Self Care for Special Needs Parents

Time for some self-care talk!


I have to be honest - I really don't care for the phrase "self-care" and I like to imagine that I'm too strong and independent to need it, but this is prideful and false.  We all need it.  It can be extra hard for special needs parents to find the time, resources, and childcare to do things like a weekend away - but there are plenty of things that we CAN be doing:

1.  Find your community - Find the other parents who are similarly situated, whatever this means to you.  It's great if you can connect with some people locally - there are sometimes special needs parent support groups through churches and disability related non-profits.  Facebook is also an excellent way to connect with people who live in a different part of the country (or world).  It's really hard to do this journey alone and supportive friends make a big difference.

2.  Lean into your faith - The special needs journey can be very challenging to your faith, but your faith can be a huge source of hope and peace in difficult times.  Remembering to pray, for your community as well as for your own sanity, is so helpful. When we go through struggles, it helps me enormously to take an eternal perspective.

3.  Sense of humor - There are times where inspirational quotes and poems might speak to you, but there will be many many more times where these feel trite and annoying and what you really need is something funny and distracting.  And if you're lucky, your friends from suggestion #1 can help you out with this.

4.  Self care doesn't have to be expensive or time-consuming - Listen to your favorite song on You Tube; go for a walk around the block; spend 10 minutes each day reading a book from the library.  These things are little, but they're like a water station in a marathon - a little thing can keep you going for miles.  (I say this like I've run a marathon; I have not.)

5.  Educate yourself... It's empowering to walk into an IEP meeting and already know your basic rights, or to have already read the draft so you're not being blindsided at the meeting.  If your doctor gives you information about a diagnosis or possible treatments ahead of time, it's helpful to read up a bit so you have some idea what you're dealing with, and again, you're not blindsided.  Knowledge can (sometimes) be self-care.


6.  ...But don't fall too far down the Google rabbit hole.  This is a tip that I am not good at following myself, but it's good to have boundaries around Google.  To watch for the point when you've sunk hours pointlessly, when you're worrying yourself needlessly, when gathering information is no longer helpful and empowering to you and your child but is instead a source of more stress.

6.  As much as possible, work WITH your providers and teachers and therapists.  People get into the helping professions because they want to help, so I think it's good to start with the assumption that you're all on the same team trying to help your child.  If you can be friendly with providers and educators, if you can be mutually supporting each other, it makes appointments and meetings so much better.  (This isn't always possible and there will be difficulties, but that's all the more reason to keep good relations with those who are working hard for your kid.)

7.  When people offer help, say yes.  We've been lucky to have great family support with babysitting, and church support with things like meals.  It can feel awkward to accept help, and even more so to ask for help.  But if you are given the choice, don't carry it all on your own.  And if people give a general offer to help, think of what would actually be most helpful to you - respite?  A meal?  Help with a household chore?  Transporting siblings to their activities?  - and then don't be afraid to name that request.

What would you add to this list?

Books I Read in 2018

This annual post has turned into my favorite blog of the year!  It's a fun chance for me to look back on what I read, and even better, it's a fun chance to give and get recommendations from all my reader friends!  Below is a graphic of the books I read in 2018 (and here's a link where you can click on any of the books to get more information).  My favorites are listed below the picture.

YOUR 2018 BOOKS

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Here are my favorites, listed in random order.

Top 10 Fiction:
"The Great Alone" by Kristin Hannah
"The Leavers" by Lisa Ko
"Everything I Never Told You" by Celeste Ng
"Behold the Dreamers" by Imbolo Imbue
"Station Eleven" by Emily St. John Mendell
"The Power" by Naomi Alderman (this is one you will either love or hate, but it is unforgettable)
"There There" by Tommy Orange
"Beartown" by Fredrik Backman
"The Hate U Give" by Angie Thomas
"A Gentleman in Moscow" by Amor Towles

Top 5 Memoirs:
"Educated" by Tara Westover
"The Long Haul: A Trucker's Tale of Life on the Road" by Finn Murphy
"Hunger" by Roxanne Gay
"Everything Happens for a Reason" by Kate Bowler
"Calypso" by David Sedaris

