Things You May Not Realize About Special Needs Families

If you haven’t caught on already, we are a special needs family. That means that someone in our family is affected by disability of some kind. Our second child, Anna, has Rett Syndrome–a neurological disorder caused by a gene mutation, which affects her speech, motor skills, pain response, mood, and even her digestion and breathing. Since becoming a special needs family, we’ve been thrown into the world of other families affected by disability, and we’ve since joined the larger Special Needs Family both in our local community and even across the world (thanks to Facebook).  We’ve learned quite a few things about being a special needs family. Below are just a few of those lessons.

1. We’re not that special.

We are still just an average, ordinary family. It’s true that we didn’t ask for this, and I do think that those who do ask for it (like the foster and adoptive parents who specifically seek out children with special needs) are pretty special, but even they are just a regular family. Yes, our daily life looks a bit different. But there is still dinner to be made, sibling rivalry, chores to be done, and, thankfully, lots of love. We don’t necessarily want to be “inspiring” or “incredible”. Sometimes just getting through each day is enough. If our kids are happy and [relatively] healthy, we are happy. But we are human like anyone else. We still have times of yelling at the kids, burning dinner, being annoyed with one another, and having a messy house–just like all the other normal, average families.

2. We really don’t mean to be late, but…

Sometimes we’re late. More frequently in the early years, I think (though I can only speculate since we’re still in the early years and hold out hope it won’t continue much longer). Small kids of any kind can make you late. For instance, when you are putting your baby into the carseat and suddenly get a whiff of something… Or when your six year old just can’t decide what to wear. But when dealing with a child with special needs, those times can be more frequent, and take more time. If the child has a movement impairment, for instance, getting them in and out of the house for that last-minute diaper change can take an extra long time. Or if there is equipment to deal with, that can be time consuming as well. And sometimes just getting everyone fed, dressed and ready to go takes a surprising amount of time. Even when you get started ten minutes earlier the next time, somehow you still end up late. And then of course when you have a disability that affects mood, or communication, you can have last-minute melt-downs, crying episodes, or frustrating sessions of trying to figure out what’s bothering your child, and that can take an extraordinary amount of time. So if I’m late to your event… Sorry. I’m really not trying to be–we do our best to be on time–but sometimes life just happens and we have to deal with it.

And sometimes we don’t make it at all. Sometimes those complications and last-minute changes are enough to keep us home. Maybe our immune-compromised child started to cough. Or perhaps our child’s melt-down has no end in sight. Or maybe they had a medical procedure or appointment earlier that day and they are simply too tired. Perhaps your party was just at the wrong time–maybe skipping a nap really is detrimental and we can’t veer from the schedule. So we’re sorry. We really do want to come to your party. We’d love to be able to have fun with you. But sometimes the disability gets in the way. Sometimes we just have to say no. And we hope you understand when that happens.

3. We want awareness… But we might be tired of explaining.

And really, that might be why awareness is so important. Because when we don’t have to constantly explain why our child isn’t speaking, is crying inconsolably, or is taking so very long to go up those steps, we have more time to focus on the task at hand. I would like to say that the stares and curious glances don’t bother me, but I’d be lying. Sometimes I want to shout to everyone around me, “She has Rett Syndrome, okay?!?!” But those awkward moments when someone will ask her a question, she of course doesn’t answer, and then I have to go through my little speech explaining that she has a neurological condition which causes her to not be able to speak. Now, sharing and awareness is good. We handed out Purple Cards at Halloween (both at grandma’s door and while we went from house to house) and I post quite a bit on Facebook. But trying to explain in person why my daughter just tried to bite your child, or why she’s screeching at the top of her lungs in the library, or why, after she “hit” your child, I’m soothing instead of scolding–that can be exhausting. Because I’m just trying to go about my day and live our life. Because we’re just a normal family with errands to run and places to go, remember? And I’m trying to focus on my child. So while I want you to understand and give grace to my child, I also sometimes just want to blend in. I think I could write a whole separate blog post about this, but I’ll end it here. Just know that as much as we want others to be aware and to understand, we also want to just live life and move on with our day without making every moment an awareness campaign.

4.We are fierce.

Especially the moms. Mama Bear never goes into hibernation. We have to be strong. Even if we’re not naturally strong or outspoken, we quickly become fierce when our child needs an advocate. We go to IEP meetings, discuss treatment plans with doctors, confront bullies, and then still have to deal with everyday life (which can be a bit more complicated). Oh, you’re parked in the handicap spot without a permit? Yes, I will call the cops. I earn that permit every day and I’m not going to tolerate you violating our rights because you don’t want to walk ten extra feet. No, I will not settle for that IEP when it is ignoring my individual child’s needs. That’s not good enough and I will make it clear to you what needs to be done. And yeah, if your child is teasing or taking advantage of my disabled child, I’ll intervene–no question about it. So don’t mess with special needs parents. And I mean that in the nicest way.

5. We are a tight knit group

We don’t need a lot of time together to quickly become friends. We get it. We understand each other’s struggles. Things that typical families, compassionate and loving as they may be, just won’t ever understand. And so we stick together. We fight for each other. We hold each other up when we’re faltering. We celebrate together when we have victories. And we aren’t at all fazed by one another’s stories involving bodily fluids. We spent only five days with special needs families at camp this past summer, and we were instantly able to open up to one another. There’s no pretense. And there’s no time to be coy. We were honest and raw in our small groups. We were accepting of each other’s families. And we became friends very quickly. We may have different philosophies of care, might be in different denominations (or different religions altogether), and might not be experiencing the exact same difficulties (even with the same diagnoses), but we are connected. We love each other, and we’ll stand by one another. We’re a family.

