Some Disability Related Thoughts: spring 2021 edition

Happy March, everyone!  I've slowed way down on the disability related blog posts, but I have a few thoughts knocking around in my head and they are ready to fly out into the world.  Here is a collection of things that I would love it if everyone heard this perspective (our teachers, therapists, and other nearest and dearest are great about all this stuff - this goes out to the wider world):

1.  Short order cooking is fine.  There is a frequently stated idea that everyone in the family should be eating the same food - this is easier and cheaper for the food preparer, (sometimes) healthier, and (sometimes) will cause the kids to eat a better diversity of foods.  People like to proclaim that they won't be short order cooks, meaning cooking a different meal for different members of the family.  I'm not anti-pushing your kids to eat things that are healthy even if it's not their favorite -I've spent way too many hours of my life doing battles with my kids over eating grapes, and I do usually make my non-orally averse kids try at least a bite of new foods.  But this all-or-nothing short order cook thing fails to acknowledge the reality that many families have a family member who has an allergy, or who has a special diet for all sorts of reasons, or who has a strong food aversion.  And if you insisted on them eating the same as everyone else all the time, they would have a terrible physical / emotional reaction and/or starve.  I would love it if the dialogue around this was much more forgiving:  ie, "It's great if everyone in your family shares the same meal, but fed is best.  Do whatever works best for the health and happiness of your family, and this might very well be short order cooking."  

2.  When kids have a speech or writing disorder, it doesn't mean that they have nothing to say.  It might mean that they need more time to get their words out, or they might need an alternative way to communicate something., but there are often lots of cool ideas floating around in their head, just like with other kids.  Think about how frustrating it would be if you had all the same opinions and funny one liners and observations about the world as you do now, but you weren't given the time or tools to communicate those things?  And think about how great it would be if, after some experiences of not having the time and means to express your thoughts, you are eventually given the right time, tools, and training to communicate, and you blow people away?  If a kid is trying to talk and needs a little extra time to get through their sentence, it is so great when people give them that space and they get to express themselves.  

3.  When kids have trouble with the decoding part of reading, it does not mean they can't understand the content, or that they lack curiosity and eagerness to learn.  This is similar to point #2.  Kids might have trouble sounding out the word on a page, but then talk your ear off about the topic and ask questions at a depth that you can't answer without the help of Google and You Tube combined.  Decoding is an important skill to keep working on at a pace that's comfortable for the child, but there are more and more options for audio / video in both books and Internet content, and this lets kids keep learning when their understanding and curiosity outpaces their ability to read.  But if it's assumed that a kid's knowledge base and eagerness to learn is at exactly the same place as their ability to decode, for struggling readers that's going to be really limiting and frustrating.  (Our school teachers and staff have been AWESOME about separating these things out.)

4.  Whatever type of disability your child has, this does not diminish their worth, beauty, value as a human being, or unique contribution to the world.  I think for most of you reading this blog, this doesn't even need to be said.  But I would love to see this internalized by every maternal fetal specialist, every politician, and every person who makes decisions about who gets hospital care or dollar allocations.  I wish this could be felt and known by every parent who is newly receiving a tough diagnosis about their child.  Your child is amazing and will bring you so much joy and will bring out a part of your heart that you didn't even know existed! 

Parents of children with disabilities, what would you like to say to the world?

Distance Learning in the Time of Corona

Distance learning!  One of the many, many things that none of us expected 2020 to hold!  Here in Reno, we just finished Week 4 and we will complete 5 more weeks this spring before Summer Break starts.  (And then, of course, fall 2020 TBD...)  Since this is something unlike what's ever happened before in our lifetimes and (hopefully!) unlike what will happen anytime following, it seemed worth memorializing with a blog post.  I'll describe how it's being done in Reno, and then what we've liked and what's been hard.  Friends in different districts, please feel free to weigh in with your experiences in the comments.

What do the students do each day?

For elementary age, the kids are expected to do daily reading, writing, social-emotional learning, and math activities - each of these takes about 20-30 minutes - and then there is a checklist of science, social studies, music, and literacy activities that the student completes over the course of the week.  All of this is listed in a paper packet.  It is up to the parents to administer the activities (which is pretty easy if the students are self directed and willing to do it, and pretty challenging and hands on if the students are resistant or needing lots of help and direction).  We are doing work from the packet for about 2-3 hours per day.

Will the homework be turned in or graded?

My understanding is that none of the work for this 4th quarter will be turned in or graded.  My kids are in 2nd and 3rd grade, so for them this matters not at all - it doesn't affect their willingness to do school work, their future college prospects, etc. - but I can see this being a bigger deal for older students.

What is the teacher's role?

The teachers are in lots of communication with the parents, offering help and additional resources.  They are doing one or more Zoom calls with the class per week, which is usually a chance for kids to share some of the work they've been doing and then sometimes an additional activity or read aloud.  I'm sure they are doing tons of other work behind the scenes.

How is special ed being handled?

Our special ed supports are doing an awesome job.  Speech, occupational therapy, counseling, and resource (tutoring) support are all doing Zooms with us at least once a week and also sending additional resources.  Between general ed and special ed, and between two students, we are facilitating about 12 Zoom calls per week, so this lengthens the amount of time spent on home school stuff.  (Which, some days it's helpful to keep them occupied, and other days it's difficult to fit all the Zooms in.)  I thought it would be a big challenge to accommodate the academic work in the paper packet as we went, but the teachers have been helpful with suggestions and flexible with accepting whatever I decide to do.

