Dr. Liz 15:54
And I think it’s helpful to really, again, as much as you can, either speak it out or write it. Because when you write it, or can see it, or speak it to someone else, you do realize it is irrational, and what are the chances that this headache is a brain tumor and that I’m going to die today? You know, and it’s a lot of rationalization a lot of positive self-talk, you know, in those moments where you’re like, “I can’t, I can’t do it.” All right, as moms of kids with special needs, especially our to do list is pretty long, and being able to say, “Okay, what is the thing? What are the things that I’m trying to get done? Is this a realistic list?” You know, and are these realistic expectations? And learning to do this… it’s hard, it’s learning to be kind and to be compassionate with yourself the same way you are with everyone else.

Ellen 16:45
Which is harder to do with ourselves.

Dr. Liz 16:50
Yeah. Very hard, very hard. I’m very understanding and forgiving of everybody else. When it comes to myself. It’s, it’s hard.

Ellen 16:56
Well, it’s the same as taking care of ourselves, right? We put our kids first and we will go to any therapy, will go to any specialists. But when it comes to us, it’s always the bottom. We’re always at the bottom of that care.

Dr. Liz 17:11
Yeah, absolutely. And that’s when we need to make ourselves more of a priority. It doesn’t mean you’re going to go and get a massage every day. But maybe you do incorporate a spa or massage every month, or some downtime where you’re sitting for an hour. You know, just maybe putting zero demands on yourself. But that self-care is really important because without it then we’re good for nothing. We’re, you know, if we can’t, if we’re burnt out, we can’t help anybody else.

Ellen 17:40
So let me ask you about something that I just thought right now. So this is not part of the original questions that people sent. But I often say that my outside reflects what I’m feeling on the inside. So if you walk into my home and you look around, you can say, Ellen’s in a good place or not in a good place. Right? And which is why I actually have a system of routines that, just when a crisis comes, we have a plan, we know what we’re supposed to do. But that doesn’t mean that everything is going well all the time. And I feel like that also reflects perhaps, my level of anxiety, if I’m very anxious, you’re going to see it. And sometimes I’m not even aware of it. But is that something that you see? Or am I making this up?

Dr. Liz 18:35
Oh, absolutely not. If you’re experiencing it, it’s real. And it’s valid. You know, I think that’s another thing we ask ourselves a lot as moms and you know, as moms who have kids with special needs is like, is this normal? Is this making too big of a deal? You know, other people have it worse. But I think it’s learning to understand this is stressful. Today is a stressful day for me. And I’m going to go through my routine but I’m also going to maybe lessen my to do list, or I am going to give myself a little extra time to, you know, at the end of the night, I’m going to give myself an extra little bit of time to decompress. Or maybe during the day, I’ll stop and have a cup of tea and stop for 30 minutes so I can decompress. I can regroup, and kind of think about what else it is that I need to get done. What’s realistic, what’s visionary and won’t happen today? You know, because I think we also hold ourselves to very high standards that we have to be all these things to all these people and we have to get these things done. I should. There’s a lot of shifts in our vocabulary, and in our thinking. And yeah, I think the other piece that I know for me personally, is when my environment around me gets scattered, it overwhelms me even more. I need to have things kind of cleared away or in their space because — and I don’t know how valid the research is — but some research has been put out there saying that having too much visual input is overstimulating and it can increase our anxiety. So it’s more to look at, it’s more to process. So I believe that I do too. Yeah, I totally do. Because I know when I walk into my kitchen and there’s stuff all over the place, I’m like, this is too much for me to process.

Ellen 20:21
What is a normal experience of anxiety? What does the average person may experience and when do you know that your anxiety has become a problem?

Dr. Liz 20:33
So to answer your first question, I don’t know what normal anxiety is, I don’t know. Because I think everybody has such a unique experience of it. And I don’t generally say like, this is the standard. I don’t know what the standard is. I just know that high anxiety exists in my life. And I know that we treat a lot of people with anxiety. You know that it’s a problem when you can’t function, when your child can’t function, your child can’t go to school or you can’t do your job or you can’t sleep, or you’re having a hard time, you know, relating to other people. When it begins to interfere with your ability to function, that’s when you know that the level of anxiety is now at a very high level, and something has to change.