6. You need us

Yes, special needs families need typical families for practical support. You make great babysitters and we love it when you fix us a meal or clean our house. But did you know that you need us? We teach your kids acceptance, compassion, and empathy. We teach you to appreciate your children’s abilities and maybe to slow down and enjoy them a little more. We give life some variety, and bring a new perspective to the table. We help create understanding, awareness, and generosity. Maybe you Run For us, or maybe you volunteer at a camp. Maybe you both spread awareness and raise funds by buying our gear. Or maybe you cheer us on when we reach a milestone. But you need us. Not just to have a cause or to make yourself feel good about helping others, but to deepen your level of understanding, to further your kindness, and to broaden your views on abilities and the value of life. You need us to build your character. And we do the same with each other. We learn from other families with disabilities. And we learn from our own disabled loved ones. Life is learning, growing, and changing over time. And families with disabilities help to facilitate those things.

 

So maybe you did know some of those things, but maybe you didn’t. I hope that you learned at least a little something, and have reason to ponder it a while. I hope that you will give us grace, be patient with us, and think of us often when we’re not around. I hope you develop a new sense of understanding of what it’s like to live with disability.

Special Needs Families, is there anything you would add to this list?

Book Review of “If Only For This Life” and Author Interview

The following is a two-part post comprised of a book review and author interview.

 

Part One: The Book Review

People who know me well know that I am a bit of a fangirl to Robin Hardy. I’m almost afraid to admit how much I adore her books, as she might be a little creeped out and unfriend me on Facebook. However, I do try to keep a balanced view when telling others about her books, and a formal review like this one ought to be at least a little unbiased. So I will try to contain myself and not spoil you (too much).

The absolute best way to read this book is to read all of the other books first. This is a “Salmagundi”–which is a fancy word for “mixed salad”. I looked it up on Wikipedia, so I know that must be true. *wink* Anyhow, this is a “crossover” between the Streiker Saga and the Sammy Series. Streiker has three (and a half) books, and Sammy has eleven. And yes, I’ve read them all. The “half” book for Streiker is when he makes an appearance (and actually plays a big part) in “His Strange Ways“, which is the sequel to “Padre“.

What you really need to know about Streiker is that it is an allegory. And Sammy, while fiction, is meant to take place in reality–not an allegory. So the combination of allegory and “reality” (though fiction) is a very interesting mix. It takes a great deal of care to combine the two and not get things terribly mixed up. Also to note: If you have only read the first edition (or second) of “Streiker’s Morning Sun” (book three of the Streiker Saga), you will need to read her most recent edition, which has a VERY different ending. In some ways, I hated the new ending… But in other ways, I really loved it. While my ever-the-romantic side of me would have preferred the original ending, my finding-deeper-meaning-and-poignancy side much prefers the new ending.

The book began in typical Sammy fashion–a pretty girl pays him extra attention, and then he gets himself in trouble. Oh, Sammy…

So he gets himself in a pickle and must get out. And who helps him? Streiker, of course! He loves to help. And after he helps, he likes to put people to work. That’s just his way.

It’s difficult to write this review without giving away too much of the plot, as it all requires some explanation, and I think the surprise is too great for me to spoil it for you. That said, I will continue the review with the intention of depicting the sorts of emotional responses the reader might expect. First, if you are a fan like me, you will enjoy the nuance of familiar characters and making connections. And of course, you will love Sammy, and want to find out how he gets himself out of trouble this time. Next, you’ll be drawn into the mystery, as more and more strange things happen. They may take you by surprise, but–you will also come to expect them, simply because you know Streiker and his ways (they are strange, after all!). But then, you’ll probably be confused again, especially if you have read the original Streiker Saga (multiple times, like me).

But the confusion draws you in, and you MUST finish in order to figure out the truth! And then, a partial solution, but you know there must be more because you’re only two-thirds of the way done. Some pieces start to come together, but… perhaps not enough to understand the full picture.

And then the ending comes. Too quickly, and yet, not soon enough. You’re eager to reach the end so you can understand, but once it arrives, you want the story to continue (and it will in the next book!). In the final chapter, I was reminded of C.S. Lewis’ “The Great Divorce”. No, Sammy doesn’t die. Don’t worry–you know he always (barely) escapes death! But there is a hint of what we know as reality, and what the “more real” reality is. The divide between this life and the next, and the convergence of different realms… It’s a subject that some Christians want to avoid, because it’s not quite clear enough to our finite minds.

“Such knowledge is too wonderful for me; It is high, I cannot attain it.” (Psalm 139:6 NKJV)

The supernatural, the miraculous, the spiritual–these are subjects that some would side-step, though they really ought to be addressed. If the spiritual realm is not real, why then should we ever strive to get close to God? Christians should be talking more about these things. Many are quick to agree that miracles happened in biblical times, but are quick to reject modern-day miracles. They will give a theological analysis of the spiritual realm, but deny that those forces might be at work today. This book does not shy away from addressing those topics, and even depicts the confusion and initial denial of a supernatural force at work.

Robin may not be an official theologian (nor has she attended any seminary), but this book does bring up very good questions about our interactions with the supernatural (whether we are aware of it or not). And because of that, it remains with the reader, as the consideration for these things continues to float around. I had to sit and think for a couple of days before I began to form a full thought for the review. I had to chew the cud, so to speak, to really figure out what I thought about the book. Of course I loved it, but to go beyond that and have real insight and to write a genuine review that is more than “I enjoyed it” takes some time and intention. So the conclusion I came to is this: The book is enjoyable, but it goes beyond that and challenges one to consider things that they may not have given much thought to before reading. And even if you had considered, the images and allegory of it all make it a little more tangible–almost understandable, even, though I’m certain (as is Robin, I’m sure) that there are many more mysteries much “too wonderful” for us to understand.

“This is a huge mystery, and I don’t pretend to understand it all. What is clearest to me is the way Christ treats the church.” (Ephesians 5:32 MSG)

 

Part Two: The Interview

[Robin:] Thanks for the opportunity to do this interview, Grace! Your observations about writing and literature have always been insightful, so I’m interested to see what you ask.

1. For those who are not familiar with your books, what is one thing you would want to tell them before they start reading?

I’d like to say, “Kids, I’ve been writing for a long time—my first book was published in 1984—so I discarded the approved rules for Christian fiction long ago. I generally don’t express what I believe through what my characters say, but through the plots. That means some of my characters are going to be hypocrites and some are unsaved. But all my books have happy endings, because that’s the ultimate outcome of Christianity.”