What have we loved?

• More down time - if the kids get right on task by 9 am and only take short breaks between activities, we are usually done by lunch time.  This leaves plenty of time for getting outside, read alouds, Minecraft, and anything else that's fun for them.  It also allows for breaks in between subjects to jump on the trampoline, play with our dog, etc.
• There is more flexibility to tailor to the kids' interests and abilities.  Josh loves natural disasters, so we use natural disaster books for his reading time, and suddenly he's able to read several levels above what his standardized test scores would indicate.  Zoey wanted to start a newspaper, so I let her do that for her writing time this week.  It's fun to let them run with their passions.  
• It's cool to see the creative ways the teachers and school staff have found to reach out and interact with and teach the students via our various technologies. 
• This one is extremely specific to our family, but -- it's great having Josh home all day e'ryday because I can get food in his hands six times per day, and that's the key to helping him maintain and gain weight, which is an ongoing challenge.

What's been hard?

• Figuring out how to prioritize - there are days that are heavy with Zoom calls, days where a certain assignment takes way longer than anticipated, and days where either me or the kids are just not that motivated to work hard.  I am a big time rule follower, so it's hard for me to just cross things off a checklist with abandon, or to even choose which things to cross off.  (Although it's getting easier as the weeks march on.)
• This is no fault of anyone (except the corornavirus!!) and it's certainly better than no contact, but Zoom calls are just not the same as in person interactions.  The teachers have gotten good at figuring out how to make the most of it with read alouds, directed drawing exercises, sharing time, nature videos, etc., but we are all very limited by this format.   
• The kids miss things about school that I just can't pull off at home and with the current world situation: time with classmates, science days, field day at the end of the year - things like that. 
• Everybody is balancing things that used to be much more separated out - teachers are parenting while teaching, parents are teaching while parenting - it's been a lot for everyone to adjust to, balancing different roles all at the same time.  I'm very lucky that I'm not currently trying to balance a job with everything else, but it's still a juggle.  
• All of us are operating under the corona cloud - fears about sickness and finances, disappointment about things getting cancelled, missing get-togethers with important people in our life - and I think that can't be separated from how we're performing our day-to-day functions.  

As you may have noticed on Facebook, my emotions are fluctuating pretty wildly during this time.  Sometimes, I feel so grateful for this time with my kids.  Sometimes it feels so hard.  Often, it's both feelings at the same time.  I would be very interested to hear how distance learning is going for the rest of you!

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!

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?

Why I Participate in Awareness Days

Example awareness meme, also a plug for a great organization!

If you have been Facebook friends with me for awhile, you may have noticed that I frequently post about special needs awareness days, such as the picture in my profile right now (if you're reading this in the week I post it), or like this meme to the left.  I also post frequently about various things in the special needs world...pictures of our appointments, articles about IEPs, and so much more.  Why?

Part of it, as with all things social media, is for attention.  (I don't mean this accusatorily - I post stuff daily, so whatever finger might be pointing at you the reader with this statement, there are four big fat fingers pointing back at me.)  But sometimes I'd rather not have the attention for this particular thing.  It's always fun to post pictures and get likes from a day at Lake Tahoe, but it's not always fun to draw attention, yet again, to the special needs stuff.  Sometimes it sounds very appealing to fly under the radar with these kinds of things.  Here is why I post about awareness days and doctor's appointments and all the rest of it anyway:

• Education - It helps you know how to support me, and possibly also how to support those close to you who have a loved one with some kind of disability or special needs.  It gives you a picture of what we might be thinking about and how to talk to us.  I *welcome* conversations about the special needs world and I am not easily offended if you don't know the exact words to use :).
• Personal Sharing - When I post about appointments and milestones, it lets you celebrate or mourn with me.  If people want, they can pray for us.  It might give you some insight into why I'm looking extra happy or extra frazzled on a particular day.  There are things about this life that can feel very lonely, and it helps tremendously to be able to share it.  
• "Shine Bright" - when Josh was first born with lots of health difficulties (here's his story)(here's Kenny's excellent book about his story), and then again when he got his genetic diagnosis, it raised lots of questions about what his life was going to be like.  At both of those times, I wish I could've seen into the future how much good is in his life.  He's happy, he gets to do lots of fun and normal stuff, he's learning and growing, he gives and receives love - although there are struggles and extra appointments, it's a good life.  I hope this message reaches a few people who need to hear it - if you get a prenatal diagnosis of a genetic disorder, if your child receives a genetic diagnosis - there is so much beauty and goodness in this life.  (And if it would help you to talk to someone, I would love to be that person.  If you're not ready to talk but want prayers, I would also love to be that person.)  
• For decision makers - If you are on the school board, if you are a leader in your church, if you are a leader in your community or part of your local or state government - I hope you see stories like mine from time to time, and they convince you to put more emphasis on inclusion in schools, on creating a special needs program in your church, on funding a job training program for the developmentally disabled, or anything else that might come up in your area of influence.  
• For voters - As health care and disability issues come up in elections, I hope my Newsfeed gives you a story to connect with as you're thinking about how to vote.  
• For my tribe - If you are part of a special needs subculture, everyone lights it up on awareness days.  My Newsfeed is filled with "Shine Bright" profile pictures this week and it makes me smile to see the faces of fellow 4q kids.  It's like we're all sending our bat signal to each other.  

