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.

 

Our Many Colored Days

There’s a book that my oldest daughter enjoys. It’s called “My Many Colored Days” by Dr. Seuss, but this is not a typical “Dr. Seuss” book. The book goes through different colors, connecting each color with both an animal and an emotion. For example, one page reads, “On bright blue days I flap my wings,” (showing a drawing of a blue bird) “Some days, of course, feel sort of brown. Then I feel slow and low, low down” (with an illustration of a bear in a cave). It was clearly intended to teach children to recognize their emotions, and also learn colors and animals while they’re at it. When I think of how I feel about Rett Syndrome, this book sums it up.

Some days, we are happy and hopeful, seeing progress Anna has made in therapy, or listening to her laugh incessantly over tiny, silly things. Those days are bright yellow and green, giving us the notion that perhaps we really can do this.

Some days, we are sad. A muddy, grayish day. Mourning the skills she once had; lamenting as I think about how I’ll never hear her say “Mama”, or “I love you.” Regretful that we didn’t notice the signs earlier, or pay closer attention. Going to friends’ birthday parties, or even just having a playdate, can bring feelings of isolation, and sadness upon realizing that friends’ children who are younger than her, have surpassed her abilities. Hearing a friend’s child–a year, or even two years, younger than Anna–speaking in full sentences, while all she can do is grunt? That cuts to the heart.

Some days, we find relief. We have a good day; we are blessed by friends or family; we have a time of rest. When she is content, we are content. When we can go out and do things, without an incident, that’s a breath of fresh air. When a day goes smoothly, we rest in it. We savor it. Those days are aqua colored. Like clear waters at a pristine beach.

Some days, we feel guilty for not doing enough for her (what is enough?), and for staying in denial about her regression for so long. Guilt over snapping at her when I’m frustrated or tired, not giving her my full attention when she needs me, or not giving Leah the attention she needs, because we are giving Anna attention. Those days are black; dense with fear.

Some days, I feel just plain tired, like a misty, purplish blue, like an old bruise. We go through the fog not by clarity of sight, but simply by force of habit. Not only is my youngest keeping me up most the night, but then early in the morning, we have school, therapy, and other activities. But there is emotional tiredness, too. I frequently feel drained–or paralyzed. Some days, just feeding them and keeping them safe is all I can manage.

Some days, I feel frustrated. Even angry. On those fire-red days, I hate Rett Syndrome. Hate it. When something is wrong and she can’t tell us what it is. When I see the longing in her eyes, wanting to communicate, or to hold something, and she just… can’t. Sometimes, I’m even frustrated with her, even though I know it’s not her fault. But I’m still frustrated that plans are put on hold because she’s too sleepy. Or that she’s doing her “pterodactyl screech” in the middle of the library. Or that she’s stopped walking in the middle of the parking lot, because she just can’t go any further. Or that I’m still changing her diapers. Or that she threw food all over the kitchen at mealtime (and squished it into her hair).

And amidst the whirlwind of emotions, I have to stop. I look at Anna, and I have to chastise myself. It’s not about me. It’s about her. She’s the one with Rett Syndrome. Imagine what she must be feeling.

She must be frustrated, and even angry. If you were trapped inside a body that didn’t do what you wanted it to do, and couldn’t communicate even the simplest of needs, wouldn’t you be angry? Her meltdowns and periods of sobbing may be confusing and inconvenient for me, but they must be the culmination of the pain and frustration of never being able to communicate your needs, wants, ideas, or feelings.

She is tired. I know this for a fact. How many four year olds do you know that still take a three hour afternoon nap? Even after taking an hour nap in the morning? Or how about falling asleep nearly every time she gets in the car? Or while she’s eating? She’s exhausted. And surely she, too, is emotionally and mentally drained. Wanting to communicate, to move a certain way–and not able to do so.

As I think about her falling asleep, I wonder–what does she dream? Is she running, playing, even talking? Is she soaring up high like an eagle, or snuggled someplace warm like a bear cub? Does she say funny things and have a lot of friends? Does she dance, sing, and paint? Is she free? We may never know, but I hope this is the case. I hope she finds relief in her slumber.

