Josh Updates Summer 2019

It's been awhile since I updated on Josh, so this end of school year seemed like a good time.

Why less updates?

I haven't been sharing as much about what's going on with Josh lately.  If you look back over my blog history, this is a change.  It's partly because "special needs" life has gotten easier - on the medical front, things feel nearly normal.  Most of the dozen+ specialist doctors have downgraded us to "call when needed".  We haven't had many occasions for the ER, and we have had zero surgeries, in the past couple years.  This is all a huge blessing.

But there are still some challenges, and I've hit the brakes on sharing as much about those because as my kids get older, I feel more and more that information about them is theirs to choose to share or not.  (I'm only talking about hitting the brakes on the more heavy and vulnerable stuff; you may have noticed that the light, fun, positive stuff continues to get shared all the time.)   I feel conflicted about this because I also think there's tremendous value in sharing our stories to change hearts and minds, and to make the world a little friendlier and more inclusive to children with disabilities.  This is one of the reasons I shared so much before, and I respect those of you who do share.  Like so many things in parenting, it's hard to know what's the right thing to do and it's very individualized to the specific child and my opinion on this might very well change over time.  I'm still very happy to have private conversations with anyone who is interested or who might be going through similar things.  (And yes, I feel a little ridiculous to have this level of analysis and navel gazing for a small-readership blog that is mostly limited to friends and family.)  So while I sometimes still share very general things, or successes, or prayer requests, I'm planning to be more limited about how I do this on the Internet.

Having said all that, I do want to give shout outs to two things that are continuing to make a big positive difference for Josh and our whole family:  1) therapies and 2) inclusive education.

Therapies

We currently have a combination of speech and occupational therapy going both inside and outside of school, and while there's been many shifts in the details, there's been a combination of therapists working with Josh for his entire life.   This is very typical for kids with a genetic disorder.  There's some sacrifice in this - for me it means extra paperwork and dealing with insurance, for all of us it means we're busier than we would like to be, and especially for Josh, it means putting in extra hard work outside of the school hours and giving up precious down time / play time.  (The therapists are awesome about minimizing the "hassle" aspect of all of this and about making the experience as fun as possible for the kids, which is definitely not the case with all providers.)

Having said that, the benefits of therapy hugely outweigh any hassle.  Because of all this ongoing support, Josh is able to have so many more fun and meaningful life experiences.  He attended VBS for the first time this year and is currently attending a day camp at Lake Tahoe (complete with camp bus - see pic above!), and there are so many things therapists have helped with - oral eating, changing clothes, asking for help, tolerating sensory experiences, the list could go on and on - that make activities like this possible and fun for him.  We can eat out at restaurants.  He can run around and play with other kids.  He can draw incredible pictures and tell elaborate stories to express himself.  He made sweet cards for Mother's and Father's Day.  All these are things he loves (except restaurants, but they are tolerated), and the skills that allow for these things have been helped along by therapists.

Inclusive Education

Inclusive education means that a child with a disability is included in a mainstream classroom as much as possible, and ideally is given the level of support to make this work well for everyone involved - the student, the teacher, and the classmates.  Our kids go to an elementary school where inclusive education is prioritized.  The principal has a PhD in special education and her knowledge and support of special education students flows down and is embraced by the rest of the staff.  (This is our zoned, public elementary school and while we did do some asking around when figuring out which school zone to move into and followed our teacher friends' advice about which school was the most special ed friendly, we largely lucked into this good situation.)  School hasn't been without bumps, and there's hard work going on by everyone, particularly the general education teachers and Josh.  The teachers are having to come up with creative solutions to challenges, having to communicate exponentially more with parents and other team members, and are dealing with all kinds of extra scheduling and logistics and paperwork.  Josh is working hard to meet the extra social, practical, and academic demands of a mainstream classroom.  Inclusive education is not easy, it's not cheap, it's not the path of least resistance, but it's so incredibly valuable. Here are just some of the possible benefits of inclusion:

• Students with disabilities are given the best chance to learn by having maximum access to the regular curriculum (because many times students are able to take in much more than they can communicate back out);
• Students with disabilities are encouraged to act independently as much as they are able, which builds towards the goal of independent adulthood, which means investing in students with disabilities while they're young can save society money in the long term;  
• All students have the chance to be kind and including, which benefits both those on the margins who are being included and those with plenty of friends who are being includers; 
• All students have opportunities to interact with those who are different from themselves and broaden their lens of what's possible.  This might sound like a warm, fuzzy, meaningless sentiment, but it's really not.  One friendship in grade school may influence who you decide to hire, how you run your church, who you befriend as an adult, how you vote, and how you conduct yourself with neighbors and co-workers and everyone else you encounter in the world. 