That's why I do all these special needs posts.  Other special needs parents, what would you add?

Special Needs Parenting and Perspective

There's been a few things on my mind lately, all orbiting around the themes of special needs parenting and perspective.  So I'm going to consolidate it all into one post and we'll see how that goes!

Item One:  Balancing Chill with Vigilance

Here is a key ingredient to both good mental health and a strong faith: you don't spend all your time worrying.  One thing that helps cut down on hours spent worrying is the realization is that you're not in control of most things anyway (and, for people of faith, the belief that God is in control).

Not worrying goes *way* against the grain of my natural personality.  When you add in special needs parenting, you get the added (perverse?) incentive that sometimes worrying DOES pay off in a big way.  The more time you spend discussing ideas with other parents, or pouring over medical journal articles, or checking and checking and checking the Facebook groups, the more you increase the chances that you will find the doctor / medicine / sensory solution / diagnosis / diet / therapy / school support / supplement that will improve or possibly even save your child's life.

But, it also means you will worry needlessly about extra things, both things you have identified and things you worry you might have missed.  My latest round of worry for Joshua was the possibility that he had a blood clotting disorder.  I was worried about this mostly because it's common with his chromosome disorder, but also because he has some trouble with nose bleeds and history of a blood transfusion with surgery.

It would be crazy to get a referral to a specialist to check on hemophilia just because a child living in a dessert climate gets nose bleeds -- you would never do that for a medically typical child.  But the nature of having a child with a rare disorder is that you can expect 1) that unexpected things WILL (sometimes) go wrong, and 2) that the doctors (again, sometimes) will NOT be watching out for these things because they're so unusual.  

When we went in to the hematologist, we discussed a bunch of things about Joshua's medical history, the doctor Googled at least 3 things in front of me, and then at the end of the appointment he thanked me for educating him (about the link between 4q deletions and Hemophilia C, and about the latest treatments for Pierre Robin Sequence) - which is cool, in a way, but it also puts a lot of pressure on special needs parents to know their stuff, because doctors need you to educate them when you're dealing with rare.  

The good news in this anecdote is that J does NOT have any kind of blood clotting disorder!  His labs were normal!  But then this begs the question -- was my worrying worth it?  If he would've tested positive, then it absolutely would have been - but he didn't.  This is the example that we're dealing with this month, but new concerns come up all the time, and it's tricky to know how to handle that in a way that's healthy (for me and for Josh).  I would love thoughts on how others strike this balance between not worrying and watching out for the medical things that doctors might miss.  

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Item Two:  My Lent Challenge, Perspective, and a School Update

I'm doing a Lent challenge with my prayer group to turn complaints into gratitude.  When it comes to Joshua's special needs, I am a complaining machine, so this is the place where the rubber hits the road for me, and the place where it would be most helpful to do the exercise and realize all that I have to be grateful for.  Here we go!

The complaint:  I'm tired of Josh having procedures and blood draws and doctors appointments as a constant part of his life.  I'm tired of the stress it causes him and the worry it causes me.  

The gratitude:  I'm very grateful that Josh does not have a blood clotting disorder.  And I'm grateful for other things that tend to come with his syndrome that he has not had trouble with (such as seizures), and for things he was born with that healed on their own with no surgery (such as his atrial septal defect).  I'm grateful that God has protected him through all his surgeries, and provided medicines and supplements to help with other issues.

The complaint:  I'm tired of school being a struggle.  I feel sad that the chromosome disorder causes learning struggles, and frustrated that since school is designed for a typical student, it often doesn't work perfectly for him.

The gratitude:  I'm grateful that he's at a school where the administration, teachers, and staff value and support students with special needs, even (especially?) as the district is strapped for cash.  I'm grateful that Josh likes his teachers and is making forward progress.  I'm grateful that things are going okay with fellow students.  I'm grateful that everyone on his team knows the things that make him excited and use those things to motivate him.

The complaint:  I'm tired of food still being a battle and still needing to be planned in every situation.

The gratitude:  I'm grateful that we have a wonderful private occupational therapist.  I'm grateful that, after YEARS of spinning our tires with eating, Josh is having a huge burst of willingness to try new foods.

And, in areas that continue to be challenging, I'm grateful that God will someday wipe away every tear and make all things new.

Special Needs Sibling

Today, Zoey got a hearing test at the ENT, and it reminded me of a topic that I've had on the back burner: special needs siblings.

Zoey was extremely excited to have her first ever appointment with a specialist provider.  This is because she's been to hundreds of Joshua's appointments, where her job is to behave and help keep him happy while all the attention and concern is focused on his needs.  As adults, we understand that doctor visits and tests and surgeries and hospitalizations are at best unpleasant and at worst incredibly painful and difficult.  But young children don't understand this - what they do understand is parental time and attention.  To them, this is a huge indicator of love, and they notice when the lion's share of time and attention is going to someone else.  It's easy for me to chalk all this up to "life's not fair", which is a lesson that I do want my kids to learn.  But in the same way that "life's not fair" doesn't usually take such an extreme form in childhood as a feeding tube and a whole host of surgeries and hospitalizations like it has for Joshua, it also doesn't usually take the form of *so* much of the parent's time and attention and the family's schedule being built around addressing a different family member's needs, as it has for Zoey.  (This is less true all the time, but was big time the dynamic when she was a baby and toddler.)