Ellen 21:26
It was several years ago, when one of our kids was going through a really difficult time. And as you know, trauma affects everybody in the family. So if you have a child with a high level of anxiety, it’s possible that as a parent, you’re going to have a high level of anxiety. And there was a period of time that I was having anxiety attacks every night and I just couldn’t sleep, or I would fall asleep and I would wake up with certainty that I was going to die in that moment. Because that’s where my anxiety would go, and then I couldn’t fall back asleep and I was tired. Like you said, I wasn’t functioning. I was so angry all the time. There were so many feelings that I couldn’t even focus on one because I was feeling so much. And I remember waking up one morning telling my husband, “I need help. I can’t keep going like this, something needs to change. So I am going to go see my doctor.” And thankfully, he was very supportive. And it was a humbling experience for me because I felt like I should be able to handle it on my own. And it was the first time that I’ve recognized that. I mean, I did know that I was someone with anxiety, but I recognized I needed to get this official diagnosis and I needed to get help, whatever that help was going to look like. And it was a turning point because like you said, I couldn’t function.

Dr. Liz 22:57
And that’s when you know something needs to change. You know, whether it’s medication, whether it’s therapy, whether it’s changing routines or changing the amount of time that you’re caring for your children. You know, getting extra help, taking breaks each day, something has to change. Because I think also this idea that I should be able to do it on my own you, when you’re a strong person, you’ve gotten through a lot. And so you think, well, if I can help my children and I can help others, why the heck can’t I help myself? Because we’re not wired to do that. You know, sometimes we can, but sometimes we can’t. And we also come from, I think, our generation, I’m thinking of like my mother’s generation, nobody talked about mental health. My mother’s primary way of processing emotions was physiologically, so she had a lot of aches and pains and she had more aches and pains when she’s upset, or she was sad or anxious or whatever about stuff. And so we come from that generation of, well, nobody talks about mental health. Fortunately you know, we’re raising a generation now where that is very much a part of our conversation, we talk about our feelings, we talk about how we’re feeling distressed and we problem solve as opposed to, you know, I got a lot of guilt, just get over it. Just work through it. Just stop it. Stop being anxious.

Ellen 24:23
That’s really not how that works.

Dr. Liz 24:26
Okay, I’m gonna go turn off that switch now. Right away. It does not work that way. So I think there’s a lot of components you know, when you are a strong willed human being who’s been at you’ve been able to get through a lot you feel like well, I should be able to do this on my own and, and listen, there’s no prize at the end. You’re not going to get a certificate, or a trophy that says, you know, you didn’t get help and you didn’t take the rest that you needed and you didn’t modify your expectations. So look at this, you get a trophy, like even if there is a trophy, which I don’t know who’s giving this trophy. But even if there is a trophy, do we really want it?

Ellen 25:06
Right. And I think it’s humbling. I remember talking to a counselor one time, and we were talking about anxiety issues and just what was happening in life, what I was going through, and she said, you’re used to being the person who helps others, but right now you are needy. And I looked at her and I said, “I don’t like that. I don’t like the word. I don’t want to be needy.” And he said, “I don’t think anybody wants to be needy, but I think it will be good for you to recognize that you are needy right now. And because you need to focus on you. You need to stop focusing on other people as well and kind of make yourself a priority because you’re needy.” And I still don’t like the concept of being needy because of what we have probably made it right in our culture and society, but recognizing that I was needy was freeing for me, in a way, because it gave me permission to say, “Okay, what do I need to do them to take care of me?”

Dr. Liz 26:08
Yeah, being needy has a negative connotation. It means that, when you think about it, it suggests that you’re weak, and you can’t. And there’s nothing wrong with having moments where you can’t, and that you are weak, because we’re not meant to, as caretakers, have this abundance of energy and it’s just not normal. It doesn’t exist, you know, even back, you know, the whole concept of it takes a village. Right? It takes a village to raise children, and we’re raising children now, without a village and we’re doing it very much on our own and our lives are much more complicated. As moms we’re working, we have careers that we want and should have, but we’re also having that much more demand, we’re much more involved. And yet we’re still doing it alone. And generations past, they didn’t do it alone. You know, when a mom was overwhelmed, she gave her children to another mom or a bunch of other moms, they took a break. They had ach other.

Ellen 27:28
Yeah, honestly, that’s part of why we moved back to Minnesota, because my family’s here. And I thought, you know, I want my kids to grow up close to grandparents and to their aunts, but also to have that little bit more support, and I’m Mexican, so it’s a different culture, but absolutely. The support that I have from my family, it’s not something that I necessarily see other people having. And it’s something that I didn’t necessarily have before.

