30 days of gratitude: summer 2023 edition

 

I'm going to start up another round of daily gratitude posts!  This is an exercise I've done not quite annually, but I find it helpful every time I do it.  Now that we homeschool, summer is the best time to commit to a daily writing project, so I'm doing the gratitude posts as a summer vacation exercise!  Since summer also includes many days and weeks out of the house, my goal is to complete one of these every couple days and complete the list of 30 by the end of summer.  As always, I would love for people to follow along on their own or by message - the full list I will use is posted above.

Day 1:  About my Body

I'm going to be liberal with modifying the topic this time around - for today, I'm going to write something I'm grateful for about the human body.  Today, June 15th, is an anniversary for two of Josh's surgeries.  Twelve years ago he had a jaw distraction, and six years ago, he had a hernia repair.  The jaw distraction was a much bigger deal - there were days in the PICU, morphine for the pain, and a very involved healing process.  So where's the gratitude in this?  It's amazing to watch how the human body is designed to heal, even from a fairly major invasion.  Surgeries involve cuts on the outside and more cuts and procedures on the inside when everything goes exactly right - and our bodies are designed to withstand this invasion and repair.  Josh's big jaw surgery is premised on the fact that the body will heal:  when there is a cut in the bone, the bone repairs itself by growing more bone - what a thing!  Think of the difference in our quantity and quality of life if our bodies couldn't heal from most cuts, many sicknesses, and even some major medical events.  As I write this, I'm aware of so many in my life who are struggling through their own or a loved one's chronic sickness, pain, and disability, and I want to be sensitive to the pain of this and how this post might be tone deaf.  For those, I'm sorry and that I would love to pray for you.

Reno Tahoe Odyssey

My RTO team, "Emergency Landing"

This weekend, I completed my first Reno Tahoe Odyssey ("RTO")! The RTO is a 12 person relay race in which you travel 178 miles from Reno, up through the mountains and around Lake Tahoe, down to Carson City, up to Virginia City, and end up back down in Reno.  All of this takes around 30 hours from start to finish.  The experience is kind of like an endurance race, a road trip, a camping trip, and a quest rolled into one.   I'm going to write up the play by play to give you an idea what it's like.

A Day(s) at the RTO:

9:15 am - My team met at the starting line in downtown Reno to send off the first runner, then my half of the group ("Van 2") went back to a house to decorate and load up our van, as our team's legs didn't start until the afternoon.  For those who have run races before, it feels strange to wake up all psyched to run a race and then have most of the day ahead of you before you actually start running.  After lunch, our van set off.

2:30 pm - This is when Van 2's first active section began.  When your van is on, you are either running, driving, navigating, cheering, getting ready to run, or recovering from running.  Each active section lasts for around 5 hours.  

4:30 pm - Because I was runner #10 out of 12, this is when I ran my first leg.  I ran my first 5 miles through Squaw Valley, along the Truckee River and up in the mountains near Tahoe.  This has got to be one of the most beautiful places in the entire world and it felt amazing to be out running in such a beautiful spot.  Your legs are still fresh on the first leg and you feel happy to be alive and up in Tahoe and part of it all.  The first run also helps get the nerves out and makes you feel like things are really underway.

5:20 pm - I finished my first leg and realized that I was sweaty and there was no place to shower and I would be sitting in a van with people for the next dozens of hours - so you figure out how to get cleaned up on the fly with baby wipes.  Everyone brings several changes of clothes to stay clean and deal with the changing weather.  There is also not time to stop and eat restaurant food, so you bring what you want to eat in the car - lots of nutrition bars, fruit, bagels with peanut butter - that kind of thing.  

7:30 pm - My van all finished their first legs, and we drove on to try to find a place to nap until our next round of running.  The sun was setting over Emerald Bay at this point, and the moon was huge, and we got to drive around a stunning vista as we made our way to the next exchange point at South Lake Tahoe.  We stopped in a strip mall in town and laid out our sleeping bags on some grass to try to sleep for a couple hours.  Everyone walking by had comments and jokes, and many thought it was funny to tell us the sprinklers were about to go off.  At one point, someone in a jeep drove back and forth blasting ice cream truck music, presumably to mock us?  Not a lot of sleep happening.   At 11: 15, we roll up the sleeping bags and hit the road again.