So here are some things I think she's probably learning as the special needs sibling:

• Strength - It's difficult to get a big dose of life's not fair, but it can turn you into a stronger person.  Zoey gets plenty of love and attention from lots of family members - she is by no means a neglected child - but it takes strength for a young child to handle a lot of the family's schedule and attention going to the sibling.  Special needs siblings are strong because they have to be, and sometimes that's a real bummer -- but the strength they develop will benefit them in the long run.
• Flexibility and creativity - Sometimes plans change.  Sometimes it's super boring to be at an appointment for 2 hours where most of it is spent waiting around.  Zoey has developed a hilarious exam room dance, which of course incorporates her trademark camoflauge rope, that keeps all of us entertained until the doctor walks in.  Both of the kids have had to learn creative ways to deal with boredom, which is an increasingly rare skill in our overstimulated world.   
• Compassion and empathy - As Zoey gets older, she understands more and more that it's no fun to be the one getting a shot, or an MRI, or an ER visit.  She is learning to empathize with these difficult experiences.  She has seen that Josh has a different way of eating, that he can get fixated on particular interests, that transitions are extra hard - but he's still her best friend and her favorite playmate.  I'm hoping that as she gets older, this will translate into a greater level of openness, compassion, and empathy towards people who are different from her in all sorts of different ways.  

Special needs siblings don't always get credit for the experience they go through, but their role in the family can turn them into tough cookies, kind friends, and amazing human beings.

(By the way -- the reason Zoey got a hearing test is because she is receiving speech therapy at school and hearing tests are a standard recommendation for a kid who receives speech therapy.  Her hearing tested normal.  I was hesitant to start Zoey in speech because I wasn't sure she needed it and I didn't want to add an activity to our calendar that I would have to drag her to against her will.  I was totally wrong about that second concern.  Zoey (as well as Josh) LOVES therapy.  She loves her therapist, she loves the fun activities they get to do, and she loves the individual attention she receives.  At one point, Zoey said she liked speech therapy as much as she likes going to Lake Tahoe.  I think Zoey's love of therapy is a little bit related to the main content of this post, but it's mostly about the awesome job that the therapists do of making it fun for the kids.  Now she just wants to know when she gets to start occupational therapy, haha.)

My Thoughts on Genetic Editing

In the news this week: scientists have made a major advance towards editing baby's genes in utero in order to prevent genetic diseases.  As someone whose child has a genetic disorder, I have some thoughts on this.

My first instinct is that we shouldn't be messing with genes because:

1.  Can the scientists get it right?  Some of us won't even eat a vegetable that's been genetically modified for fear that messing with the plant's genes is going to cause negative consequences.  (By the way, I'm in favor of genetically modified food, but that's a discussion for a different post.)  If we can't trust scientists to modify our food, then why in the world would we trust them to modify our *babies*?  From the article, it looks like the method they have developed involves cutting out the genes that carry diseases and then hoping that the body grows healthy genes in its place.  I'm no scientist, but that seems to leave some very significant room for error.  And while genetics is getting more advanced all the time, (my understanding is that) the precision with which bodies operate using DNA far outpaces our human understanding of how all this works.  So the pieces of DNA that get cut out could very likely be too big, too small, cutting out some of the essential with some of the faulty, etc.  

2.  What kind of Pandora's Box is this opening?  If you can modify genes to help prevent diseases, you can also modify genes to choose gender, skin color, intelligence - anything about the body.  Are we okay with messing with any of this?  Doesn't this sound a lot like eugenics?  Doesn't this also sound a little Tower of Babel-esque?

3.  Even if it can be limited only to preventing genetic diseases, and can be done 100% correctly, should it be done?

This is the trickiest question, I think.    On one hand:  As a person of faith, I think that God is good and God is sovereign, and that He created this diversity of abilities for a good reason.  I don't fully understand it, but I trust that God knows better than I do, and that there are good reasons for all the beautiful diversity in the world, including genetic diversity.  

On the other hand...I'm glad that I will never have to make this choice about gene editing, because while I do feel like it's a bad idea for all the reasons listed above, it would be excruciating and nearly impossible to decline that choice as the parent, at the beginning of a difficult medical journey.  I love Joshua fiercely, exactly as he is, and I have learned a ton and grown as a person and met some wonderful friends because of his disability -- but despite all that, if someone handed me the "keys to the kingdom" of his DNA that would allow me to fix the missing pieces that have caused all the surgeries, all the medical ups and downs, all the developmental difficulties - it would be so hard not to accept that.  Because the world is built for medically and developmentally typical people, and Joshua's life (especially those first years) would just be easier if he was "typical".  And there are other kids whose genetic condition has impacted them much more severely, including some whose conditions are not compatible with life - when you think about these cases, the analysis doesn't seem so clear cut.  It raises an interesting ethical question about why is this different from other cutting edge medical technology that can prolong life, why is this the appropriate place to draw the line?  Why wouldn't we want to help children have more years of life and less pain?