We are so grateful that our school makes inclusive education a priority.  And all those valuable life experiences listed above - VBS and camp, friendships, increasing ability to write and draw and express himself - the inclusive school experience definitely also contributes to the ability to participate in and enjoy life.

So in summary, things are going well for J, and we owe a lot of that to our therapists and school.  And now we are all glad to be enjoying summer!

Reno's Biggest Little Half Marathon

Sweet, sweet finish line

 This last weekend, I ran Reno's Biggest Little Half Marathon.  I've written a couple posts about running before, but going through another training cycle always produces fresh inspiration, so here we go!

Why do a half marathon?

There are a ton of reasons one might have to do this race - here are my top 3:

1.  I've been pregnant or nursing for approximately 7 of the last 9 years, so i fancied this training and race as a declaration of bodily independence.  Kind of a funny way to do it, since a dramatic uptick in exercise makes you tired and sore a lot of the time, makes you think carefully about your eating and drinking and sleeping, and especially towards the end, you plan your entire schedule and slate of activities around it - sounds quite a lot like being pregnant, no?

2.  I wanted to use this race as a way to get back in shape.  I've been telling friends throughout these training months that I'm not a runner, but it's more accurate to say that I'm a former athlete who really ratcheted down the intensity of workouts during my baby years.  Doing a half marathon makes me feel like a legit runner again.  Not the best, not the most consistent, not the mentally toughest - but a runner nonetheless.  And it feels good to be back in the saddle.

My girls dressed "sporty" the morning of the run

3.  I wanted to take the opportunity to role model strength and healthy living for my kids, and particularly for my daughters.  They're all young, but they actually really noticed that I was running more.  Before my weekend long runs, they would sometimes ask to join me and then start running laps around the living room to demonstrate that they could do it.  About 6 weeks into the training, when I was seriously contemplating quitting, Zoey told me that she thought I was so brave and strong for running such a long race, and that was more than enough motivation to keep going for the remaining 6 weeks. 

How was the training?

My training this time around was not as intense as it could've been (i followed this training plan, but with slightly longer long runs at the end).  I chose a minimal miles training plan, and I sprinkled my longer runs with walking breaks.  My goal was just to make it across the finish line, not to achieve a particular time goal.  (Though i would still love to break 2 hours sometime in my life - putting it out there now.) 

I chose the take it (relatively) easy training approach partly because i was not in great shape going into this, but mostly because I wanted this to fit into the rest of our family's life as much as possible.  Kenny did generously give me more hours on the weekend to get in long runs, but I wanted to have enough reserves of energy outside of the actual running minutes to attend to all the other activities of life - kid birthday parties and trampoline parks and hikes, homework and occupational therapy and baths, cooking and laundry and dishes - all the things. 

That said, even with the take-it-easy approach, training for a  half marathon is hard work.  Especially in that last month, you're putting in a full effort.  It feels really good to work hard and accomplish a discrete task, and then it's a relief to knock the mileage back down when you're done.  (Although it also feels a little aimless once the race is over - anyone else feel this way?)

Nevada-shaped finisher's medal

How was the race?

Here are some things to know about the Biggest Little Half Marathon if you're considering running it in the future:

• It's small (this year, there were 336 finishers).  The pros of this are that you can easily find friends who are running it, the course is never over-crowded, and it would theoretically be easier to place.  The cons are that it feels like much less of a whole community event than the races with thousands of runners and there is virtually no crowd support other than the aid stations and sweet family members who come to cheer you on.  
• It's an out and back and it's combined with a 5K and 10K, so this means at various points you will have people blazing by you (but you will also probably get the chance to blaze by other people yourself).  
• It's hilly right in the middle, especially miles 8-9.  I specifically avoided running hills during my long training runs and that was a mistake.
• Reno is at altitude - if you live and train here, that won't be an issue, but if you're coming from out of town, be aware that we're almost a mile high.
• It's a beautiful course - mountain and Truckee River views some of the way, along a lake for another part, through scenic neighborhoods, and starting and ending at the iconic downtown arch - they chose a very pleasant route (other than those darn hills!).  
• It's very well run - lots of aid stations, started on time, lots of good support at the finish, and a sweet finisher's medal. 

Congrats to all those of you who are also training for or just finished half marathons of your own!  What's your favorite half marathon you've ever run and why? 

Bringing People Meals

One way to show kindness to people going through a busy or hard time is to bring them a meal.  This can feel intimidating - finding the time, figuring out what to make, arranging the logistics - but it's a good gift that everyone can use.  We've been the beneficiary of dozens of meals (between 3 new babies and hospital stays), thanks to our churches and my MOPS group.  And I've been able to bring meals to some of those same folks, and thereby learned some of the tricks of the trade.  This is a Q&A blog post that attempts to make bringing a meal feel more manageable!