1:30 am - My turn to run my second leg, which was 6 miles in Genoa.  Everyone has at least one middle of the night run, which is what causes many of us (definitely myself included) to pause before signing up for this race.  It sounds exhausting and scary and a little crazy.  But actually, this was my favorite leg, because it's so unlike any run I've ever done before: out under the huge night sky, feeling small under the stars, feeling a little mad from sleep deprivation, enjoying the bluegrass music and the peaceful highway and the cows mooing at 2 am.  The air is so nice and cool.  I never would've guessed it, but the middle of the night run is a highlight of this race.

3:45 am - My van finished their second active portion and drove on to Virginia City for 3 more attempted hours of sleep.  We found a parking lot and laid out our sleeping bags there.  Still not super comfortable, but it was much quieter than the last napping spot, and we were more exhausted after 11 miles of running.  Got some actual sleep here, then woke for the sunrise and final active portion.  

8:30 am - My final run was 5 miles in the suburbs of South Reno.  At this point, everyone is sleep deprived and has put at least 10 challenging miles on their legs, and the sun is coming back up and the heat is rising.  This is the Let's-See-What-You're-Made-Of leg.  The one and only thing that's fun about it is that you have to rise to the challenge of making it through - and that IS actually super fun, especially that moment where you tag the next runner and see that you've done the thing you weren't sure you could do.

11:50 pm - Finish line!  All twelve runners back together to run the last few steps through the arch together, then photos and hugs.  Then home for showers and food and sleep!

(pic) Questions I Had Before the Race:

• How does this compare to a half marathon?  This really depends on which runner you are.  My legs were pretty flat, and although it was 16 combined miles, they were broken up so much that it felt easier.  I had wondered if sitting around in a van would make our legs get stiff and sore, but the extra time to rest and stretch and fuel / hydrate was more of a help than a hindrance.  If you had one of the really challenging legs with huge uphills and downhills, I imagine the answer might be different.
• Would I enjoy this if I'm not a runner?  There is a lot more to this race than just the running part - the team aspect, the celebratory feel of all the exchange points, the puzzle of figuring out where you're going next and when to get there and when and how to sleep - but at the heart of it is still running.  To do this race right, you should train similar to preparing for a half marathon with hills, which is a lot of running.  And if you don't train, this is going to be a super hard and painful experience.  You don't have to "be" a runner (whatever that means), but you should pose as one for the months leading up to it if you want this race to be enjoyable.  
• That's a lot of time with people - would I like this if I'm an introvert?  I'm an introvert, as were many in my van.  It's not a bunch of draining small talk.  It's more like being on a mission together and figuring things out as you go, which I think can be fun for introverts and extroverts alike, and when you're not busy doing that, you're trying to grab some sleep.  
• How do you feel the next day?  A little sore.  A lot tired.  Extremely happy that you did it and get to have the memory of this amazing experience forever.

If this sounds fun at all, you should do it!  Shout out to our captain Megan, for putting together a great team to run and travel with!

Homeschooling Kids with Special Learning Needs

Class photo 2022-23

We are completing our first year of homeschool!   I wrote a blog at the beginning of the year about what I hoped homeschool would be, and I'm happy to say that it worked out well for our family.  Some days were challenging, other days were magical, and many days had moments of both.  I could go on and on about the experience as a whole, and it's entirely possible that sometime this summer I will - but for today's blog, I want to focus on what I particularly liked about being able to homeschool a student with special learning needs.  

(I also want to do a quick caveat that I know homeschooling is not an option for many, and is not the choice that many would make for all sorts of reasons, and I'm not trying to be the homeschool evangelist here - I'm just reflecting on our year.)