She might even feel guilty. Maybe she knows that we have to cancel plans when she has a hard day, or that we can’t go certain places with her. Or maybe she understands that her crying and screaming is frustrating to us. She may even realize that her sister desperately wants to play with her, but she can’t. And sometimes, she accidentally hits her brother and makes him cry; not because she is mean, or was even angry, but because she can’t control her arms.

I can see when she is relieved. When she’s swinging at the park, she’s released from the strain of gravity. When she smiles softly in the bathtub, I can see her letting go. I’m not sure exactly why she loves the water so much, but I can make some guesses. It could be that her muscles are relaxed in the warmth; or that her body feels light. It seems she moves a little more freely in water, and perhaps she feels more in control in that environment. Maybe she is released of pressure and tension. Or maybe it’s the muffling of sound while her ears are under water. It could even be as simple as her liking how her hair feels when it’s submerged. Whatever the case, she loves it, and she’s alleviated by it.

I know she feels sad. I don’t always know why, but she will cry and whine when she is sad. I try to comfort her, and sometimes I fail at the task. Sometimes she is beyond comforting. I cannot address the root of her sadness, because I don’t know where that root lies. So I hold her, kiss her, and rub her back. I only hope that I am enough to help her through the rough times.

But, oh! When she is happy, it is pure joy! Unadulterated, unsuppressed, complete and utter JOY. She laughs from her belly, and sometimes she’ can’t stop. We cannot help but laugh with her. We don’t always know why she’s laughing, but we go along with it. And when she looks–really looks–into our eyes, her bright blue ones shining back at us, we can see the happiness only she can possess. That delight that belongs only to those who are innocent. Her joy is contagious. It’s a shining star in the darkness. A glimmering jewel among jagged rocks.

She works hard, and we press her to keep working hard. And that joy is what keeps us going. It’s what gives us hope and the drive to persevere. It’s why we haven’t given up.

I know this post was full of a lot of downers and negativity. But sometimes we need to recognize and acknowledge the struggles so we can appreciate the victories. Sometimes we need to be in the dark so that the light shines brighter.

 

Knowing Brings Relief

It’s been a full month since my last post. Life has been busy, it’s true. But I also couldn’t quite grasp a firm topic to discuss. Sure, lots of news stories have come and gone in that time, but they’ve been talked about so much, and I felt that I wouldn’t be able to bring anything new to the table. So I put off writing for another day. Today is that day, I suppose. It’s quiet now (relatively). With Anna and Damien both sleeping, and Leah occupied with watching a movie, I have free hands and a little room in my brain to formulate a new post.

I suppose I should simply discuss the only thing that seems worth discussing right now.

Last Thursday, Anna received an official, on-paper, clinical diagnosis of Rett Syndrome.

According to websites and parent forums, it’s typical for parents to be grieved after the diagnosis. But I’ll be honest–I’m relieved.

To be clear, I’m not relieved at the prognosis. The possibility of her losing the ability to walk, to eat, to use her hands… The likelihood that we may never hear her speak a single word… Those are not things that bring relief. But it’s the knowing.

There’s a part of the book, “One Thousand Gifts” by Ann Voskamp (one of my new favorites!), where Ann and her husband are facing a mysterious illness in their pigs. It sums up beautifully how I feel about this diagnosis:

I point to the screen, to that name too long to pronounce. “If that’s really what’s going on out in the barn, are you OK?”
I can feel his relief, the way it drains into me.
“Yes… and no. I don’t like what it is, or that it looks like it’s nearly impossible to eradicate, but you know what?”
I turn to find his eyes, the way he and I meet, touch. His hands around me tighten, us melded in hope.
“I’m strangely happy.”
It’s true. No furrow plows across his brow. His maritime eyes lay calm.
“God’s good. Just naming it… Just naming it. When you don’t have the name for something, you’re haunted by shadows. It ages you.”
I press my lined forehead onto his.
“But when you can name something…”

We’ve “known” for a while that it was Rett. After the doctor mentioned it at an appointment in January, I did some research online and every description I found looked like a perfect descriptor for Anna. At first I did grieve. The future was too heavy to imagine. With “just” autism, there is some hope for improvement. But with Rett, there is only decline. Things do not get easier; they get much, much harder.