2. Those who follow you on Facebook know that you are quite fond of the older theologians and early Christians. If you could only read one theologian for the rest of your life, who would it be?

You give me too much credit for highbrow reading. The fact is, I’m distrustful of theology because I don’t believe any human can codify God’s working into a neat little system. When the Apostle Paul gives it his best shot in Romans, he concludes with the frustrated exclamation in 7:24 (“What a wretched man I am!”) But I do love reading about old believers because their lives are each a plot that shows the great working of God. Since there are too many I haven’t read, I don’t want to cut out any prematurely, but, yeah, my favorite is the old Scottish preacher Samuel Rutherford.

3. So we all know who Fletcher represents in your books. Does Sammy represent anyone you know in real life?

Sammy’s characteristics have been drawn from many people—years ago, I sat at a college baseball game and watched a guy walk up to the bleachers and start talking to a couple of girls. He was so smooth and charming, pretty soon a lot of people were watching him instead of the game. Later, I watched another really cute guy in a parking lot gather signatures on a petition. Naturally, I went right over to sign it, whatever it was. His wife brought their baby to see him, and he dropped everything to play with her. All that went into my Sammy file. Eventually, Sammy became my alter ego; that is, if I could say or do whatever I wanted without fear, I would sound a lot like him. In The Sammy/Streiker Salmagundi, when he first meets Streiker, Sammy embodies the questions: “Can I do what God asks when it makes no sense? When I might get hurt? Or worse, when it might embarrass me?”

4. Of all your books, who is your favorite leading man? And your favorite leading lady?

Sheesh, you’re asking me to pick my favorite children. I guess that would have to be Ares and Nicole of the Latter Annals of Lystra because they are the most fully developed, as their story plays out over nine books. Since Sammy can be so provocative, the more I write about his wife Marni, the more I admire her. Streiker is hard for me to grasp beyond his power and his faithfulness. But I like how Adair has grown—she’s surprised me with her resilience and sense of humor, especially in the way she interacts with Sammy in the new series. She totally flummoxes him, which is fun to watch.

5. You write. You garden. You sew. You make wine. Is there anything you don’t do?

Ha. I desperately wish I could sing, dance, draw, or play an instrument. Also: play a sport—ANY sport—do basic car maintenance, make furniture. I’ve been trying to learn Latin for years. And computer programming. I want to grow exotics, but the best I’ve been able to do is fill the seat in my shower with orchid plants. I am a big bag of fail.

6. Who is your favorite classic author?

C.S. Lewis.

7. Let’s talk about your writing method. Are you a “write it on the fly and edit later” kind of writer, or a “work out all the details carefully in an organized fashion and write it only when everything is juuuuust right” kind of writer? Or something in between?

Here is how I write: I start digging in a likely spot in the side of a hill. When I’ve made a big enough hole, I reach in blindly and grab the first thing I feel. I pull it out, look at it, and lay it out on the grass. Then I reach in again and pull out something else. I place that beside my first find and see how they look together. Then I continue to dig and mine, dig and mine, until I have all these pieces strung out. I pat them flat and paste them together—sometimes I have to cut and rearrange parts to make them fit right. Then I hang the whole thing on the fence to dry. When it looks ready, I hang a “for sale” sign on it and go back to dig some more.

8. Any news on the Streiker movie?

All I know is that the producer is working on assembling talent and funding for the project. Anyone who’s interested, I’d love for you to ask her for updates via the Facebook page: https://www.facebook.com/streikermovie

9. In which of your characters do you see yourself the most?

My idealized self-portrait is the talented, compassionate, righteous Pam Taylor, Sammy’s mother-in-law. But in my heart I know I’m much closer to the wicked, manipulative, entertaining Renée (in the Latter Annals).

10. And finally… At the end of If Only for This Life, you mentioned that there would be another book coming in this “Salmagundi” (love that word, by the way!). Can you give us just a little hint as to what that story might be about?

Thanks! In Book 2, Abby’s Monsters, Sammy accepts a challenge from reality TV star Abby Max to compete against her on her show. Annnd, things start going off the rails from there. Adair, who is not dead, becomes something of a guardian angel to Sammy and his family while he is much surprised to find out that he can get hurt doing what Streiker tells him to do. This book will be out November 2015.

 

Links for “If Only For This Life” listed below:

Amazon (paperback and Kindle)

Nook

Kobo (epub)

 

Surviving The Spiral

Moms, you know the spiral. Maybe you have another word for it, but it’s what happens when caring for and guiding little ones gets the best of you. Regardless of your child’s age, your parenting style, your personality, whether your work or stay at home, or any other factor, it seems to happen from time to time. You may not be a yeller–that might not be your M.O., but we all have those moments when we just… lose it.

It might not even be a bad day. Maybe you started out the day great. You woke up after an acceptable night of sleep (not exactly luxurious, but not totally deprived, either), and miraculously, you even made it out the door on time! You spent your day reading peacefully, playing games, and doing housework here and there when you weren’t holding a child (or maybe you did it while holding a child). Everything seemed, well, just fine. And then there was just that one little thing that happened…

Your oldest child ignored you all three times you asked her to clean up her toys before dinner. Speaking of dinner, it burned. And then the baby wanted you to hold him (as you were trying to take the burning dinner out of the oven), and your middle child had a mood swing. Then comes your first yell. It takes you by surprise, because everything before the last 45 seconds was going so well! You start giving an exasperated instruction to your oldest, and you feel your voice growing louder as it exits your body. Your heart pounds, your head swims, and there’s a part of you wondering where this monster came from. After your oldest begins her own bit of yelling and fit-throwing, you turn away to suddenly see the HUGE MESS in the living room. It’s been there almost all day, but for some reason, it only started bothering you about 0.025 seconds ago.

Suddenly that living room is the dirtiest it’s ever been and you are certainly the ONLY one who ever cleans it up. You yell (again) for pretty much anyone to clean it up as you go into the kitchen to rescue yet another part of dinner that might be a tad overcooked. The baby tries to climb into the oven while you are taking a very hot roast out of it, and you manage to keep him at bay by putting your foot against his chest, while closing the over with the opposite knee/hip combo. It’s quite a feat. Cirque du Soleil has nothing on a mom with a baby near the oven.