Here's what we liked:  

• Teaching right at the student's level and going right at the student's pace - This is one of the primary advantages of getting to homeschool any student, but it's particularly pronounced for students with a disability as they get older.  There are subjects where they might be many grade levels behind, in part or in whole, and trying to fit them in the box of their grade level, no matter how many accommodations and tutoring minutes are given, is just going to result in frustration for all involved.  Math is a prime example - one thing builds on another, and if there is not a solid knowledge of the basics, it doesn't make sense to keep rolling on to more complex equations.  What makes much more sense it to keep working on the basics for however long is needed to really get it, and then build from there.  
• Separating out reading and writing from other learning - In 3rd grade, classrooms transition from the focus being on students learning to read, to students reading to learn - so teachers will build reading into other subjects like social studies and science.  For proficient readers, this makes sense, as it's an additional way to build reading and writing skills while you learn your other subjects - but for students with dyslexia or other reading / writing / language disorders, it's a barrier to learning anything, as the struggle to read at grade level will also cause them to miss the content in these other subjects.  In homeschool, we do work on reading and writing every day, focusing on those things specifically.  But for all the other subjects, I do a read aloud and then we talk about it, so the energy can go into understanding content, and not on trying to decode.  (Bonus: this method works great for schooling multiple ages together.)
• Shortening the day up - We are usually able to get school done in 3-4 hours.  That means every day has some down time built in, even though we are often going back out in the afternoon and evening for therapies, sports, and youth group.  I've seen such a positive difference in mood and energy when there is a solid 1-2 hours to play and imagine between school and whatever comes next in the day.  I've also seen really good participation and effort when the school subjects are done in shorter bursts and the school day as a whole is shorter.  
• Can set up a sensory environment that works well for the student - There's no loud halls or cafeteria smell.  There's a trampoline break available between every subject.  Snacks are always available.  In nice weather months, we do some subjects outside.  
•  Can set up socializing in a way that works best for your student - We've joined a couple homeschool social groups, and I've seen an amazing positive difference in socializing.  Some of my hypothesized reasons: 1) homeschool groups are multi-age, so kids are already used to playing with group that incorporates toddlers through older kids, with a wide variety of wild and free personalities, so nobody feels like an odd duck; 2) Parents are around - I've never seen a kid needing to be corrected for being unkind to my kid, but if it was needed, it would happen; and 3) Play usually happens outdoors, in chunks of a couple hours at a time, and for all kids this just seems to give more time and freedom to loosen up and bond.
• No IEP meetings, no standardized testing, no procedural hoops - No explanation needed.

So those are things I really appreciated that are specific to homeschooling kids with special learning needs.  We plan to continue homeschooling, and I would be happy to chat with anyone about any of this.  In the meantime -- hurray for summer break!

Snow and Spring

 

As has been well reported, the Sierra Nevadas got a historic snowfall this year.  Mountain ski resorts got around 600 inches (50 feet) this year.  That's about four times as much as usual!  Reno got a much milder version, but we also had WAY more snow than usual.  And it didn't come in huge storms, but rather a few inches at a time more days than not through the first three months of the year.  

We desert dwellers are not used to this kind of precipitation, cloud cover, lack of sunshine, and having to make plans around the weather for months at a time.  For some, this caused property damage, power outages, and inability to work.  Our family was fortunate not to have any big problems, though we did have memorable moments - one being that our church couldn't meet at its regular location due to snow, so instead we met at a pizza parlor (and the kids will forever remember the pizza brunch and arcade games that followed).  But we are all very, very ready to be done with the snow and back to the reliable sunshine that we know and love.  

Now that winter weather appears to be drawing to a close, I want to write 4 good things that came out of the epic snowfall this year:

1.  First, a fun one - ample opportunity for snow fun.  Last year, it didn't snow a single time in January or February.  There were zero snow angels, snowmen, snowball fights, castles built out of icicles, night time snow walks, or sledding.  This year, we had an abundance of all these activities on pretty much any day that it was convenient.  Skiing has been great, and will go into late spring.  Lots of good snow memories were made for all of us this year.  