Dr. Liz 27:57
Family support, social support, is very, very important. We’re not meant to live in these, like individual isolated little circles, you know, our circles are supposed to overlap. Right? Our communities are supposed to overlap.

Ellen 28:16
Right? And unfortunately not everybody has that. So one of the questions that came in was, “If I have anxiety, does that mean that I have to see a mental health counselor or take meds?” And the reason I bring it up is because my husband and I joke about that a counselor is a friend that you pay, your paid friend, and my husband is a mental health counselor, so he gets to sit with people and listen to people and help people and he loves his job and he is so good, but he can’t be my counselor, because he is my husband. But I know for me, personally, when I got to the point of saying, “I can’t manage this on my own, and I need to go see my doctor,” I did talk about medication. And I have done intensive counseling sessions where you do a lot of counseling in a couple of weeks because you just need that space to talk to someone and to process what’s happening and what’s going on. So I’m a big fan of that and having those supports for me, that made a difference. But is that a reality for everyone? Or would you say, if you have anxiety, it does mean that you have to see a mental health counselor or take meds?

Dr. Liz 29:33
I don’t believe in those absolutes at all. I think every single case is very individual. Right? For some people meds are absolutely necessary because they’re at a state where their anxiety is so high, that therapy can’t even work. They can’t even hear what therapy is, what it entails. So sometimes taking that medication, physiologically coming down so that you can receive the therapy. I don’t believe in therapy without the medication, or excuse me, medication without the therapy, just taking medication on its own. Yes, it will reduce the physiological response, but you still haven’t processed the sources of your anxiety. Again, it’s such an individual experience, so it’s not like, if anxiety, then medication, if anxiety, medication and therapy, like it doesn’t work for me that way. It’s a very individual, it depends on how much, how distressed you are and how much that anxiety is impacting negative, negatively impacting your ability to function.

Ellen 30:41
And also with the understanding that even if someone needs those things, it doesn’t mean that they need them forever.

Dr. Liz 30:49
No, no, not at all. You know, I always say if I’m working with someone, I don’t bring them in to work with them forever and ever, because then that suggests that I’m not doing my job, right? The goal is to help you to find symptom relief. And I have a couple of people who stay in the practice because they want to, you know, and we just spread out the frequency in which we meet. So we’re not meeting weekly, we’re meeting bi weekly or every three weeks, and they come less and less frequently as they feel less and less anxious.

Ellen 31:24
So for someone who is not to the point where maybe they need that immediate help with medication or with counseling, what are skills that they can learn or strategies so that they can manage their anxiety better?

Dr. Liz 31:42
So I’m a big fan of exercising, exercising because we pump so much cortisol in our bodies when you’re anxious. You need to have an outlet and you need to pump the endorphins to counteract cortisol. Otherwise you start to experience illness, you start to experience that fatigue, gastric distress, you’re not sleeping, and there’s a phase of what I call, “you’re tired, but wired.” So I feel like exercise is a really big, important part, getting enough sleep, taking enough downtime each day, because I think, and I’m in New Jersey, so I don’t know if this is the case where you are as well. But in New Jersey, our motto is, let’s see how fast you can get from point A to point B, right? And we’re just going, going, going all the time, let’s see how much we can squeeze in, you know, and it’s like it becomes this race. And I see it happening with our kids too. We’ve over scheduled them, they know too much, they have access to too much. And we don’t have enough downtime. And we’re not meant as humans to do this. You know, we’re kind of like rushing, I don’t know where the heck we’re going. We’re all going to burn out. So making sure that you build in time to recoup, maybe if it’s not once a day, then at least once a week, once every couple of days depending on your temperament. Like I know my daughter, she needs a lot of downtime. So she can’t be over scheduled. I can go for a long time. But once a week, I need to sit down and either take a nap, or I need to do something leisurely. Whether it’s, you know, catching up on “Grey’s Anatomy” with my son, you know, that kind of a thing that after I feel rested, even though I haven’t slept per se. And the other thing that I know is very important is sleep. Finding a regular sleep schedule, going to sleep at the same time every night and waking up the same time every day. It’s just self-care. And being compassionate and understanding that if today is a rough day, you’re not going to get through that big to do list. That’s okay. So not coming down on yourself when you don’t get a chance to do it all. And as moms that have children with special needs, we’re so good at bashing ourselves at the end of the day. I didn’t get to do that. If I had done this instead of this, if I hadn’t taken a break… you needed a break, take a break. Whatever it is you wait, it can wait till the next day, if it has a time crunch, see if someone else can do it for you.