  As always, I'm interested to hear my friends thoughts, and I ask people to please be gentle and respectful in the comments.  

Josh age 5 health update

I haven't given a Joshua health update in awhile, and the reason is:  he's doing great!  Since moving to Reno, we haven't had any sickness, he's been able to drop a few meds, and he really likes his new preschool / teacher / therapists.  He's adjusting to all our life changes well and he's getting along well with cousins and other friends.  Honestly, this move (both in general and for Josh in particular) is going better than I dared to hope it would.  This blog post has some recent updates at the top and then a more overview type update below.

Recent Updates:

• We took his G-button out last month and it closed in less than 4 hours - isn't the human body amazing?!  This is a great outcome.  Also, he is handling it well psychologically - he doesn't seem to be freaked out that it's gone, he's eating and drinking fine, etc.
• The move to Reno has been great for Joshua's seasonal allergies / asthma, which were getting so bad in Virginia that we weren't able to control them even with a mix of 6 meds, and the next step would have been seeing an allergist.  Because Reno is so dry, we've been able to drop about half those meds and manage things much better, which is a positive quality of life improvement for J.  
• I was a little worried how the school transfer was going to go, since Nevada is a low tax state (great when you're the tax payer, less great when you need government services).  Josh's new school has been great, and I want to give a special shout out to the principal, who seems to approach IEP meetings with the attitude of "what does this kid need to succeed and what can I do to help him get there", rather than starting with the attitude that there are limited resources and only the most dire situations will be reason to loosen the purse strings.  I don't know how she manages the money side of things, but i so appreciate that it feels like we're working together.  
• Our "new" doctors in Reno are actually a mix of mostly his old providers (who are encouraged at how well he's doing now) and a couple new (so far, so good).  The new docs often want to do their own tests for their records (such as hearing tests, VEEG, etc.), so it's taking some extra time and energy to get through this most recent round of doctor visits.  There are a few docs we will eventually need to see in either Vegas, Salt Lake City, or northern California, but fortunately those appointments should occur less than one a year.   
• Josh has a minor urology surgery coming up next week - it's called an inguinal hernia repair.  It's outpatient but under general anesthesia - we would love prayers for no complications and a quick and easy recovery.

Overview Update:
It's got to be a little confusing when I write about how great Josh is doing, or for those of you who see him at church and playdates and family get togethers and in many ways he seems like a "normal" (as in medically and developmentally typical) kid -- but then I also do tons of posts about doctor visits, medical stuff, IEPs, and therapies.  One day he's tearing through the maze at the pumpkin patch, and the next day we're having our Katie Beckett home visit.

So which is it - is he doing great or does he still have a lot going on?

The anwer is:  it's both, at the same time.  (I think many parents of kids with mild to medium affect chromosome disorders would agree with this.)  His scariest and most complicated health issues were all caused by birth defects, and those have been surgically repaired.  His life largely consists of enjoying regular childhood activities like going to the park, playing with friends, etc.  Thanks to the grace of God, really good care from teams of doctors and therapists, and medical interventions like oxygen and the feeding tube and all the surgeries, he's doing really well now.  And while we're very grateful that he is where he is, we still depend on regular help from the doctors and therapists to keep him doing as well as he is.

Why does he still go to doctors so often?

• For the known - Medically, he's got a lot of different things going on.  They are all pretty mild and well managed, thankfully.  We haven't had a hospital admission or ER visit or even so much as a school sick day for several months.  But to keep him healthy, we're checking in with 7 doctors, we're administering medicines and supplements throughout the day, and we're keeping a running list of anything going wrong.  
• For interactions when multiple systems are affected - There are two things to track when lots of systems are affected:
• Figuring out the problem - We notice a problem and have to consult multiple doctors and therapists to figure out what's going on and whether we can fix it.  Often it's more than one thing and nobody's sure exactly what to do, so we try different things until something works or he grows out of it.  (Some examples of this:  getting off the G-tube; falling / balance problems for years when he was learning to walk; looking sideways out of his eyes; severe monthly nausea attacks.)
•  Domino effect - If one problem develops, it can set off a chain of other problems, so doctors are more proactive when Josh gets sick than when medically typical kids get sick.  One example of this -- last year I took both Josh and Zoey in for a sick visit because they both had cough and cold.  It was one of those borderline sicknesses where it's bad enough that you want to get them checked just in case, but you know the doctor is probably not going to do anything.  For Zoey, who was the sicker of the two, that's exactly what happened - they checked her over for 10 seconds and said to call back the next week if she was still sick.  For Josh, presenting with the exact same symptoms of cough and cold, they gave him a nebulizer breathing treatment in the office, a steroid, prescribed an anti-nausea med and a high dose antibiotic, and made a change to his G-tube feeds.  He doesn't get sick too often these days, and he's not nearly as medically fragile as he used to be, but when he does get sick it's just treated differently.  
• For the unknown - With a chromosome disorder, we can expect new health issues to arise more often than for medically typical kids, so we need to do well checks with specialists more often to watch for certain things.  (This is the main reason we currently see neurology and ophthalmology.)

And why all the therapies?