Your husband sees you slightly unravelling and tries to wrangle the kids to keep them from bothering you (or rather, removing them from the path of Hurricane Mom–for their own safety). He might mutter something like, “Calm down,” or “Relax”, or even, “It’s not a big deal.” But those all sound horribly patronizing and you snap at him: “Don’t tell me to calm down!” or “Nothing is going right today!” (even though everything was going right until about three minutes earlier).

Eventually, the living room gets cleaned up (relatively), dinner isn’t totally ruined, and your child stops throwing a fit. But still, you need that reprieve. Just before serving dinner, you take approximately four-and-a-half minutes to “go to the bathroom real quick”, in which you don’t even enter the bathroom and just hide in your room, in the dark, until your pulse goes back to normal. You then exit your room, greet the now-happy family with a smile, serve dinner, and enjoy your evening.

No one died, the kids bounce back easily, and your emotional explosion was only temporary. But still you can’t help but feel a little guilty for the yelling and snapping and general moodiness. What happened? Life just got to you. You’re busy. You’re under a number of various stresses. You may be in need of some time out of the house, without the kids. Maybe you are an introvert (like me!) and sometimes you just need a few minutes ALONE to recuperate and reenergize. Whatever the reason, know that you’re not the only mom to enter the spiral. Millions of other moms–trillions if you count the ones in past centuries–have experienced that same spiral. In those moments, it seems like nothing is right and you’ve simply failed. You haven’t failed; it’s just that you live in an imperfect world where sometimes mom forgets about the roast and children are cranky and husbands say the wrong thing (though with the right intentions).

So give yourself some grace. Take a minute to breathe. Know that your children will forgive you. And then move on, remembering the incident later so you can learn from it. Teach yourself some “calm-down techniques” and maybe invest in some aromatherapeutic oils to help you settle your nerves. But most of all, that grace is what matters. Not as a license to yell whenever something doesn’t go your way–of course we want to be moving in the direction of a more peaceful home–but knowing that WHEN you mess up (because you will!), your family will still love you, and you can always try again tomorrow.  And the next time you find yourself at the edge of the spiral, maybe try something new. Step away, take a breath, and regroup. And forgive yourself when you inevitably mess up again.

Now go fix yourself some tea or coffee, snuggle up with a good book, and do what you need to do to keep yourself from going down that spiral!

 

 

What do you to when you feel yourself losing control? How do you keep yourself from losing it? Any tips for other moms?

The Heavy Burden

I was reading in Heart & Hands today, but had to stop when I nearly came to tears. It was nothing tragic, or even touching, in the text. It was simply the weight of it all. Understanding how great a burden midwives must carry when they enter a birth. You cannot place yourself under that responsibility in a light manner. You cannot say, “Everything will be just fine”, because you don’t know that it will be. Yes, statistics are on your side. It is most likely that the only complications will be small ones, but there are still so many unknowns. So many possibilities that you cannot plan for, because they don’t come to light until you only have a split second to recognize, and then act accordingly.

As I read through the chapter on Complications in Labor, I couldn’t help but imagine myself in each situation. I had to walk myself through the steps given, even holding out my hands to get a grasp on the positioning in the “Screw Maneuver” for shoulder distocia. As I walked myself through the procedures for each complication, I became more and more aware of the things that could go wrong, and how I–when I become a midwife–will need to respond to each one, and what a great burden that will be.

This is not to say that birth is scary–in most cases it is not; most women labor and birth without complications, and everyone is happy and healthy in the end. This is also not to say that it is too much for me–that I would give up my pursuit of the field. Rather, it has impressed upon me the sacredness of it. The importance of approaching my study in midwifery with great respect and careful attention. The need for a thorough education, an uninterrupted focus, and an intentionality in my reading. Being acutely aware of the responsibility I will carry, and understanding the risks and importance of the field, I can enter into it with informed consent to the world of Birth.

There will be physical exhaustion, mental consumption, and emotional fatigue. But there will also be great joy, exultation, gratitude, and beauty. The bringing of life also takes us closer to the threat of death. But if we pay close attention, if we keep our calm, are confident in what is to be done, and if we remain intuitive, we will have the tools we need to do all we can to bring life and thwart death.

It is a heavy thing, to be burdened with the task of safeguarding new life. It has washed over me like a fierce tide, preventing my breath for only a moment until the water subsides and I can take in a lungful of refreshing air. It reminds me of why I pursue it–that first breath, coming out of the womb. It’s said that when a woman gives birth, she is also born into motherhood. So, too, when a new midwife–or future midwife, rather–begins her focused pursuit of that calling, she is born into the select field of women who heard the calling to be the guide for new life to enter our world. She comprehends and accepts the risk, knowing that the reward will be all the greater for those willing to step forward and carry that burden.

I am not frightened by this prospect. But gone are the notions that every birth I’ll attend will go in a perfect manner. Gone are the naive assumptions of simplicity. And here comes my burden. Here comes the weight of guiding new life into our world. Here comes the heavy yoke of attentiveness. Here comes hours upon hours of study. Here comes the understanding of my purpose in the field.

Here comes my calling. My birth into midwifery. My first breath.

Vacation!

We needed a vacation. Rarely do we take trips as a family. I may take the kids somewhere, but all of us together? Hardly ever happens. Maybe once every few years. But this summer, we made it happen. We just had to make it happen. This past year has been difficult. Many changes, many challenges, many times where we felt like we were falling apart at the seams. But we all came together for vacation. So here’s what we did–and why it matters.

We started our trip by visiting my parents on the coast. The salty ocean breezes were refreshing and  invigorating. As soon as we reached the coast, we rolled down the windows, inviting high winds to flow all around the van. Anna was having a blast with all the wind–she laughed hysterically as it blew her hair in all directions! We didn’t “do” a whole lot there. We did a little walking along the boardwalk in Depoe Bay. Looked out over the gorgeous Oregon coast in Boiler Bay. Went to my parents’ church and met a few people. But mostly, we just hung around the house, went for a little walk in the woods behind their house, and chatted about this and that. I wish my parents lived closer (or that we lived closer to them) so my kids could spend more time with them, but we take whatever we can get!