What should I bring for the main dish?

The two meals I would suggest are Chicken Teriyaki and BBQ Chicken.  These suggestions take into account that most people preparing the meals are not going to have unlimited time and money.  These are crockpot meals that can be prepared quickly in the morning and then cook slowly throughout the day.  They are easy to prepare, affordable, and they appeal to most people, including picky eaters and kids.  And they are easy to transport.  [They are not, however, the most amazing gourmet meals that have ever been made.  If you have the ability to make this kind of meal instead, go for it!!]

Casseroles are also always good - things such as lasagna, chicken pot pie, Shepherd's pie - because you can prepare them the night before (or whenever it's convenient for you and then store in your freezer) and then all you have to do is cook.  Or bring them to the recipient with baking instructions.

What should I bring for sides?

You can get really creative with this, but if you don't know the people's dietary preferences well and / or if they have kids, it's probably best to keep it simple.  Some kind of veggie (salad kits are great for this), some kind of bread (pre-made from a bakery works great) / rice / potato / grain, and some kind of dessert (again, store bought is fine).  (And for those times when you're REALLY short on time but longer on money, restaurant take-out is always an option.)

What about when there are special dietary needs?

The Internet has great ideas for almost any special diet needs.  Chili is an excellent, hearty meal that can be tinkered with in a hundred ways and is gluten free, dairy free, egg free, and can be made meat free.  Other types of soups will often work for special diets.  If the special need is gluten free, there are many products available at the grocery store that will be allow your favorite recipes to be modified to gluten free - pasta noodles is where I've used this the most.  These peanut butter cookies are a good, easy, delicious gluten free dessert.  If the special dietary need is more unusual, you can always ask the person what some of their favorite meals are to get ideas flowing.  It can feel like an insurmountable challenge to cook under restrictions that you're not used to, but it's a great chance to be creative and it's *really* not that hard to figure out a plan and follow a new recipe. 

Any other tips?

• When you hit the grocery store, consider buying disposable containers to deliver the food.  This will be easier on the recipient than working out a plan to return containers and ensure you don't lose your favorite containers.  
• Text the person to let them know when you're coming and keep them updated if there's changes to your schedule.  This facilitates the person being home and ready when you deliver the meal, which is good for everyone :).   

And while we're on the topic of recipes, here's one bonus crowd-pleasing, super easy but not low-cal idea for potlucks:

Cheesy Potatoes
Ingredients:
2 lbs frozen hashbrowns (defrosted)
1/2 cup melted butter
1 tspn salt
1/2 tspn pepper
2 T dried onion
1 cup cream of chicken soup
2 cups sour cream
2 cups grated cheddar

Mix all ingredients and put in 9x13 casserole dish.  Bake covered for 1 hour at 350 degrees F.


Bon Appetit!  And please share ideas / recipes / links with your favorite things to bring people!

What is a Strong Woman?

Today is International Womens Day.  Every year, I like to post the saying, "Here's to strong women.  May we be them.  May we know them.  May we raise them."  It's one of those phrases that sounds empowering, but what exactly does it mean to be a strong woman?  I suspect that people's definitions might vary widely.  Here's my definition!  Strong women:

• Feel secure in who they are, which enables them to:
• Support, encourage, befriend, and build up other women (rather than competing, judging, gossiping, and tearing down).
• Support men (because in your strength you won't need to manipulate, play games, or try to gain your worth in relationships).
• Not get their value from comparisons or social media (and conversely, not allow themselves to be torn down by comparisons or social media - and this might mean kicking social media to the curb).  
• Stand up for what they believe in, and stand up for others.  In big and little situations, in person and on the Internet, when no one is watching and when everyone is watching.  
• Work hard and are not easily discouraged.  
• Are not afraid to accomplish, but also are not basing all their worth on accomplishing.  I want my daughters to have every opportunity and I will encourage them to pursue their education and their dreams (and I'm grateful to live in a time where things like NASA scientist and president of the United States are not off the table); but I want them to know that it's okay to fail.  And also, that there is value in *many* different kinds of work (and in particular, that there is tremendous value in caretaking work).  
• Are able to accept constructive criticism, listen, learn - and use all of that to become better.
• Becoming better looks like living out the Fruits of the Spirit more and more:  love, joy, peace, patience, kindness, goodness, faithfulness, gentleness, self-control.

This is a pretty good list of how I'm trying to become strong, and the kind of strength I wish for my daughters.  What would you add to the list?

Happy International Womens Day!

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.

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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!