Developmentally, he seems to eventually hit every milestone, but it usually takes extra help (from therapists), extra practice (with us), and just extra time.  Depending on what the skill is and how long it takes to master as compared to normal, this is sometimes a big deal and sometimes a small deal.  (Or, as is often the case, it feels like a big deal when you don't know if / when he's going to master a skill, and then once you see he's going to get it, it instantly turns into a small deal.)  Right now, his skill levels are all over the place -- there's some areas where he's very close to age level (academic skills like knowing his letters, gross motor skills), there's others where there's a significant delay (self-care, fine motor), and then others where it's a medium delay and it's somewhat context specific (speech, social skills).  (And if you're wondering how I know where he's at with all this stuff - it is unreal how often special needs kids get evaluated.  I could probably give you percentiles and paperwork for where he was at in every developmental area for every quarter of his life, starting at birth.)

This part of his care has gotten a lot easier for me now that he's school age and most of his therapies take place at school, but I still spend a chunk of my time communicating with teachers and therapists, trying to figure out if there are toys or activities or therapies or IEP goals that we could add to be helping him more, and figuring out our public and private insurance options to help pay for private therapies.  I wrote awhile back about how important therapists are, and I still can't say enough about how valuable the work of PTs, SLPs, and OTs is.

I write all of this out to give you a better picture of where we are and what Josh's life is like.  As I said above, I think this is a pretty typical situation for kids with mild to medium affect chromosome disorders - the details would be different for every kid, but this is the idea.

The Top 5 Benefit of Children's Hospitals from a Parent's Perspective

Children's hospitals are a popular cause to support, whether it's rounding up your change at the grocery store or writing a six figure check.  (Or a pro-athlete photo op?  But I digress.)  If you're anything like I was six years ago -- meaning, someone who never had a reason to spend time in a children's hospital - you have a generally warm and fuzzy feeling about children's hospitals, but probably have never stopped to think about why they exist, or what benefit they provide that is any different from a regular hospital.  So for those who are curious, I am writing a top 5 post about the benefits of a children's hospital from the perspective of a special needs parent:

1.  Expertise - Joshua's two main diagnoses (4q deletion syndrome and Pierre Robin Sequence) are extremely rare - when we tell them to residents or new doctors, the docs often whip out their Smart phones to give themselves a quick refresher.  For kids with rare conditions or complicated health needs, it is better to be at the place that is a magnet (often for hundreds of miles around) for other kids with these same complicated health needs, because then the doctors will have a much better idea of what's going on and what to do for you.  When Josh was born, the Reno docs decided to fly Josh 500 miles away to a children's hospital for this very reason.  On vacation, when we have occasion to visit an ER or Urgent Care, they almost always ask me why I didn't just take him to the Children's hospital - even when there isn't a children's hospital in the same town.  Both parents and doctors feel better having medically complex kids cared for by pediatric experts, and these docs are usually housed at children's hospitals.

2.  Electonic Doctor note sharing / Teams - When your child has multiple specialist doctors, it really helps if they can see each other's notes and talk face to face about the best way to handle a situation.  For example, it was helpful to have our ENT (who interpreted sleep study results) talk directly to the craniofacial surgeon (who repaired Josh's cleft palate) about how the palate repair would affect Josh's ability to breathe.  It was helpful when multiple surgeries needed to be done around the same time and the doctors could coordinate so we just had one anesthesia and one hospitalization.  When your child's pediatric specialists are not affiliated with a children's hospital, then they often rely on the parents to communicate what's going on with the child - and while special needs parents often become extremely knowledgeable about their child's condition and do an adequate job of filling the different doctors in on developments, we just can't communicate things the same way as two doctors talking directly to each other.

3.  Decor / Child Life -  For Josh, it makes a huge, positive difference in his anxiety level when as much as possible of the hospital sensory experience is designed to be child friendly and soothing.  When the lobby is decorated in child friendly colors, there are cartoon animals painted on the walls in the exam room, there are volunteers playing live music out in the corridor, and there is a train table in the pre-op waiting room.  When the TVs for admitted patients have multiple cartoon channels and the Child Life department has extensive toys and books available for kids of all ages and abilities.  Similarly, it makes a big difference when doctors are willing to take a minute to help make the kid comfortable - introduce themself, let them touch the stethoscope, explain what will happen next - before they dive into the exam.  And it seems like prioritizing the comfort of the kid over absolute maximum efficiency happens more often at children's hospitals than elsewhere.

4.  Convenience - Josh currently sees 7 doctors at least once per year (for those who are wondering:  ophthalmologist, neurologist, ENT, plastic surgeon, GI, pulmonologist, and pediatrician), and a few others from time to time as things come up (geneticist, orthopedist, dermatologist, urologist, developmental pediatrician, and pediatric surgeon).  This means we're going to the doctor dozens of times per year just for well checks.  If all the doctors are housed under the same roof of a children's hospital, I learn pretty quickly where I'm going and how long it will take to get there and what the parking situation is and how long to expect to wait and whether they have a coffee shop, etc.  If the practices are scattered all over town with different staffs and situations in each place, I have to spend a lot of extra time figuring out logistics and leaving buffer time (in case this is the office that runs right on time rather than consistenly an hour behind).