2.  Water helps persistent drought.  This is maybe the most obvious benefit to the population at large: we badly, badly needed this precipitation.  We've been in drought for years, and many of us have prayed for more water, relief from wildfires, and things like that.  This year's snowfall and seeing my own ungrateful response as the snowy days just kept coming reminds me of the story of the Israelites who providentially get manna from heaven - food they desperately needed - and then they get tired of it and start complaining because they would prefer some variety, something tastier.  It's easier to say on the other side of winter, but what a blessing to get all this water, and also it's good for me to see how easily my heart can turn to complaint.  

3.  In all kinds of crazy weather, we remember how small we are and that we are not in control.  I grew up in Nebraska, where we get spring storms of epic proportion.  The towering wall clouds that roll in over the plains produce everything from softball sized hail to F-5 tornadoes to lightning storms where the thunder shakes the frame of your house.  It's exciting and sometimes terrifying, and it reminds me how small I am.  A snowpack of dozens of feet along the side of a mountain highway, or an avalanche tearing down a mountain, has a similar effect - it reminds me that I am not the one in control, I am not the one who controls the wind and the waves - and in this, I can be reminded of the one who does control it all, and be in awe.   

4.  We celebrate the world coming back to life in spring.  The relentless precipitation has produced a deep sense of longing.  Every year, it's great to hit the point where you get longer hours of light, where you can feel the warmth of the sunshine on your face, and where you start to see the flowers bloom.  But especially this year, where the natural world has been hidden away by a snow cover for the first quarter of the year and where we've felt extra cooped up inside, the transition into blooming and green and warmth feels even more like *celebration*.  Hurray for new life, for the world made new, for beauty all around.  As they say, absence makes the heart grow fonder:  I appreciate all the signs of spring more when they've felt so gone this winter.  

Cheers to spring!

A Place where Shadows Give way to the Real, and Circumstances Can't Change the Way that I Feel

This is going to be one of the blog posts where I take different ideas that have been floating around in my head and try to weave them together - sometimes that works and sometimes it doesn't - here we go!  The theme, in brief, is trying to think more about the things that matter using Christian meditation.

As I write this, we are right in the heart of Lent.  My church doesn't practice Lent the way that many liturgical churches do, but I once learned that idea that Lent is a spring cleaning: a time to take inventory of things that we want to keep and things that we want to get rid of, in order to make space for God.  So I do try to spend a little time in these weeks thinking about what could I change in my time and thought patterns (both what could I toss out and what could I add in) that would make more room for God.  And there's a song that has given me inspiration in this year's spring cleaning - it's a Christian hip hop song called, "Take Me There" by Trip Lee.  (Some of you may not have known that Christian hip hop is a thing - I linked to the song so you can get your first taste of it :).  The line I've been thinking about a lot, which describes heaven, says, "A place where shadows give way to the real, and circumstances can't change the way that I feel." 

First, let's look at "a place where shadows give way to the real".  There's so much in this world that is fake, deceptive, and all about appearances - these shadows are everywhere, and they obscure the light for all of us.  How beautiful, and how rare, is it to befriend someone that gets more authentic, more deep, more lovely the more you get to know them?  (None of us will be 100% this way, but there are people who stand out as being more like this.)  They put a ton of thought into the things that matter and hardly any thought into the things that don't.  They follow the instruction of Philippians 4:8:  "Finally, brothers, whatever is true, whatever is honorable, whatever is just, whatever is pure, whatever is lovely, whatever is commendable, if there is any excellence, if there is anything worthy of praise, think about these things."  I want to know these people, and I want to BE this person.  But how do you get to be that person, living in this world with shadows everywhere?  