As time went on–as we waited for blood test results and had more testing done (one of which was an EEG in which we discovered she was having seizures, so now she is on anti-seizure medication–and has been improving in connection and awareness since then!)–the diagnosis of Rett was no longer a “possibility”, but a fact. Before long, we couldn’t see anything but Rett in her. And so it was a slow process, four months long before we actually received the diagnosis, which allowed us to drink it in slowly.

While it was yet undiagnosed, we were able to hold onto that last bit of hope that maybe it wasn’t Rett–maybe it was just severe autism. And who would’ve thought that severe autism would be the less debilitating condition? I never would’ve imagined saying such a thing. But it’s true. There is more wide-spread knowledge of autism, even severe and low-functioning autism. There are more community supports, more parents who can relate, more resources available. But Rett? Not so much.

Still, just knowing is a relief. Having that name to look at, to research, to champion for, to share with others; having a more specific course of action laid out, despite the numerous possibilities and wide range of outcomes within that singular diagnosis.

But now we know what to expect. Sometimes losing hope gives another kind of comfort. Giving up the anxiety of “Will she ever be potty trained?” and exchanging it for, “I’m glad she’s still eating solid food.” Giving up all notions of a “normal” future will allow us to focus on the here-and-now; to rejoice in the smaller accomplishments, because now those small things, are really very big. Rather than grieving her lack of words, I can be even more excited when she uses other means to connect–her eyes, her cuddles, her vocalizations. Now that we have been warned what the future may hold, we can enter into it more gracefully, and slow down to enjoy each moment leading up to those harder things.

Learning about Rett will be a whole new journey. I have a 500+ page handbook on the subject, given to us by the Rett specialist who confirmed her diagnosis. I’ve barely started; it’s not the type of book you rush through. It has such a wide range of information–scientific studies, histories, personal stories, advice from experts–everything you can imagine on the subject. And I’m determined to learn everything I can about it, so I can help Anna as much as I possibly can.

I may have actually run out of words on that subject for now. I’m sure it will be revisited time and again in the future. It’s our new life, now, after all.

Below, I’m going to list my favorite websites for Rett Syndrome. I encourage you to check them out and learn a bit about the condition. Most people aren’t aware it even exists, so you’ll be ahead of the game. And the more people who know, the more support and understanding we’ll gain from the community at large.

http://www.rettsyndrome.org

http://www.curerett.org

http://www.girlpower2cure.org

http://www.nwrettsyndrome.org

http://www.graceforrett.com

Awareness vs. Acceptance

So it’s Autism Awareness Month. In case you weren’t aware. (See what I did there?)

I think everyone is now aware of autism. To the point of panicking and coming up with a dozen different theories on both causes and cures. And maybe some of those are true. I won’t pretend to be an expert–I’ve only been at this “Autism Mom” thing for about nine months. And though I now know it much better than I had before Anna received her diagnosis, I was still aware of it.

If you didn’t know, there is actually quite a bit of division amongst the autism parents and autism community at large (encompassing autistic individuals, parents of autistic children, therapists and specialists, teachers, etc.) in regards to awareness. There are actually quite a few “counter-campaigns” against “Autism Awareness Month”.

There’s “Tone it Down Taupe”, the source of which I can’t seem to find. However, if you just google it, you’ll find all kinds of individual pages that are sporting their taupe ribbons to spread their message. What message, you ask? Well, according to one blog, that message is: “It is taupe (or tan. Or beige. A non offensive, non obtrusive color) to symbolize the toned-down sensory and emotional experiences of those lacking autism.”

And then there’s “Autism Acceptance Month“, put on by the Autistic Self Advocacy Network (ASAN), which aims to refocus the energy spent on finding a cure, on building support and improving the quality of life for those experiencing autism. The important thing to note is that ASAN is an organization founded by and run by autistic adults, meaning there is no doubt about their goals and whether or not they know what is important to the autism community.

Both of these campaigns are opposed to the fear-based, panic-inducing multi-million dollar fundraising campaign put on by Autism Speaks (AS), which was the organization which declared April to be Autism Awareness Month. Their current pitch is called “Light it Up Blue”. They’ve had that slogan for a few years now, from what I understand, and there is quite a bit of controversy over the whole thing.

I’ve heard totally different sides of it, and honestly I’m slightly ambivalent as to where I stand in regards to Autism Speaks.