5.  Billing - That long list of doctors above means we run up a bill pretty quickly each time our health insurance year starts over, and children's hospitals do two things that are extremely helpful with this.  First, they consolidate all the expenses into two big bills - one from the hospital itself and one from the doctor's group - this simplifies (see #4) and it also gives them a good picture of your overall health expenses.  Second, they provide extremely generous, zero interest payment plans as you pay back this consolidated bill.  They are not non-profit in name only - they really do prioritize caring for kids and they don't want financial hardship to be a barrier to kids getting the care they need.  (At least that has been our experience with CHKD in Virginia.)

Those are my top 5.  I recognize that some of these are more compelling than others -- the expertise thing matters a whole lot more than the convenience thing -- but at the end of the day, they all matter, so they all make the list.  Friends, what would you add?

G-Button out!

It's official:  Joshua's G-button is out!

A recent picture of Josh that shows his G-button, at Lake Tahoe.  

We saw his GI doctor yesterday and got the "all clear".  The orginial plan was for me to take it out at home last night, where he could be comfortable, but unfortunately we had a button malfunction and I couldn't get it out.  It's kind of funny to spend 5 years doing everything you can to keep the button in, and then when you're finally ready to take it out, it won't budge.  (It's like ray-ee-ain, on your wedding day.)  So there was some frustration and frantic message boarding on my part (trying to figure out what was wrong with the button), and then resignation that we would need to go back in to the doctor's office.  And then, probably thanks to all my fiddling with it the night before, the balloon on the button burst and it came out on its own!  And bonus:  Josh thought he did it, so he's feeling very pleased about the whole situation.  (I thought the button coming out and not being replaced by a new one was going to be a hard moment for him.) Then, as planned, a gauze bandage went on, and we celebrated with cupcakes with green frosting and sprinkles (Josh's request).

Celebration cupcake.

I've done some posts in the past about Joshua's feeding tube, including why he has a feeding tube, what I wish i would've known about the feeding tube from the beginning, how his eating is still very limited, and the excitement when we first found out that we could stop using the feeding tube.  These posts summarize how I feel about the whole situation:  grateful that Josh had the feeding tube while he needed it, and ecstatic that he got to the point where he no longer needed it.  Today I just want to post some pictures to memorialize the whole experience.

Joshua's first week, hooked up to all the machines in the NICU in Salt Lake City.

Christmas baby!  2 months old.  I got to change the NG tube while staying in a VRBO with the family in San Diego.

Love those little baby smiles.  

Big, beautiful eyes.  He still makes this expression with his mouth when he's unsure about something.  

We were living in Virginia Beach for most of Joshua's early life.  60 ML tube feeding syringes make excellent sand toys.  (This is supposed to be the Nebraska state capitol.)

First day post-op after getting a G-button placed, age 4 months.  No more tube coming out of the nose!

Kenny giving Josh a bath around age 6 months.  Plenty of baby fat, thanks to the feeding tube.

Josh was not orally eating by his first birthday, so mom overcompensated by getting him the biggest smash cupcake in all the land to get his hands and face dirty.  

First birthday bath following first birthday smash cupcake.  This is one of my very favorite pics of Joshua.

Lots of doctors visits, tests, and procedures as part of all of this.  Here is Joshua being a good sport during one of his nine sleep studies.

North Carolina, c'mon and raise up, take your shirt off, twist it round your head, spin it like a helicopter.

Lots of new pretend play ideas, too, including being a doctor...

...tube feeding stuffed animals (this bear had his own Mic-Key button - thanks Judy Corliss!)...

...and doing feeding therapy on the stuffed shark..

Josh proudly showing off his G-button, age 2.

All of us got very comfortable doing regular life activities with the button, including the important evening activity of wrestling with dad.  

Eating is still a challenge, but for the last year, Josh has been able to to eat (and drink) enough to keep growing and stay healthy, so now we get to take the tube out!

I do have 2 prayers requests:
1)  For healing of the stoma (that's the empty hole where the G-button used to be) - that there won't be infections, that if he needs surgery (he probably will) that it will be a smooth and uncomplicated process, etc.
2)  For Josh - he's handling it super well right now, but I think there might be some ups and downs this weekend.  Imagine telling a 4 year old that you're taking out their belly button - this is what it feels like to him.  He's had it for as long as he can remember and it seems to him like a body part.  Prayers for his adjustment to no G-button.

Thank you all for prayers and encouragement along the way.  I'll probably do another blog in a few weeks about how it's all going - but for today, signing off and celebrating with cupcakes!

Joshua's Sideways Look

Joshua saw the ophthalmologist on Friday to get a general check-up for 4Q related concerns and to investigate why he frequently looks out the side of his eyes.  Joshua does not have any major eye problems, thankfully, but the doctor did diagnose him with astigmatism, so as of this week, he gets to start wearing glasses (pictured below).  The hope is that glasses will help him look at things at a distance head-on, fall less often, have a better sense of depth perception, and just generally be more comfortable.  He is not a huge fan of the glasses and it's unclear whether they are helping much, so we will see if this is a lasting change.  