The second part of the line is "circumstances can't change the way that I feel".  Our culture urges us to follow our heart, which usually means follow your feelings.  You see this message on t-shirts and in memes, and it sounds pretty great at first.  The problem with feelings is, they go up and down - they don't always steer you the right way - they are enormously affected by your circumstances.  And it's hard to sort out how much you're being ruled by circumstances when you're right in the middle of things.  It never feels like my heart is being influenced by things like sleep deprivation, stress, hunger, illness, hormones; it never feels like advertisements influence me; it never feels like I'm being anything but rational when I follow my heart.  But if I look back from the distance of years, it's much easier to see that circumstances have hugely changed the way I felt about all sorts of things.  The Bible affirms that we shouldn't just follow the ups and downs of our feelings - Jeremiah 17:9 says:  "The heart is deceitful above all things, and desperately sick; who can understand it?"  I want to be the person whose feelings are not ruled by circumstances, but who can attach my heart and its feelings to a sure and steady hope outside of myself.  But again comes the question, how do you get to be that person?

Both of these things don't just happen.  They are counter cultural, and counter to what comes easily.  So how do we get there?  One practice that I think will be helpful is Christian meditation.  My pastor recently gave a talk on meditation, and he explained that it works well as the bridge between Bible reading and prayer.  After you've taken in some ideas from Scripture, you take time to think about it, digest it, let it sink in, dwell in it.  Find the pieces of reading that cause you to be astounded by God.  And then taking the time to think about it and let it sink in is going to change how you pray, and with regular practice, change the kind of person you are.  If you're dwelling on the things above more deeply and more often, it would hugely affect your ability to see the things that are real, to care about the things that matter and not care about the things that don't.  And it would also sharpen your focus on the hope we have outside of this life, which would cause your feelings to be less battered about the difficult circumstances we all go through in this world.  

So my goal going forward to is to spend more time in meditation.  I would love to hear from those of you who regularly meditate about how you do it and the effects you have seen.  

On Your Team

This week in February brings both Super Bowl Sunday and Valentine's Day!  So I thought I'd write about something that brings them both together:  loving someone well means to be on their team.  (This post will go towards a faith conclusion.)

Who does this apply to?

It's for all the kinds of love!  Romantic love, familial love, friendship, church body - anybody you're in committed, loving relationship with.

What does it mean to be on someone's team?

It means you're moving towards the same end goal together, and that their good and your good is bound up together.  It means you're cheering for them in strength and helping them up  in weakness.  It means you have their back.  It means you celebrate together and suffer together.  It means when you make a play, you're thinking about how that's going to work for the greater good of the whole team and not just how it's going to make you look awesome.  It means you as an individual are working hard at whatever your role is so that the team can thrive.  And hopefully, it means you will have lots of fun times and friendship built along the way.  These principles make for a strong team, and they also make for a strong and lasting relationship.

(I did a whole blog post on team sports awhile ago because they are my favorite.)

That's pretty straightforward?  

It makes sense intellectually, and it's the ideal to strive towards, but it's so hard to put into practice.  I'm not especially good at any of this, and I'm writing this post to preach it to myself as much as anyone.  It's hard to be selfless and put others first, especially those I'm around the most (and those are the ones I love the very most). 

And then add to this, the inevitable bumps of life, like:  the adolescent who doesn't want to be on your team.  The relative who feels different about politics and this drives a wedge in your relationship.  The friend who is going through a season where they're always too busy.  When you and your partner disagree on something important.  (These examples were easy to think of because these have all been me.)

So we have the goal of being a good teammate, and then we have the challenges internally and externally to making this goal a reality.

So how do we overcome these challenges?

1. We can ask God to help us.  This is always a good first step when we face a task that's too big for us.

2. We can remember the incredible grace and forgiveness and unconditional love we've been shown, and be humbled at the much smaller ask that's being made of us towards the relationships in our life.   

3.  We can look to a future when relationships will be perfected.  It won't always be a struggle to put others first, and we won't always be dealing with brokenness in ourselves, our loved ones, and the world.  Someday this will all be easier, and we can be encouraged looking to that future.

Happy Valentines Day to all, and sending love to those of you reading this who are my real life loved ones!  Thanks for being on my team!  

****

Caveat:  I've said this before and I'll surely say it again - one of the hard things about writing a blog is that you never know exactly who will end up reading it.  So I want to be sure to say that I'm not writing this to condone situations of abuse, and I'm not writing this to condemn situations where relationships have already broken.  Sending nothing but love, not advice, in those cases.  