ASAN and other self-advocating organizations insist that AS has made too much of a profit, and does nothing to actually serve the autism community. According to these autistic adults, and many parents of autistic children, AS has used a double-edged marketing ploy to “raise awareness”. First, there is the “everyone gets freaked out” part of the campaign, wherein they talk about the statistics (which I’ve already discussed in an earlier post), and say that autism has “stolen our children”, or that it’s an “epidemic”.

Is autism more frequent? Perhaps, and I don’t want to get into that debate at the moment. But as a lover of words (logophile?) I have to object to calling it an “epidemic”. An epidemic infers that there is a contagious disease–a singular pathogen–that is spreading from one person to another. This is simply untrue of how autism works. It has many different causes, and it looks different in each person (that’s why it’s a spectrum!). It cannot, therefore, be called an epidemic.

But on with the point…

From some parents of high-functioning autistic children (including PDD-NOS and Asperger’s), I’ve heard that they have not felt represented–that there’s too much tragedy and terror in their marketing, and not enough of the positive side of autism.

And yet, on the other end of the spectrum (pun absolutely intended), you have the parents and guardians/caretakers of low-functioning autistic individuals, who also feel that their child’s autism is not being represented, because of all the fuss about autism creating geniuses and all of the inspirational stories of “recovery”. We are one of those families, whose autism looks a lot more complicated and intensive than HFA/Asperger’s looks like.

So which is it? Are they too panic-inducing, or too rainbow-and-unicorn?

Well, it would seem that AS is not really serving anyone.

But with such a complex disorder, with so much variety, it’s nearly impossible to represent everyone. But what AS could do, which they haven’t done, is provide actual support for autism families, regardless of the level of functioning. Sure, there are some “resources”, but it’s just a bunch of literature, which families already have access to through their other care providers. I’ve looked all over their website, and I can’t find a single thing that is provided for autism families that wasn’t already provided to us through our local resources. For an organization that is supposed to be the “big kahuna” when it comes to autism advocacy, they don’t have much to offer.

Most of their money goes towards research, research, and more research. Oh, and marketing for more money. For research. They are intent on finding a cure, though autistic adults have insisted that there is no cure, because it’s not a disease. I’m inclined to agree with them on this point.

I believe I’m getting slightly off-track, but I wanted to give that foundation before I explain my predicament. You see, I am still torn on whether or not to participate in Autism Awareness Month, or in what fashion I would do so.

Awareness can be good, because it can bring about more understanding and patience with autistic children in public, and it can encourage people in positions of power (like school board members, heads of health insurance companies, politicians) to enact measures that will help families with autism to get the services they need. Unfortunately, most of the “awareness” we see these days is all about fear, panic, and finger-pointing.

Acceptance is also good, because it doesn’t try to “cure” autism, but meets the autistic person (at any age) where they are, and simply helps them to create their best life, whatever that means for them. Acceptance is loving the families and providing practical support for their daily lives. No fear, panic, or finger-pointing. But acceptance also tends to create this rose-colored version of autism that doesn’t apply to all families, particularly those with low-functioning autistic individuals.

So acceptance removes the “dirty word” stigma and promotes more love, understanding, and support for individuals with autism. But awareness reminds us of the reality of a total lack of speech, of changing a nine year old’s diaper, of the constant mess, of wandering away and disappearing, of sleepless nights, and those screaming fits where all you can do is contain them and try to stay calm yourself. And our life? It’s somewhere in the middle of all that. We’re somewhere between awareness and acceptance. Between chaos and unending love.

So I’ll change my Facebook profile photo and cover photo, and my Babycenter avatar. I’ll “Share” whatever great articles or memes come across my news feed. I’ll rally with those who want to rally, sigh with those who want to vent, and create my own “Autism Awareness and Acceptance Month”, where I can nod to the hardships while still smiling fondly at my Sweet Girl, who loves to cuddle, sings without words, dances despite her motor skill difficulties, and adores animals. Because really, isn’t that what life with autism is? Some days you are at ease, comfortable, peaceful. But the next day could be torn apart by an unexpected screaming fit, or a common illness like a cold or flu, which becomes so much harder because they can’t tell you where it hurts. One day is laughing in the park; the next is crying in the middle of the night. It’s all of these things, and families need both awareness and acceptance–the fight as well as the embrace.

 

 

Everyone Else is Talking About It. Why Not Me?