Ellen 34:13
I’m really glad that you say that because I feel like sometimes we do need permission for someone to say it’s okay for you to take care of you.

Dr. Liz 34:24
It is okay.

Ellen
Especially if you’re really stressed out to say, “Tomorrow, we’re not going anywhere and I’m canceling all the therapies and I’m canceling all the appointments.” Now, of course, if it’s something very important and medically necessary, that’s separate, but if it’s just for therapies or appointments or even a class, if it’s like a dance class or something, it’s okay to say, “We’re not going to do anything tomorrow. We’re just going to be home and wear pajamas all day.”

Dr. Liz 34:57
Good job. Those are my favorite and I have three children. I have a 13-year-old son, a 10-year-old daughter and a 6-year-old son. And my 6-year-old son, if he could he would live in his pajamas, and he’s been that way from day one. Now he comes home, he takes off his clothes and puts his pajamas almost right away.

Ellen 35:17
That’s me.

Dr. Liz 35:18
I’m like, you’re a definitely my kid. Because if I could, I’d been pajamas all day. Just to me Saturdays, and, you know, I try not to schedule really any activities because I feel like Saturday is my sacred day. Like, that’s the day I sit in my pajamas and I stay in them for a really long time. And then around noon, if I’m up to it, I’m going to maybe brush my teeth.

Ellen 35:46
I like that plan. Actually my oldest daughter told me the other day and we were at Target and I said, “Oh, look at those pajamas.” She was like, “Mom, more pajamas. How many pajamas do you need?” I said the softer they are the better, and I don’t have this one pair of pajamas… but we didn’t get them. So here’s another question that came in, and it’s kind of the piece of faith and anxiety. So somebody’s asking that when they talk about anxiety they’re told to pray more and read your Bible, and they were saying it’s so frustrating. And as a side note, when I go to speak a different places and I recently went to speak to Fargo, North Dakota to a special needs moms retreat, I had someone messaged me ahead of time and she said, “What are you going to talk about? Because if you’re going to tell me to pray more, and read my Bible, I’m not coming because I’m tired of that message.” And then this came through as a question as well. So maybe addressing that piece of how, for people who have faith, how does that piece fit into the larger conversation of anxiety.

Dr. Liz 37:03
I think faith is an important part of it if it’s an important part of your life, you should absolutely use it. Use it for your sense of foundation, for your sense of peace, but I don’t think it’s an anxiety remedy. You know, when I go to church and I listened to the service, I love that I’m just there doing that, doing one thing, I’m not multitasking, I’m listening to words that I feel like are nourishing my soul. And it’s like a nice form of meditation. But it’s very hard to say, I think it’s unfair to say to people, if you’re anxious, you need to pray more. You need to write, read the Bible more, you need to go to church more. I think, you know, those are all good coping resources, but I think you need to really understand the source of your anxiety, that it won’t make it go away. I think it’s a nice resource to use to manage anxiety, but I think that would be an unfair statement. And I grew up in a born again, Christian home, so I understand, I see religion taken to the extreme. When I was younger, my father was diagnosed with cancer and, you know, thank God my father didn’t suspend medical treatment, but the idea was, we need to pray more, we need to go to church more, we need to have more Bible studies, and I appreciate and respect that, but I think we also have other sources of support. So I you know, and I think it also, from what I’ve heard, and experienced myself is that, you know, this idea that if you’re anxious that you’re not a strong enough believer, you’re not doing something right, which can be very shameful, can bring a lot of shame, and that’s something I grew up with. You know, the fact that my father ultimately passed from cancer and for years — I didn’t realize this until later on in my own therapy — was that this idea that I didn’t believe hard enough, and didn’t pray enough, there was something that I didn’t meet well enough in terms of faith, and there’s an immense amount of shame and guilt. And that, you know, I had to let that go. I had to let that go. And so I absolutely respect religion and spirituality, and it’s very much an active part of my life and my children’s lives, but I think it would be unfair to say, well, then you need to do more, because it then suggests that you’re not doing more, that there’s an internal or inherent sense of weakness. And I don’t think that’s right.