Top 5 Other Non-fiction:
Liturgy of the Ordinary: Sacred Practices in Everyday Life" by Tish Harrison Warren
"Morning and Evening" by Charles Spurgeon
"The Collected Poems of Emily Dickinson"
"Letters to a Young Poet" by Rainer Marie Rilke
"The Shallows: What the Internet is Doing to our Brain" by Nicholas Carr

**Every year, there's books right on the cusp that I'm sad didn't quite make the top, so I want to add the disclaimer that I quit books quickly if I don't like them, so (most) any book that I finish is a book that I would recommend.**

Besides favorites, I'm going to give a (non-sponsored) pitch for any of you who have made it this far to join Goodreads.  Goodreads is a social media site where you can track and share your reading life, and I think you will find that it improves the quality of your reading life without taking up much time or effort.  Here's the Top 10 reasons why you should join:

1.  It helps you keep track of your own reading life.  Each year, you can look back on the books you read and reminisce (this is how I create this post each year).  It also gives you a place to list books you are currently reading.
2.  You can set annual goals for how many books you would like to read, and if you have any kind of competitive or performative streak, this will motivate you to read more.
3.  It's a good place to keep a running list of books you would like to read in the future.
4.  It's a great place to get recommendations by seeing what your friends read.
5.  Relatedly, it's a fun way to start real life conversations by seeing what your friends read.  (Shout out to Naomi, my sister, and my mom!)
6.  It's a handy place to refer to when someone asks you for a book recommendation and you want to be able to review books you've read recently, or when you're looking for a literary gift for someone.
7.  It's a good place to read reviews for a book.  I find this particularly helpful when I'm on the fence about a book - if you suspect that you won't like it despite good reviews, you can scan through the 1-star reviews and see if those reviewers agree with your (potential) objections; conversely, if you suspect that you will like it despite mediocre reviews, you can scan through 5-star reviews and see if it's exactly your kind of quirky.
8.  Many of the books are on lists (such as "special needs parenting", "best fiction of 2018", etc.) - so if you find one book you like, you can sometimes find similar others by using Goodreads lists.
9.  You can write reviews to let others know about books that make your heart sing, or warn others about books that are the worst.
10.  Because who couldn't use more social media time in their life?  I joke.  The final good thing about Goodreads is that it's very manageable time wise.  I log on about twice a month, for 5-10 minutes at a time, and get all of the benefits listed above, and I would guess that's a very average usage.  It's not addictive and it's not a time suck.

My favorite part of doing this blog post every year is getting all of your recommendations!  You all always help me come up with some of my favorite reads for the upcoming year.  This year, I would especially like recommendations on your favorite non-fiction social justice-themed books, but I would also love to hear about books you loved of any genre.  Happy reading!

Devotional Recommendations

With the New Year approaching quickly, I wanted to put up a blog post with some recommended devotionals that I've read through in the last several years, since this is a good week to put in an order for a new daily devotional book and have it ready to go when the calendar turns over.  There is quite a variety in this little group, so I'll put up a little synopsis and link to more information on each one.  All of them were manageable on a daily basis and helpful to spiritual growth in their own way, but depending on your personality type, you will probably lean more towards one then the others.  (I'm an Enneagram 9, so can meld myself into the type of personality that is able to receive each of these different books, haha!)

"Savor:  Living Abundantly Where you Are, As You Are" by Shauna Niequist

The pros: Shauna Niequist has a wonderful sense of God's abundance, His grand redemptive plan, and the gospel and our lives as an interwoven story. On the days where she chooses these kind of topics, she totally nails it and is SO encouraging. I texted these to my friends more than any other devotional I've read in the last 5 years.

The cons:  There were many days (i would say 20-30% of the book) where it felt like "good advice on living" rather than digging into the Bible or connecting with God. Which would have been fine, if it was marketed as Christian living rather than a devotional. But because it was supposed to be a devotional, I felt frustrated on the days where it felt like it was more about how to be a good hostess rather than how to connect with God. There's nothing unorthodox in here, but some of the days felt off topic.

Other:  The tone of this book is very casual and conversational - I don't consider this to be a pro or con, just extra information for your consideration.  



"The Songs of Jesus:  A Year of Daily Devotions in the Psalms" by Tim Keller

The pros:  The Psalms are such a rich, moving, beautiful book of the Bible, that you could get a TON out of just reading them on their own for a year.  Keller's insights and applications take this already rich book and add to it.  I loved learning more about the wide range of emotions and situations that the Psalms cover. 