After a couple of nights with my parents, we headed off to the family retreat put on by Joni and Friends. From the moment we set foot in the camp, we were at ease. That doesn’t happen often. We were greeted warmly by the whole group of volunteers, and they made everything about checking in so very easy! We met our WONDERFUL “buddies” (as my daughter calls them)–aka “STMs”, or “Short Term Missionaries”–and set up in the cabin. And then a strange thing happened. The kids went off to explore with their STMs, and we had about an hour to ourselves. We walked, talked, saw some deer… It was incredible. I adore my kids to pieces and love spending time with them, but even people who love each other deeply still need a break sometimes.

The following day, we had some fun with “creative hair day”: Leah had her hair spray-painted pink, Damien got a faux-hawk, and I put my hair up in curlers. I normally wouldn’t go along with little games and events like that, but for some reason, at this particular camp, it just came naturally to participate. The first full day included a lot of getting used to the flow and pattern of the day. After breakfast, we went to an all-family worship service. I smiled when I saw that kids were not only allowed, but even encouraged to come on stage and sing along with the worship leader. They were not expected to sit quietly in their seats, or have a seat at all. Some kids jumped around, some walked up and down the aisles, and some (like Leah) tried their hand at ribbon sticks and tambourines.

Following worship, the kids went to their Program. Little ones went in the nursery; bigger kids went to hear a story, do crafts, and a few other activities; teens and adults with I/DD had their own programs; and adults stayed in the meeting house to hear from the camp pastor. The camp pastor was Brian Sakultarawattn (please don’t ask me to pronounce that last name–I’m still trying to figure it out!). He and his family are incredible people, and we highly enjoyed hearing their story of amazing faith, and had a great time chatting with them over coffee one afternoon. If you’d like to hear their testimony, here is a link to an interview at SD Rock Church.

After we heard from Brian as a couple, the men and women split up into smaller groups. The women each had a group of about 5-6, and we talked about a variety of subjects. We talked about our kids, our marriages, our daily life, our fears, struggles, and victories. I won’t betray the confidentiality of that group, but suffice it to say, we found a lot of common ground, and we were all encouraged and strengthened by being in that group.

We came together again as a family for lunch, and then we split up again in the afternoon. At this point, you may be thinking, “Isn’t this family camp? Why are you spending so much time away from your kids?” As I said before–sometimes people need to be apart from the ones we love in order to reconnect and appreciate each other more. And particularly for special needs parents, time on your own and not being needed is an incredible gift. We love our children fiercely–but there is quite a bit of exhaustion and “touching-out” that goes along with special needs parenting. Taking time away from your children helps to re-energize you, give you perspective, and makes the reunion with your children all the sweeter. And let’s be honest–the kids probably enjoyed the break from us as well! Leah cried almost every evening when she had to say goodnight to her buddy. You’d think going back to the cabin with mom and dad was a punishment for her!

So at 4:00pm, the STMs got their break, and we all took some quiet time in the cabin. Sometimes the kids slept, sometimes they didn’t. But having down time, without “going-going-going” was good for them. After that was dinner, and we were reunited with the STMs. There was a little down time between dinner and the evening worship service. Once again, the kids were encouraged to worship at the front with lots of noise and movement. Each night, we had something a little bit different for our evening get-together. Tuesday was a magician; Wednesday was a talent show (details below). Then we had dessert (!) outside, with a little hanging-out time.

Wednesday afternoon was a “pampering day” with the ladies. Oh, was it wonderful! Pedicures, manicures, massages, foot soaks, haircuts, and clothes! Yes, clothes! They told us before the camp that we would be given two Cabi tops, but when we arrived, they gave us at least a couple of full outfits! What a blessing! The afternoon was over too soon. And what did the men get? Steak. Lots of steak. In the evening, we had the talent show. It was as adorable as it was touching. There were a lot of performers, and each one was given a full round of applause. What’s incredible about a special needs family camp is the understanding that something that wouldn’t be considered a “great talent” for a typical person, suddenly becomes an amazing accomplishment for a person with special needs. And those who performed who did not have special needs were just as enjoyed. Some were silly, some were fun and energetic, and some were inspiring. Everyone had fun at the talent show! And yes, our family–just one of us, actually–did participate. Leah performed a dance with a ribbon stick. She was shy at first, but then she warmed up and did a great job! I’m so proud of her for getting on stage and dancing in front of everyone!

Thursday’s highlight was definitely the square dance. Even Mitch joined in! It took some new friends pulling him into the gym and “forcing” him, but he did it. It was lots of fun! Even after I had to stop when Damien wanted to nurse, I still had a blast watching everyone else dance, and hanging out with our new friends. But at the end of the evening, there was a slight sadness. We knew it was our last night, and we didn’t want it to end. We wanted to just… stay. To live at camp. With our STMs, of course! But we had to leave. To return to real life.

But before we returned to real life, we visited my cousins in Portland. After driving their insane freeway system, Mitch says we’re not moving there. Well, that’s still up for debate, really, but it was not fun. However, while in Portland, we visited the zoo, which was loads of fun for the kids. But mostly, we just spent time with our family. It was just like old times, when we hung out back in San Diego. But now we have kids. Which actually made it more enjoyable in some ways. Watching our kids play and hug each other was heart-warming. It made us wish we were closer to them. But life is what it is right now, and we can’t move everywhere our family is. We can only be in one place at a time.

And then we returned home. To real life. With housework to be done, dinner to be made, school to start, and appointments to attend. Coming back after vacation is hard. Not only is it getting back into the routine of daily life, but it’s having to wait another year before we (hopefully!) see our friends again. It’s going day-to-day on our own (we miss our STMs!). It’s the mountains of laundry still waiting to be caught up on. It’s trying to catch up on sleep. It’s missing our family.