If you are anywhere on social media (which of course you are, because you’re reading a blog), you have most likely heard about the new “scary” statistic of 1:68 children having autism.

Is there a reason for this? Does this point to an environmental cause? Better diagnosis? A link to modern medicine, particularly prenatal care? These are the questions I’m seeing floating around the internet. But not by autism parents. Because guess what? We’re already living it. And there’s an interesting trend among the other autism parent bloggers. In short, we’re tired of the fear. That people tremble and panic when they see that the world is being invaded by children who are just like ours–that is hurtful and frustrating to parents who are already in the thick of it.

In fact, this post was “inspired” by a friend’s Facebook post on that statistic. She hadn’t said much on it, but some of her friends (who I do not know) had made some comments about the usual suspects as far as the causes of autism. This was my reply (which I will in turn expand upon in this very post):

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A recent study found commonalities in the brain structures of autistic children. This seems to indicate that autism occurs in the late-first or early-second trimester of pregnancy, when the cortex is being developed. What’s also not accounted for in studies like these is the fact that autism is a set of behaviors. It’s not a disease. It has MANY causes. A good portion of people with autism also have other disorders (such as Downs, Fragile X, MTHFR, seizure disorders, and Rett’s–which is what my daughter has). So autism is presented alongside those other disorders, and is not necessarily a solitary diagnosis. That needs to be taken into account when seeking a “cause of autism”. Because the fact is, there are many causes, and it can be different for every child. I’ve known parents whose children presented with autism within two days of a particular vaccine. I also know parents of non-vaccinated children who have autism. And even if the actual rate of autism is growing–even if this statistic is not merely the result of better diagnosis–it’s not the end of the world. It’s not a death sentence. There needs to be less fear and finger-pointing and more support for the families who experience life with autism.

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And now to go a little deeper than my knee-jerk Facebook response…

It’s important to realize something when reading statistics: Autism is a set of behaviors, not a singular disease caused by a specific pathogen. There are many causes, and it looks very different in each and every person who experiences it. So to try and pin autism on ONE cause, or ONE toxin… it’s simply inaccurate and using faulty logic.

As I said in my Facebook post, some people have autism because they have Down’s Syndrome, or Fragile X, or MTHFR, or Rett’s (what Anna has). It could also be caused by a traumatic birth, a severe head injury, an illness, or a number of other “environmental” factors. Point being, the cause can be different for each and every person who has it. There is no one cause. There is no one cure. In fact, there’s no cure, regardless of the cause. Therapies are there to make life easier for the person with autism. But their brain has already been wired with it, so they will always have it. Detoxes and intense ABA and hours upon hours of “floortime”–these are all great things that, for some people with autism, will greatly improve their quality of life. But for those whose autism is caused by something non-environmental (like a genetic mutation), those autistic behaviors are more likely to stick around. That is not to say we should give up and not try to make things easier for them. For those with severe or “low-functioning” autism, it’s even more crucial that they receive the therapies that will help to make their lives easier and more enjoyable.

So looking at it from a more realistic perspective, recognizing that there are several factors at play here, and now knowing that the fear surrounding the “A-word” can be hurtful to those already experiencing it–I would hope that Typical families would take a more appropriate response.

What would that response look like?

First, stop trying to point fingers. Not only do you not know my child, or what medical procedures may have been done, or what environment she grew up in, or what may have “pulled the trigger” on her autism, but it’s simply not your place. It is the place of the parents to determine the underlying cause–if any can be found–and deal with it in a way that works for their family. “Finding a cause” sounds like a good idea, until you look at the facts and see that there are dozens of causes, and each person with autism is unique. Finding one cause will never happen. So please stop jumping on the band wagon.

Oh, and pointing fingers will many times lead to pointing at the parents. And while it’s true that, perhaps in some cases, there were cases of autism being the result of toxicity from vaccines, or too much Tylenol, or too many ultrasounds, or Pitocin, or whatever they’re saying these days… Even if that’s true–even if it is the result of something the parent chose to do–parents of children with autism have loads of grief and guilt already. They don’t need yet another “well-meaning” friend pointing out what they’ve done wrong. We second guess everything. We play things over in our minds, wondering if we could have made another choice that would have kept our child “normal”. We carry the burden of our child’s diagnosis every single day. The last thing we need is someone telling us it’s all our fault and if we had just skipped that ultrasound, or eaten more organic food, or not given them a painkiller when they were screaming from teething… If we had just… then our child would be fine. You don’t know that. And we wonder that enough already. So please just stop.