[Note added later:  Joshua saw his neurologist in October 2015, and the neurologist believes that he has oculomotor apraxia.  This means that it's sometimes easier for Joshua's brain to process what he sees if he tilts his head or views it by looking sideways (you can see him doing this in all the pictures below).  For now, nothing needs to be done to "treat" this condition - he doesn't need additional therapy or surgery - we should just let him keep looking sideways / head tilting since that seems to be most comfortable.]

   In any case, the main reason I did a whole blog post to announce that Joshua is getting glasses is because I wanted an excuse to post a gallery of some of the pictures we have of Joshua doing his most classic expression - the sideways look.  Here they are:

With stuffed Buster, checking out real Buster on the couch.  

At Autumn's 2014 summer tea party - here he's playing hide and seek, "hiding" behind the plant.  Photo credit to Hope Hepner.

At the Virginia Beach farmer's market but getting in touch with his Nebraska roots.

At Scheel's in Reno (which is allegedly the world's largest sports store), checking out the bridge shaped aquarium.

In Lincoln for Christmas 2011.

At California Pizza Kitchen in Virginia Beach.  Photo credit to Judy Coleman.

First time playing in the snow, in Lincoln, Christmas 2012.

Family Updates

Hello, everyone!  This blog post is a mix of short family updates:

It takes a village

First, thanks for all the support since we received Joshua's new genetic diagnosis!  It's such a blessing to know that people care, so thanks to all of you who have reached out.  As we've started to read more about 4Q deletion syndrome, one theme that comes up over and over is how much of a difference early intervention makes.  It's made me feel a wave of gratitude for the "village" of people who have helped us care for Joshua these first four years.  Thank you to the doctors and nurses who gave him so much crucial medical care.  Thank you to the therapists and teachers who have taught him so many important skills (and taught us how to help him).  Thank you to extended family, church families, and friends for surrounding him (and us) with love.  I'm very grateful to all of you!

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Joshua medical stuff 

Josh got an echocardiogram and blood work done earlier this month, and all the tests came back normal, which is great!  His transition off the feeding tube is also going very well.  His favorite foods are peanut butter, cheese, yogurt, and fruit.  He's gained a few pounds since he stopped using the tube this summer and he seems to be healthier than he's ever been (which might just be a coincidence, but in any case, it can't be a bad sign).   He still has the G-button in place for now and the plan is to remove it in March, once we make it through cold & flu season.  I'm glad the doctors have decided to take it slow with removal, because it's given us time to really feel confident that he can continue to gain weight and stay healthy without it.

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The start of our 4Q journey

We have been researching 4Q deletion syndrome, but there is not a lot of information out there, so our best source of information right now is the 4Q parents group on Facebook.  There is also an organization called Unique that registers the families of children with rare chromosome conditions, and then uses this registry to connect families with others whose children have the same condition. We have registered with Unique and made contact with a few other families whose children have similar deletions.  Interestingly, Joshua is the only (*registered*) person in the world with his exact deletion.  Unique operates out of the UK and it looks like most families who are registered live in the eastern United States or western Europe, so it seems very possible that as more and more people get genetic tests and as more geneticists worldwide learn about Unique and encourage their patients to register, we will eventually learn of at least a couple people who are an exact match with Joshua.  But for now, he is literally our precious snowflake.  (This is my attempt to reclaim that phrase and use it for something positive rather than mockery.)

One of the 4Q brochures said that knowing an individual's chromosome make-up is helpful in explaining symptoms in an affected child, but not so helpful in predicting the effects on an individual. This has been true for us - we've definitely had lots of "aha" moments in the last month, as several things make more sense with this diagnosis, but so far it hasn't been super helpful in showing us exactly what Joshua's future will look like.  We know that certain kinds of problems are much more prevalent in the 4Q population, so we will be periodically testing / watching like a hawk for those.  And it seems like with almost every kind of problem, the earlier you catch it and start treating it, the better.  So hopefully the diagnosis will be helpful to us in that way going forward.

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Joshua School Change

We moved to a new house in October, and since Joshua attends preschool through the public school system, he had to change schools in November.  I was pretty resistant to this change because we were SO happy with his last school - his teacher was great, we could see him making progress all the time, and he had a good friend in his class.  Fortunately, the transition to the new school seems to be going well.  His new teacher is very nice and we are continuing to see him make progress.  But mid-year transitions are always hard, so I would appreciate continued  prayers for J to adjust to this new school and to make new friends.

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Zoey Updates

Zoey doesn't get much word space on this blog because, fortunately, her health and development have been pretty typical, but today I'm giving her a virtual appearance.  Zoey has a very lively, mostly happy but always intense personality.  She is talking up a storm and is full of questions.  One of her favorites is, "Where did mommy go, mommy?"  She and Joshua are great buddies and playmates for each other.  Zoey's hair is finally starting to grow longer, so if anyone wants to send tips on [SIMPLE] ways to style toddler girl hair, I would appreciate it!  Right now I can get away with the Justin Bieber look (is that an outdated reference?), but we're going to need a better hair solution soon.
 
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Family holiday plans

We will be staying in Virginia Beach through Christmas Eve, and then we will travel to Nebraska from December 25 - January 6.  This is the first time we've spent most of December in Virginia rather than traveling back to Nebraska or Reno early, so it's nice to participate in some of the holiday festivities in our town of residence.  We are very excited to see you, Nebraskans, and we will be thinking of you on Christmas, Nevadans!