But now we have more to look forward to in the future. We have friends and family with which to reunite. We have that week of relaxing to look forward to. We have the hope of learning, growing, and becoming a stronger family. Year by year, we gain traction. It gets easier. It’s less of a shock–it’s just life.

If you have a loved one with special needs, I urge you to go to this camp. I would also urge family, friends, church members, youth groups, and more–to consider being an STM. It is highly rewarding and will change your life. There will be two (separate) weeks available for camp next year, as the need has grown. With the need for special needs family to have a retreat, there is also the need for more volunteers. And not just STMs, but those who would give of their time to give a massage, cut some hair, bring a therapy animal, offer counseling, or heft some equipment. Volunteer in whatever way you are gifted. I promise, it will be well worth your time to do so.

I’ll close with this year’s verse, Romans 15:13…

“May the God of hope fill you with all joy and peace, as you trust in him, so that you may overflow with hope by the power of the Holy Spirit.”

8 Tips on Packing for Vacation

Yesterday we packed to go on vacation. We leave today, and apparently my littlest one is too excited to sleep. While the house is still quiet–before there’s breakfast to be made and more stuff to bring out to the van–I’d like to share with you some tips on how to pack for vacation.

1. When packing your baby’s clothes, select the exact number of outfits that you think you will realistically need while on your trip. Now double it. It’s a scientific fact that babies have more blowouts, baby food mishaps, and clothing needs when you are away from home.

2. For yourself, pack… whatever is clean and fits. By “fits”, I mean both fits on you (don’t bring those “when I lose 5 more pounds” pants) AND fits in your suitcase.

3. Bring toys. Lots of toys. Because the children will get bored.

4. Be sure to stay up late the night before you leave. Don’t do anything important. Just veg out a little, even though your baby is actually sleeping (it’s a miracle!!!). Don’t worry about being tired while you drive. Lots of coffee and some good tunes will take care of that.

5. Speaking of music… Be sure to have your husband make up a music list to load on an SD card for the trip. Pray he puts things on that you actually like.

6. Don’t forget extra diapers. That jumbo pack that usually lasts you a month?? Yeah, bring the whole thing. I know you’ll only be gone a week, but… refer to #1.

7. Make a list of things you will need to bring on your trip. Check it twice, or even three times. Check it again once more before you leave. Even with all that checking, you’re sure to still forget something. But don’t worry–you can just buy whatever you need along the way. For twice the cost of what you paid for it back home.

8. Don’t forget your phone charger.

 

Have any packing tips for our readers (or for me)? Post them below!

Becoming a Balanced Doula

I recently attended a birth where intervention was necessary. In short, it was an induction leading to cesarean. I can’t give too many details for the sake of client confidentiality, but suffice it to say, it was a difficult labor and birth. And it was the first time in my five years as a doula that I recommended cesarean. It was a little foreign to me, to tell the truth. Isn’t my job to prevent those kinds of things? That’s what all the “Reasons to use a doula” lists on the internet say. So shouldn’t I be pushing the parents to keep trying for that natural birth?

No. That’s not my job.

My job is to support and to help the parents make the decisions that are best–safest–for their family. And if that means suggesting an epidural, or recommending cesarean, then that’s what I will do.

I feel that in my short time as a doula, I’ve become a little more balanced. I’ve been to a few home births, a couple of birth center births, and a few hospital births. All but one of the hospital births I’ve attended have been inductions. One was a high-risk pregnancy with low amniotic fluid and the baby was at a great risk of infection; two were after ruptured membranes and no active labor. Some doctors have been more in favor of natural than others. Some nurses have been friendlier than others. But regardless of the situation–no matter what interventions the mother opts for, or what choices she makes in her labor, my job is to support.

And really, when you think about it, sometimes those inductions need more support than the natural labors. Trying to get into labor–the stress, the pressure, the time constraint–I’ve been there. I’ve had that experience myself. And then the added pain of Pitocin? Yes, that mama is in great need of support.

Some doulas become snobbish in which births they will or won’t attend. Some will only attend home births. Some will only attend hospital births. I’m comfortable in either setting, and I’ve found that I’m also comfortable helping mom to make the decisions that are best for her and her baby. I won’t speak for her–that’s not my job–but I will help her to weigh the options and discuss the risk and benefit for each possibility.

But again, I think I’ve become more balanced. No longer do I hold to the ideal that a natural birth is the only “good” birth. Nor do I assume that every mom who had an intervention is facing depression and guilt over her choices. Sometimes those choices are the best choices. And if I can give mama and papa enough support to accept their decisions, to be happy and comfortable with their decisions, even if–or especially when–those decisions weren’t on the birth plan, and were not what they had dreamed of in their childbirth class, then I have done my job.

There have been births where I have felt almost useless. After a few hours, they didn’t need me. But after the fact, they tell me, “We couldn’t have done it without you. Thank you for being there.” Maybe they don’t need me for the whole birth. Maybe they just needed me as “training wheels”. Maybe it only being the two of them at the birth was exactly what they needed. But knowing that I was there when they needed me, and that I gave them the support that they needed in those moments, and that I fulfilled whatever need they had of me for that birth… knowing that, I can feel that the birth was just as it needed to be, and that I played the role that was just right for that specific birth. Whether I rubbed her feet, or helped her breathe through contractions, or told her, “It’s okay to get the epidural,” I know that whatever I did was just what they needed. And that is my job.

That is what a doula does. Listen. Educate. Support.

When Change is Needed

I thought we had the perfect curriculum. A blend of three styles of teaching that would of course come together perfectly to create the perfect homeschool experience for my children. But halfway through kindergarten, we realized two things.

1) Leah is not ready for kindergarten. We need to hold her back.

2) This curriculum is not right for us.

Deciding to hold Leah back was not as much of a decision as it would seem. Please don’t misunderstand, Leah is a very bright young girl with loads of imagination and intelligence. But she’s not quite ready to focus on school. We’re working on it, and she will get there, but school was becoming a serious problem for us, usually ending in tears (sometimes hers, sometimes mine, sometimes both). And since we had actually started her early, we weren’t really holding her back–we were just waiting until the time she would have normally entered kindergarten, had she been in public school. I wrestled with it for a while, but I talked things over with some friends from church (who were all teachers), and they confirmed my suspicions that she wasn’t quite ready yet, and we needed to wait another year, and slowly build up to it in the mean time. So that’s what we decided to do.