Second, what that statistic says to me is not that we need to find a cause or a cure (because, as mentioned above, that’s impossible), but that we need more supports in place. In schools, in churches, in community groups, in doctor’s offices. More therapies available; more teachers being trained; more time with therapists. More approval from insurance companies to cover (at least partially) more appropriate therapies. More cohesive support and communication from state-funded support systems. More flexibility in the classroom to meet the individual needs of the child. More specialists in more locations. These factors can make a big difference in the autistic child’s quality of life, and their future success and independence as an adult.

But even outside of the “professional” arena, we need more support from Typical families–our friends and relatives. We are pretty much always tired and have a lot on our minds. Being able to have some respite–a date night, an afternoon coffee with a friend–is such a precious gift. Even if you don’t know an autistic family personally, you can still find a local ministry or support group, and offer to be a respite care provider. Or maybe you’re busy yourself, but you can offer some funds to pay for a respite caregiver. Or take a special family a meal, just to give them a night off. Offer a play-date; give an ear to listen; give a hug; offer to clean their house or run some errands. Between therapies, special schools, doctor’s appointments, meeting with specialists and school administrators, and just paying that extra attention that a child on the spectrum needs, not to mention caring for siblings and working–this leaves little time for errands, cleaning, and cooking. We get by. Our house is not a disaster, and we eat home-made food six nights a week. But sometimes it would be nice to not have to do those things, and spend a little more time with our special kiddos.

Third, what this statistic says to me is that we need more education for the general public. That not every child screaming in the store is simply undisciplined. That the child wandering down the road isn’t trying to ignore you, and they may be in danger. That we need less fear and more support. That we need less awkward silences and apologies, and more hugs and questions like, “How can we help you?” That we need less pity and more encouragement.

Believe it or not, I may have actually run out of things to say on the subject. I hope this gave you something to think about the next time you hear a new cause, a new cure, or a new statistic for autism.

A Shout-Out to Leah

I recently read an article about siblings of special kiddos, and how they do so much and yet are frequently overlooked. The article was very positive, thanking the author’s children for loving on their little brother, who has Autism. He talked about how they cuddle him, tickle him, and help to teach him. The article touched me, and I realized how much I needed to acknowledge Leah’s hard work and love for her sister.

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So Leah, while you may not be reading yet, and it may be a while before you truly grasp what I’m attempting to convey here, I hope that some day, you will read this, and realize how much we appreciate you.

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You hold your sister’s hand in the parking lot, so she doesn’t wander off and get hurt or lost.

You play with your brother and, while to you it’s just playing with the baby, for me it’s keeping him occupied and engaged so I can have some down-time.

You patiently and graciously just give a little sigh when your sister hurts your toys, or takes something from you. Sometimes you get frustrated, or sad–and rightfully so–but you (almost) always forgive her right away.

You advocate for her at birthday parties and play-dates. When other kids look at her strangely, wondering why she isn’t talking, you tell them simply and confidently, “She has Autism, so she doesn’t talk. She wants…”–and you then tell them what she wants. Because…

You understand her–or at least you try.

You help me–constantly. You pick up toys, take things out of Anna’s mouth when I’m with your brother and can’t get to her quickly; you help me keep an eye on her when we’re out and about.

You forgive me quickly when I’m short with you. And I’m sorry that happens much more than it should.

You tickle and play with your sister, giving her a serious case of the giggles.

You let me know when Anna’s getting into something she shouldn’t, or when she’s (once again) putting something in her mouth.

You accept alternative activities when Anna’s too tired or too upset for us to go out and play. I know that’s really hard for you, and sometimes it upsets you very much, but you do accept it and move on.

You give me hugs and kisses when I’m having a hard day. You have no idea how much that means to me.