4q: what i wish i wouldve known

My blog mostly gets views when I post something new - otherwise, it stays pretty quiet.  The one exception to this - the one post that gets views every single month since I posted it years ago, that gets searched from all over the world, is my post about 4q deletion syndrome.  I assume people find it because 4q is very rare, so this blog post is one of the few search responses that come up.  

So I'm writing a new post for that audience - if you are the parent of a child with 4q deletion syndrome, and you made it to this blog looking for information, here are some of the things I wish I would have known from the start of our journey.  I'm not a doctor, just a parent, so any medical questions should be taken to a doctor.  And I'm an American, so many of the things about health care and education might be different in different countries - but hopefully there are some ideas here that can help you.

My son Josh is currently 12 years old.  Here's his medical story; here's a description of the memoir, written by his dad, about what the first few years were like from the parent's perspective; here's the post about what it was like when we got his genetic diagnosis; and here's how he's doing now.  And here are some of the things we've learned along the way:

First things to do when you get a genetic diagnosis:

1. Check out the Unique website.  They have a section called "free disorder guides" that is by far the most helpful compilation of information I've seen about the various genetic diagnoses.  You will want to know your child's exact diagnosis to find the guide that is most helpful to you.  In 4q, you will want to know if your child's deletion is interstitial (in the middle of the chromosome) or distal / terminal (at the end of the chromosome), and also how big the deletion is.  These things will help you figure out which guide to get, and which parts apply to your child.  (It will also help many of your specialist doctors to know the exact diagnosis, as they research questions.)  
2. Look up 4q deletion syndrome support groups on Facebook: this one and this one are both really good.  These groups are private, and the parents have a wealth of knowledge about all kinds of things related to 4q.  They are also an excellent source of emotional support, especially in those early days.  I would not know a single other parent of a 4q child without these groups, and now, thanks to these groups, I am connected to hundreds.
3. Find a really good pediatrician.  You will likely be dealing with many doctors and therapists in the early days, and the pediatrician is the doctor who knows the whole medical situation and will know where to refer you as different problems arise, and who keeps track of all of it as things move along.  They will also be the easiest office to get into quickly and the easiest doctor to get on the phone same day.  Find someone who is knowledgeable, kind / encouraging, and great at processing referrals and prescriptions and all the paperwork.
4. If you child is ages 0-3 and you live in America, contact your local Early Intervention office and request an evaluation.  This program provides free in home speech therapy, occupational therapy, and physical therapy to children who qualify.  Therapies are SO effective in these younger years, this is a good thing to tackle right away.  If your child is over age 3, then consider getting evaluated through the school system or by private speech and occupational therapists, as therapy will likely remain an important support through much of childhood.  
5. Again on Facebook - check to see if there is a local special needs group.  This is the best place to get feedback on different local doctors, schools, therapies, adaptive programs - all things pertaining to the world of disabilities.  It's also a good place for emotional support.  

Things to know if your baby is born with Pierre Robin Sequence and / or uses a feeding tube:

1.  If you have concerns about breathing, don't wait - take it to the doctor right away.  Ask about a sleep study. 
2.  If you have concerns about your baby aspirating while eating, same thing - go to a doctor right away, and ask for a swallow study.  
3. If your child's jaw needs surgical intervention and they are offering the choice between jaw distraction and tongue lip adhesion, I would strongly suggest doing the jaw distraction.  I would also strongly suggest that it's worth traveling if they feel that this would be the best intervention for your child, but they can't do it at your local hospital.
4. If doctors anticipate that your child will need a feeding tube for more than a couple months, it is a good idea to get a G-button rather than an NG tube as soon as possible.  This will make life easier for you and will help prevent oral aversion.  

Our son Josh had a feeding tube for five years - here's a post about what I wish I would have known from the start, here's a link to a great website with tons of information about feeding tubes, and here is his story of weaning from the feeding tube.