The cons:  Tim Keller is my favorite modern Christian author, so it's really hard to find anything bad to say about him.  I felt like sometimes the devotionals were a little heavy on logic and analytics and short on emotion for discussion of such a poetic book of the Bible (though this is a big part of what I enjoy about Keller's style, so it's hypocritical of me to hate on it). 

Other:  Tim Keller also has a devotional on the Proverbs, which is what I'm planning to read for 2019. 

"Jesus Calling:  Enjoying Peace in His Presence" by Sarah Young

The pros:  This is a great book for reminders of all the positive promises Jesus gives us - of things like love, peace, and hope.  This would be a great one to read when you're going through a hard time and you 're seeking comfort and strength through the promises in the Bible. 

The cons:  The style of this book is not my favorite.  It's presented as Jesus writing you letters each day.  This initially rubbed me the wrong way, though I got used to it pretty quickly (and I know others who really enjoy this style). 

Other:  This is the most commercially popular book on this list, at least in recent years.  If you're looking for a book that you can find at any bookstore with a religion section, or a book that you might be able to discuss with others who have also read it, this is probably the best choice. 

"Morning and Evening" by Charles Spurgeon
The pros:  This one is a classic devotional, and for good reason.  It's got tons of good theology, biblical analysis, and practical application packed into one page of text per day.  It's encouraging and inspiring, challenging and thought-provoking, and covers a really wide range of the Christian experience. 

The cons:  This is kind of unfair because there are lots of ways to manage this, but I didn't like how there were 2 devotional readings assigned to each day rather than one.  (The idea being that you would read one in the morning and one in the evening, hence the title.)  I couldn't sustain doing two different reading times each day, and I also couldn't mentally handle reading just one and ignoring the other, so I read both each morning, and consequently felt like I got less out of each day than I would've with a really focused reading of just one.  If I could start over, I would make this a 2-year book and read just one per day.

Other:  This has the most formal language.

What daily devotionals have you read that you loved?  Please recommend in the comments!

Advent post 2018: Already, Not Yet

I love the Advent season.  I love the way it pulls together darkness and light, weariness and new hope, waiting and the fulfillment of promises.  I love the way it acknowledges the difficulties of life, from the daily grind to profound suffering, and it meets us in our struggles and breathes life into the pain. 

The struggle in my life right now is weariness.  There is so much to get done in the running of a household with 3 young kids.  There's so much patience, attention, humor, energy, creativity, and oh yes, food preparation needed each day.  There's also all the special needs stuff.  I love my family dearly and consider my husband and children to be the greatest blessings in my life, but man, I am failing them all the time.  They could all use more and better from me, and I just don't have any more to give.  I don't mean to turn this into a pity party - they all know that they are loved and we have many happy moments.  But I wish I was never short and/or anxious with any of them, never chose to scroll Facebook over giving them my full attention, and never felt too depleted to give any of them my full and best self.  (This is not the highlight reel that I put on social media. :).)

I'm very lucky that these are my struggles right now.  I have a few friends who have lost children this year, others who have lost parents, and others who have lost relationships.  I know the holidays are a fresh reminder of the loss, and my heart goes out to all of you.

I made a promise to myself not to make this post political, but we can all think of situations in our country and in the world where there is gross suffering and injustice.  Advent speaks to these situations as well.

Advent meets our personal pain, and the suffering of the world, with the answer of "already, not yet".

The "already" part we celebrate is that God came to earth as a baby.  This brings hope to all the pain and darkness and difficulty on earth, because it gives us a tangible reason to believe that it won't be like this forever.  Jesus already came down to earth, fulfilled a bunch of historical promises, and lived a life, death, and resurrection that changes everything and gives us hope beyond what we see in the here and now.  We can ground our hope in this "already".

The "not yet" part that we celebrate is that the life we live now, which still has suffering and brokenness and world injustice and our own constant messing up, is not how things will always be.  Part of what we look to during Advent is the second coming of Christ, which is when every tear will be wiped away.  The sadness and diagnoses and losses will end.  I will no longer fall short for the people I love most.  Injustice will be righted.

Whatever you're going through this year, whatever is bringing your heart pain, I hope that the great hope of Advent meets you where you are and brings you hope and light.