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I’m sure there is much, much more that Leah does–and will do–for her sister, and for us. As the first-born, she also has more expected of her, and sometimes we expect too much. Sometimes we take advantage of her willingness to help. Sometimes we don’t listen to what she has to say, because we’re in such a rush to get things done. And sometimes we forget to say “please” and “thank you”. Especially “thank you”. Because there is so much you have done, and will do, that we can never say “thank you” enough. Your life will be different than most, and I hope this love and affection, this attentive guardianship, that you hold for your sister, will last long after Daddy and I are gone. In the years to come, when we are too old, too sick, or too dead, to care for your sister, it will come to you and your brother to care for her. To advocate for her, to make decisions for her care, to love her, believe in her, stand up for her, listen to her, and protect her. I hope you’re up for the challenge. It’s a lot of hard work, but the reward is great.

Thank you, Leah.

Thank you.

 

On Seasons, Challenges, and Follow-Through

This year I’ve felt a burden to challenge myself. I know, with three kids (one of whom has special needs), you wouldn’t think I’d need any more challenges. But these challenges I’ve been considering are all things that will improve our quality of life, and will instill good habits for the future. Throughout scripture, I see that people are regularly called into seasons of life and various personal challenges. They include fasting, being in the wilderness, financial hardship, and illness. These are times of refinement and purification. And many challenges keep presenting themselves to me. I feel that I ought to answer that call and push myself to complete them.

And yet, as I chronicle this, I am faced with the legacy I’ve had on this very blog, of not finishing what I start. I’ve begun many different series’ and themes, following them closely for a few weeks, then losing interest or becoming too busy, and letting them fall to the wayside. In January, I challenged myself to keep a food diary. While I did follow through with the initial challenge of only using THM recipes for the whole month, I did not follow through with the diary. Partly because it was not getting much of a response from readers (not their fault… my food diary would not be very exciting to most people), and also because I allowed myself to neglect it. I would say that I became too busy, but… here’s the thing.

I’m always going to be busy.

I’m always going to be filling my time with something. But making the choice to fill my free time (those precious spurts of time when the kids are asleep or otherwise occupied) with one thing over another, that can vary from day to day. And sometimes I don’t want to take the time to write, perhaps for fear that the moment will be too short to get all my thoughts out; or it may be that there is simply something else I would rather be doing, like talk to my sister on the phone, or catching up on a favorite TV show. We don’t always choose the same thing for our leisure time, and a that’s a good thing. Otherwise, that one thing would either become boring and no longer enjoyable, or it would become an obsession.

But maybe that needs to be the challenge this year. To actually follow through on a blog series; to complete a challenge; to do what I say I’m going to do.

And so here begins my goal for the year: From this point forward, I will endeavor to complete one challenge per month. January was changing my food. February was simply about sticking to the changes to food, and evaluating how I could make it last for a lifetime. March? Well, this month I’m doing two challenges: First, I’ve joined a “Put away the scale” challenge on the THM Facebook group, which is not weighing myself for the month, and not obsessing over weight loss, but simply focusing on healthy eating and trusting the Lord with my health. The second one is to name gifts, as seen in the book “One Thousand Gifts” by Ann Voskamp (which I am one chapter away from finishing!). That one is lasting into next month as well, as I have timed it to coincide with Lent, though I wouldn’t say I’m necessarily practicing Lent–it just seemed an easy/convenient way of measuring out roughly six weeks.

So now I must set to the task of choosing challenges for the next nine months. Some things I’d like to do include reading more pregnancy, birth, and early parenting books; completing a study or devotional (another activity I frequently start but never finish…); stop yelling at my kids and be calmer as a parent; work on, if not complete, one of my novels; do some various acts of kindness that let my friends know I care about them; begin training for Postpartum Doula certification; and lastly (for now), begin a regular exercise regimen.

Which goals will be in which months is yet to be determined. But taking on each task in an organized manner, one month at a time so I can focus on that one thing, will hopefully make the difference between accomplishment and (yet another) failure to complete a goal.

So while New Years’ Day has passed, and we are no longer figuring out our “Resolutions”, we can still continue to give ourselves something to reach for. Call it a goal, a challenge, a dream… Whatever it is, make it yours. Own it. Do it. Make it happen. Don’t let yourself slip up like I have done so many times. My challenge for the year is to actually reach my goals. My goal is to accomplish all of those little tasks, one by one, month by month. It can be done; it will be done.

I hope.

So what is your challenge for this month? What goals are you setting for yourself? How do you keep yourself from slipping and giving up? What words of advice can you offer to those who have a history of slacking off on their goals?

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