On the second issue–curriculum–I’m going to try very hard to be neutral about this. Different curricula fit different families, in different seasons. Unfortunately, the only way to know for certain if a curriculum fits or not, is to try it out. You know… spend hundreds of dollars, not to mention precious time and energy, all to determine that yes, this is a good match, or no, it’s not a good match and you just wasted a bunch of money. It’s really the only way to know for sure. So the first few years of homeschooling, for some families, looks like something completely different every year. “We’re going to do unit studies… Scratch that, we’re going Classical… Well, that didn’t work; how about Traditional?… No? Fine. We’re unschooling.”

Also unfortunately for us, we had purchased first grade from this particular curriculum company, which means that not only did we discover, halfway through the year, that we’ll be a) pushing kinder out another year, and b) switching curricula, but we also spent $250 on curriculum that will not be used. So now I’m trying to sell my never-used curriculum at a discounted price–at a total loss to us, that is–in the hopes that I will salvage some of what we spent on it. Talk about buyer’s remorse!

And it’s not a “bad” curriculum. I’d still recommend it for some people. But it doesn’t work for us. I won’t go into all the details, but suffice it to say, it wasn’t a good fit, and now I’m glad we’ve given that a try. It was a nice practice run, and it helped me to narrow down was does work for our family, and what Leah needs from me in order to learn. But, yes–unfortunately we did waste money, and we’re stuck with it for now. If we can’t sell it, we’ll try to make some use of it, because that’s just the kind of thrift-minded people we are.

It was time for change, and we changed, despite all the reasons not to. Those reasons were financial (let’s just use what we’ve already paid for), emotional (I don’t want Leah to feel bad about being held back), for the sake of convenience (we already started kindergarten; we might as well finish), and from pride (I don’t want to admit we were mistaken). These reasons were outweighed by the overwhelming sense of RIGHT. It was right to hold her back, even though it was hard and inconvenient. It was right to change curriculum, even though we had already started the other one, even though we had paid for the next year, and despite my pride not wanting to admit I was mistaken.

I’ve also had two friends change their curriculum or homeschool plans in the past few months. They cited similar reasons:

The format of the curriculum either wasn’t a good fit for their child’s learning style, or didn’t suit their family’s needs.

They were pushing too hard in one direction that they thought was right, but it wasn’t right for their child.

They wanted to actually enjoy school and not be burdened by the demands of a curriculum that was modeled too closely to traditional school.

And things may change again in the future. But the important part is being willing to change. To be flexible and pliable; able to move and adjust as needed. The only thing that is constant is change. We have to learn how to change willingly and gracefully. Changing begrudgingly, bitterly, grumblingly–that causes more pain and anguish, and makes the change so much harder. To accept the change with faith, joy, and humility–eases the growing pains and makes the change more bearable. In fact, I’m now excited for the change. I had my misgivings in the beginning, but now I see what a relief it will be, and I look forward to the change. We will continue to do little things here and there to keep her mind active and retain what she’s already learned, but the coming days will be so much easier and therefore, will produce more learning, as there will not be the distraction of frustration and discouragement.

Change is good. We’re looking forward to it.

 

So what changes have YOU made lately? What are you looking forward to in the near future? What kinds of struggles or challenges have you met in that process of change? Do you now see the benefit in change?

 

Curious about which curriculum I’ve chosen in place of the old one? You can follow this link to find out more!

I took a week off social media and here’s what happened.

I was in a funk. I was tired from a baby keeping me up all night, which in turn made me want to just sit all day. I procrastinated house work and grumbled to myself when I did the things that couldn’t be avoided–making dinner, changing diapers, waking up to give Anna her meds… I don’t blame Facebook and message boards for my funk, but they weren’t helping, either. If I used those outlets as an intermediary and a cure for my lethargy, nothing would ever change. I would remain where I was, and that wasn’t good. Having dealt with depression in the past, I knew I needed to be proactive in my approach to this funk, before it turned into something more serious.

So here are a few of the things I did do this past week, which were changes (even if only very slight changes), and which helped me to dig myself out of the funk.

1. I read!

I. Love. Reading. When I was young and had no children (or, let’s be honest, any real responsibilities other than school and a few simple chores), I read all the time. I’d read at school, at home, on vacation, on missions trips–I was always reading something. But not long after I had children, my reading-for-pleasure quickly disappeared. The only reading I would sometimes do, when I remembered or had time for it, was parenting books, and maybe a devotional. I’d turtle through them, or sometimes I’d just stop halfway through and just forget about them. Well, I still have kids, so I’m not doing any marathon reads anymore (where I’d read a book in a day–usually 8 hours or less), but before, I was spending my “few minutes here and there” between chores, or while nursing, or when Daddy got home and I could take a break–catching up on social media. So instead of my couple of free minutes being used to scroll through my news feed, I spent it reading a few pages of a book. I have yet to read an entire chapter in one of these intervals, but little by little, I’m getting through them.

2. I wrote

I have a few writing projects I’ve worked on over the years. Sometimes I get stuck and put a project on the back burner for a while. Since having Damien, everything has gone on the back burner, and I’m lucky to get one blog post out a month (as you can see for yourself…). But once again, I’ve redirected. Rather than using that sweet hour (sometimes two!) when both of the little ones are napping–after laundry is folded and the floor is swept and other chores are done–to get on a message board and chat about the topic of the day with strangers, I am refocusing to use that time on things I once enjoyed. I still enjoy them, even though I tend to hit a wall quite frequently. It turns out, sleep deprivation is not very conducive to figuring out challenging plot points and creating stories more than a page long. Still, being able to edit through an old project, or add just a few paragraphs, is a nice break from my old rut.

3. I reorganized

I sorted out children’s clothes, set up a new chore chart for Leah, cleaned off my little table, filed things away, arranged curriculum… I did all sorts of organizational projects. It wasn’t that these were areas previously neglected, but that I had more wiggle room to figure things out. I could take my time and not feel stressed, even when I didn’t finish something in one sitting.