Ellen 39:42
And I think it’s fair to say that the religious world still has a lot to understand about mental illness. And it has a lot to understand about the messages we communicate because I think you’re right, you have someone who is hearing those messages and they think nobody could be praying more than me. For this not to be an issue, nobody could be believing more than me that this could possibly go away. And it doesn’t. So for all the things that we could wrestle with, am I not a strong believer? I’m not, am I doing something wrong? And that’s why it’s so important to say, No, you’re not doing anything wrong. And like you said, you can use your beliefs and your trust in God if that’s part of your life to manage it, maybe to find a little bit of peace, but that doesn’t mean that maybe you don’t need to go and see a counselor or that you don’t need to be doing things that are going to make your anxiety better. And really to understand that anxiety if you do have clinical anxiety. It’s not going to go away. It’s going to be part of your life.

Dr. Liz 40:54
Right. And I feel like if you have the predisposition for it, if you are an anxious person, you absolutely can lower your anxiety, you can find more compassionate ways to interpret situations in compassionate ways to treat yourself and the messages, we give ourselves a lot of messages, you know, and you can find more compassion for yourself. That’s not to say that there aren’t going to be times where anxiety is going to heightened again, once you understand what’s triggering your anxiety, the thoughts and emotions you have behind it, and finding ways to cope. I think, you know, you move forward, understanding that this is a moment of high anxiety, because it’s being triggered by something very real or imagined. It doesn’t matter, it doesn’t have to be real. And that it will eventually come down, but it’s something you’re going to experience and it’s going to be a part of your life.

Ellen 42:00
Before we go, I know that there’s a parent who’s really struggling with anxiety right now listening to this. So what is a message that you would have for that anxious mom or anxious dad who has kids with disabilities? What would you want them to keep in mind?

Dr. Liz 42:17
I think it’s important to acknowledge and respect that you’re anxious, that some of your anxieties are real. Some of them are based on your own fears and worries and that as parents, we have a lot of them. You know, that basket of worries for a parent and especially a parent of children with special needs is, it’s big, it’s real, and it’s okay. And really, I encourage you that if you are truly struggling to find support, it’s okay to find support, whether it’s in the form of a group, if it’s in the form of individual therapy, whether it’s in the form of medication, really process the sources of your anxiety because bringing awareness is key to them. And a lot of it has to do with our own parenting and our own messages that we internalize as children and now we’re bringing to the table. And I think a lot of the times, you know, thinking about those irrational ideas is that, especially when it comes to faith is that you did something as a parent that was sinful or wrong or bad, and therefore you’ve been punished with a child with special needs. And that’s a very powerful message.

Ellen 43:29
It’s not even biblical.

Dr. Liz 43:32
It’s not, but unfortunately, a lot of people go there, again, because faith is this thing that you can’t see. So it’s very easy to go to someone and say add more faith, more prayer, more belief, more this, more that. And I feel that, you know, again, I grew up with this, so this is very, very real for me, you know, and then believing that our God is not a punishing God and not a mean God. He doesn’t bring these things to us because we did something wrong. I think we have to understand that, process it, make sense of it and learn how to incorporate it into our life. That it’s okay to have bad days. It’s okay. If you need help. It’s okay if you need to shut down for a day or two days or a week. Okay? It’s really, practice that self-forgiveness, that flexibility and that compassion that we are so willing to give to everybody else now directed towards yourself.

Ellen 44:35
Yep, self-compassion.

Ellen 44:38
Well, thank you so much for joining us today. Dr. Liz.

Dr. Liz 44:42
Yes, my pleasure. Thank you for having me.

Ellen 44:46
I hope you enjoyed this interview with Dr. Liz Matheis as much as I did. And like I mentioned before, she created four different handouts. She created the anxiety checklist for adults, the anxiety checklist for kids, self-care strategies for adults, and strategies for anxiety management for your child. So how can you get your hands on these four great resources? Well, you get those by becoming a patron or a supporter. How do you do that? You can go to ellenstumbo.com and click on the supporters tab, or you can go directly to Patreon, patreon.com/ellenstumbo. So all the patrons of the podcast and my website, you get all these perks and one of the biggest perks is that you get a resource to accompany every single podcast. My goal is to create and offer you resources that are going to be helpful to you as you parent kids with disabilities. So head on over to the website to become a supporter. And you can also visit Dr. Liz Matheis on her website, psychedconsult.com. Have a great week.

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