Things to know related to doctors:

1.  If it's possible to see most of your doctors within one hospital system, do this.  The more doctors can see each other's electronic notes, the better overall picture each of them will have about the health of your child.  This isn't always possible - we live in a location where most of our doctors do not electronically file share, and where we have to go out of state for some of the care - in this case, do your best to keep all the paperwork and to write down the important things from appointments, so you can communicate it to other doctors.  

2.  Know that specialist doctors are great at their practice area, but often are not thinking about the rest of the medical picture.  So, for example, if one doctor wants to prescribe a medication that will suppress your child's appetite, and another doctor is trying to help you increase eating so that you can wean your child from a feeding tube, it will be up to you to communicate to each doctor that these things are working against each other, and it will probably also be up to you to decide which piece takes the priority.  

3.  Keep paperwork from doctor's appointments, not just to share with other doctors, but because you will need some of it in the future to help qualify for insurance coverage, school services, and things like that.  

4.  You will meet some absolutely fantastic doctors - hang on to them, show them gratitude and appreciation, do as many of your visits with them as you can.  And then you will meet some doctors who make you wait hours for appointments every time, who will not get around to looking at the studies they ordered for you until you have called them multiple times, who will not treat you or your child with thoughtfulness or respect - these are signs to look around for a different practice.

Things to know related to school:

• After age 3, many of your child's therapies will be provided through the school system.  Sometimes it's still helpful to supplement this with private therapy if you are able to, such as for feeding therapy and help with sensory needs.  These therapists can be really helpful in teaching you how to work with your child at home, and they can help with a really wide variety of developmental needs.
• If your child qualifies for special education services, all of that will be contracted in a document called the "IEP" - here is a post I wrote about IEPs.  And here is a very helpful website that answers tons of questions about IEPs.
• Like the doctors - some of the IEP team members will be the best humans you've ever met, who would do anything to help your child; but you might meet others who make everything a fight.  If you have trouble getting school services for your child, search for IEP advocates in your area.  You can often get affordable help from a local non-profit.  

Things to know related to health insurance / money:

1. In many states, children with a disability can qualify for Medicaid even if the family would normally be over income.  Google "Katie Beckett Medicaid" and see if your state has this program.  Even for kids with good private health insurance, Medicaid as a secondary insurance can be such a help in covering the deductible / copays.  Also, many private insurances limit their coverage of private speech therapy and occupational therapy, but Medicaid will cover it.  
2. If your baby has special medical equipment such as a trach, oxygen, or a feeding tube, you might be able to qualify for nursing care.  This is worth investigating if you have an adult staying up all night every night to watch the medical situation, or no one is able to babysit for your child because of the medical complexity.  
3. If you need to travel for medical care, there are sometimes nonprofits that help with these costs.  Insurance can sometimes help with costs.  Many children's hospitals have a Ronald McDonald house, which provides rooms at a greatly reduced rate and homecooked meals most nights.  Shriners hospitals provide rides to families traveling from out of town.  It's worth asking around - if your children's hospital has a social worker, they should be a good source of information about this.

Last words of advice and encouragement:

• Listen to your instincts - you know your kid best!  If you feel like something should be checked out with a doctor, or there should be a conversation with the school - follow that intuition!
• Be the squeaky wheel - this is not comfortable for many of us (me included), but if your child needs some kind of accommodation or therapy or medical treatment, don't be afraid to ask, and keep asking until it gets addressed.
• It gets easier!  You will get better at navigating the doctors, the systems, the school meetings, and your child's needs.  Before you know it, you will be giving advice and encouragement to other parents :).  
• Our kids are the absolute best - you will be amazed how, along with the struggles, comes extra reasons for joy and celebration.  
• I wish I could have seen from the very beginning what life would look like at age 12.  You start out in the most intense part, with hospitals and surgeries and countless doctor's appointments.  Now, Josh's life is mostly school and playing outside and Minecraft - it would've been so reassuring to see from the start this happy, thriving 12 year old.   

Thanks for reading!