4. I got bored

Even with the redirection towards things I hadn’t done in a while (reading and writing, specifically), those things only satiated for so long. This concerned me. Am I so now programmed to move at the speed of this world that I can’t sit for just a few minutes without needing to be doing something? Of course, I’d also wonder in these moments of boredom, whether I was forgetting something that actually needed to be done–a phone call to be made, a load of laundry needing attention, a child… But boredom can be good. When Leah asks me, “Mommy, what can I do?” I try not to give her any specific directions. Too much these days (in my opinion), children rely on their parents (or other adults) to tell them what and how to play. Should parents be involved? Sure. But not to the extent that a child literally cannot think of a single thing to occupy their time without the help of an adult. Children need to exercise their creativity, resourcefulness, and initiative to cure their own boredom. And my boredom reminded me of that. I needed to re-learn how to utilize my own ingenuity to rid myself of boredom.

5. I texted and emailed

Rather than using Facebook to contact people, I found myself texting them more. I also became more specific in who I spoke to. Things that I may have posted as a status on Facebook were texts to certain people instead. I became more intentional in my communication with others. I also emailed longer messages to people, and in so doing, I realized that I didn’t have the email addresses of many (most?) of my friends, or even close family. I’m not sure of the implications of that, but I did find it interesting, considering that 10(ish) years ago, my emailing was much more personal, and prevalent. I currently use email for receipts of online orders, contacting Anna’s service providers and coordinators, and a few email list-serves. But I rarely use email for contacting friends and family. Again, nothing really good or bad about that–just interesting.

6. I quit.

I stopped my social media fast one day early. It wasn’t because I gave in, or because I couldn’t take it anymore. It wasn’t even because Facebook kept emailing me that I had 47 notifications. It was because it had served its purpose. I had been refreshed, and I had come out of my funk. I was ready to be with my friends and family again. I’m glad for the reprieve, and now I am more equipped to manage social media in the future. I can set limits and boundaries; I can use it more responsibly and be more intentional with my posting. I can find other things to do in my down time that aren’t quite so redundant as scrolling through my news feed. I can make time for reading and writing. I can text and talk a little more one-on-one with friends and family. I can do all of those things. I could before, but now I’ve retrained my brain to explore other options and give myself a little more variety.

I enjoyed this exercise in self-discipline and redirecting. I really do think that everyone should take a break and mix things up every once in a while. Maybe you don’t need a whole week (or 6 days), but maybe you just want to regularly take one day a week off, or one day a month. Maybe you just want to appoint only certain hours, or attach specific conditions so that you use social media more responsibly, and aren’t putting yourself in a rut. Take the time to think about it, and consider whether or not you would benefit from switching things up and taking time off social media. Like me, you may be pleasantly surprised at the result.

Embracing the Disability

Any special needs parent will tell you that they went through a period of grieving and denial. Even if they knew “something” was going on, they didn’t always accept it. Acceptance comes in waves. Sometimes you fight against it, and sometimes you go with the flow. Acceptance doesn’t mean enjoying the disability, or being happy that my child is disabled. It means I’m no longer pushing angrily against it. I fight FOR my child; not AGAINST her disability. It is what it is, and until there’s a cure, it’s here to stay. There’s no use wasting my time and energy in a fight against something that isn’t going away.

And perhaps it’s hard to describe. Parents of typical kids, with no special needs or disabilities, may find it hard to understand. I can be angry with the disability–I can want better for my child, and mourn the losses we experience–while still accepting it and even embracing it.

Embracing the disability means accepting it in a way that is helpful to my child. Instead of “getting by” with as little as possible, I will make use of every resource available to make life more livable for us.

It means… giving her Zyrtec when I would normally just let allergies run their course–maybe treating the symptoms homeopathically, or helping it along with raw honey, but nothing so aggressive as actual allergy medication. But when I see her so very frustrated at her sinus headache, rubbing her nose (and thus wiping snot all over her face), and generally irritated at the whole thing, I’m willing to give allergy medicine a try.

It means… preparing myself for the possibility of her someday needing a feeding tube. We are so very grateful that at this point, she can still swallow food without choking, she’s still in a normal BMI range, and she’s generally healthy. But we also know that the time may come when those things could decline, and we might need to consider a feeding tube. And I’m willing to go that route. I’m not going to stubbornly wait until she’s dangerously malnourished, or until feeding her solid foods is dangerous (if she chokes), or until it’s our absolute last resort. I won’t waste time in denying that reality. I’ll be ready for it.

It means… getting a disabled permit. Yes, she still walks. But she gets fatigued and will sit/lay down in the middle of a parking lot if she doesn’t want to walk anymore. And if she does have plenty of energy, she will dart. We have a special needs stroller, now, and it takes some room to set it up and get her in. All of those things make being in a “normal” parking space a little extra hard. So for safety’s sake, we got the permit. Already it has been worth it. We could have fought against it, making do in the regular spaces, staying in denial and waiting until she’s no longer walking (if that does happen–it’s an unknown). But we’re embracing it, and we’re using whatever we can to make life with Rett just a little bit easier.

It means… spending a couple of hours sorting through apps and games on her new tablet to find the ones that would be easiest for her to use, would encourage hand-eye coordination, and would–hopefully–help to establish some kind of communication. It means finding a way to make learning more enjoyable, and communication more accessible. Understanding her needs and interests, and using that knowledge to enhance her day-to-day experiences. Knowing her limitations and finding ways to work around them, rather than trying to push her into using something that isn’t realistic for her. In speech therapy, we aren’t trying to get her to talk; we’re trying to find the right alternative communication device or app. We haven’t “given up”; we’re just recognizing what she can and can’t do.

We embrace her disability, but that doesn’t mean we think it’s wonderful. We just know that life will be much easier–for her and for us–if we accept it and make those little adjustments as we go. Special needs parenting is never easy, but there are ways to make life more livable. If we can focus on what we can do, and take advantage of every resource available to us, that life will include more achievement, richness, and joy.

 

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